FLUSSH

I wish I was inside her head.

2009-02-19T18:17:00.000-08:00

I would have loved to be inside of Tinker's head yesterday as we waited for her to be wheeled off to surgery. Her Dad, RosieD, and me all waiting in one room, loving and doting on her. I was a tad late in arrival, on purpose, to the hospital. I figured they could get her settled in and deal with the 1st set of tears and I didn't want her to feel overwhelmed by all of us doting on her. Cause, seriously, with RosieD, it's all about who is more loving blah blah blah.

I sprinted across the parking lot, waited for 5 mins. at the check in desk, held my breath, and when the receptionist finally asked me, "Can I help you?" I was relieved. She didn't even have to ask my name. She said, "You're Tinker's Mom aren't you? She told me to look for a Mommy with purple hair." All I could do was laugh......purple hair! My hair is anything but purple. It is a running inside joke between me and Tinker though.

I got to her room and there she was clutching her stuffed animals. RosieD immediately apologized to me for Tinker's calling my hair purple. I just chuckled and Tinker giggled. She was nervous, she was brave, it was Roo's angel anniversary day. Driving to the hospital, I had so many memories flood my mind. The early morning doctor and specialist visits. The early morning admissions for surgery and testing. It was hard to not think of all those things and my Roo. But, I needed to be as strong as I could for Tinker.

The surgery was short and successful. Tinker was a loop in recovery. RosieD tried to exert her control over me and I did not budge. I was there for Tinker, I was not leaving her side, no matter how much she pushed and prodded me. I chuckled again when the nurses asked her to leave because she was too loud and in the way. I chuckled when the ENT went over all post-op instructions while staring straight at RosieD and the Ex, twirled on his foot, and winked at me.

Tinker and I got home and took a nice rest together before Blue came home from school. She was still loopy when we laid down and cuddled. I asked her if she was nervous having all of us there. She said, "Noooope. RosieD never talks to me like that at Dada's house though. EVER." I asked her if she liked the way RosieD talked to her before and after surgery. Tinker said, "Yeeep." It saddens me to know that it was all just a show. RosieD has shared with me before how she is intimidated by my exceptional Mothering skills. LOL She needs to find some self-esteem.

I cuddled my Tinker, I tickled her back, I played with her hair, as she fell fast asleep all curled up with me. I smelt her sweet innocence, I ran my hand across her still baby smooth cheek, I thought about my "purple" hair. Mostly, I thanked God, this is her last surgery, she's with me till Sunday, and every night and everyday, I'll be showering her with all kinds of Mommy love, not because I have to, not because I feel I need to live up to this notion of Motherhood, only because she's my Tinker, my own unique, precious, brave, big hearted, loving, little girl.

Btw, no more martinis, I've cut myself off.........but still......

F*LUSHHHHHHHHHHHHHHHHHHH

Pretty Little Box....

2009-02-17T15:15:00.000-08:00

I was feeling confident, happy, accomplished, somewhat healed, physically and mentally strong, content. Key word *was* Now I feel lost, angry, confused, indecisive, hurt, misinterpreted, misunderstood.

During the holidays, I was able to stuff my feelings of grief wayyyyyyyy down deep because in the grand scheme of things I wanted it to be a good holiday for the girlies. I didn't want them to see Mommy crying, I didn't want them to see Mommy hurting, I wanted them to see their Mommy whole, full, happy, singing and shining. Walking through grief is exhausting in every way and I don't believe it gets easier only different. Ebbs and flows.

In my life I guess I learned this habit of stuffing everything away, in my pretty little box inside, till I just explode. Growing up it wasn't important what I was feeling or going through. Everything and Everyone around me was always more important. My Mother and her issues, then my oldest sister and her issues, then my little sister and her issues, in between there I guess the putting everything and everyone 1st finally got me to the point where I was so physically ill from the stress I ended up with Mono and almost dying. And then in my late teens and 20s BOOM it happened. All those years of stuffing it away exploded in years of anger. What I learned from my Mother was to just run away. And run away I did, over, and over, and over again, state to state, and back again.

I never lived in one place long enough to have friends longer then a year, growing up or in adulthood. Maybe that's why I like the Internet so much. I know my words are being read but without the intimacy of real life. Make Sense? Because honestly, I really don't know how to do it. Have friendships or relationships that is. I see this pattern in myself, in my life right now, and I don't know what direction to take next. I can't run away anymore. All I can do is hide under my covers. And hiding under them is what I've been doing best the last 5 days.
When I did emerge from my room this weekend and yesterday I was just a ball of anger to those around me which wasn't fair. Blue knows well enough by now when I'm that way it's best to just hug me or stay away. It makes me sad. I grew up taking care of my Mother's emotional needs and I don't want that for Blue or Tinker. So the stuffing of feelings becomes more intense, more frequent, the pursuit of normalcy and perfection even greater.

There are behaviors I began early in my life too, I didn't realize until Skye was here and after which are unhealthy that I use to cope. When feeling out of control, when the feelings are too much to bear, the anger, the hurt, the frustration, the doubt, I cling to my coping skills.
What do you do when you are 31 years old and are trying to learn such basic things are friendships? When you don't have a clue to the rules or boundaries? What do you do? When these things should have been a part of your foundation in growing up and you never got the chance. I try, I try, and try some more, but somehow I end up getting to the result of where I am now. Which isn't such a bad thing. Because life is all about learning and I want to learn, grow, change, and become better at it.

I'm having heart palpitations badly. They're driving me nuts. I feel like I'm so uncomfortable in my skin that I wish I could just jump out. A feeling I haven't had in a longgggggg time. I guess sometimes I hurt others before they have the chance to hurt me. Or, I hurt myself before they have a chance to hurt me.

This isn't a pity blog. This is me trying to figure out what's the right thing to do. I need an emotional flush and right now I don't know how to do it. Usually, writing helps. My head is spinning and swimming. I'm restless. Crawling under the covers isn't going to work today. Who can I talk to that could possibly understand all of this?

I hate this time of year so much. HATE IT. I hate feeling like life is backsliding after putting in so much effort to get it to where I want it to be. I hate feeling like giving up and just saying eff it all. Giving in, crawling back in my shell, and realizing that just as when I was little girl, a teenager, a young woman, I can't express my feelings in the real world. To do so would make me vulnerable. To do so would make me feel weak. Even my written word has been used against me a time or two. Then I think well does it REALLY MATTER?? I don't know.

When I was 3-6 yrs old I was told, DON'T TELL, When my Mother started living her life out of the closet, I was told DON'T TELL, don't talk about it, I'll never forget the day in 6th grade that My Mother decided that we were moving and she didn't want my father to know. I wasn't allowed to say goodbye to my friends, I remember standing at the bus stop with my friends, wanting to tell them so bad, "Today, I'm moving far away, I don't know where to, this is the last time I will see you." I remember screaming it in my head and how bad the words just wanted to pop out of my mouth.

I guess now, words do pop out of my mouth at times. Because for so long I had no voice. For so long, I couldn't speak. It's a constant battle in my mind. I guess that's one thing I really miss about Roo being here too, laying next to her telling her everything I felt Good and Bad. I miss having my marathon talks with the nurses who so patiently listened to me ramble on and on about everything and anything. I still talk to Roo. But it's not the same.

I keep ppl at a distance in real life. If you know me in real life then you know exactly what I'm talking about. You see me then poof I'm gone for another few months or till next year. Sorry about that. I'm used to making it OK for everyone else. I've always done this in my life and even more so when Roo was here. I take it all in until I implode. I talk in riddles, I expect ppl to read my mind, because **gasp** If I say what I'm really feeling or thinking the consequences and punishment are far more worse then just keeping it stuffed all inside my pretty little box.

I'm strong, courageous, complicated, jaded, angry, grieving, lost, lonesome, hurting, have a big heart, a mother, a daughter, a sister, a friend, an estranged sister, a sister that doesn't exsist, stubborn, intelligent, strong-willed, scared, hopeful, full of faith, growing, changing, stepping outside the box, withdrawn, reaching out, aching, wishful, doubtful, full of dreams, in the middle, on the edge, trying to find my way, trying to let go, and knowing no matter what most importantly, I SURVIVE.
*******FLUSH******

I've lost my funny..

2009-02-16T17:41:00.000-08:00

I have. I keep trying to find it and just when I get a grasp on it the squirmy little thing gets away. I've always loved to make people laugh. The past few years I've been wayyy to serious. After so much has happened though it's tough getting my funny back.

This weekend we went away for another one of Blue's Gym meets. I was looking forward to a weekend of fun, working on getting my funny back, and a little omgosh we're away from home staying in a fancy schmancy hotel with a pool!! YAA!

Then there was vomit, Blue's worst meet of the season, avoiding the other gym parents because seriously they drive me effing bonkers sometimes. I guess that goes hand in hand with always feeling like I will never be able to relate to people that haven't been through a major tragedy and if I have to listen to you complain about the remodeling in your kitchen one more time I may just poke my eyeballs out.

I digress......All last week Blue's coach seemed well off. She was a bitch on wheels and I was more sensitive to her words probably because of my own complicated relationship with my Mother. Blue's coach, she totally rocks, in every way. She has 3 daughters, one who fought childhood cancer for years and won, the other two successful gymnasts and now successful career women. I love when Coach shares about her daughters, I love when she encourages me, I love when I realize that Blue is one of her favorites and I'm not just thinking she is in my own mind. I love when Coach called me and Blue everyday leading up to Roo's 5th birthday to talk to us and make sure we were OK...even though we already spend 20hrs a week together.

I'm mad at myself though. I thought I had learned to listen to the little voice in my head and to follow my gut. I wanted to call Coach after practice on Friday and ask her if she was OK? Her bitchiness had hit a new high and I know she's been through a lot this past year, I know she gets squirrely before big meets, everything inside of me was screaming call her and ask her if she's OK? and then the other stupid voice in my head so no....that's dumb...you'll sound stupid. So, I didn't call her.

I sat and talked to her for over an hr. yesterday as awards were being passed out. We joked about how the other parents drive us nuts. We talked about Blue. She looked better, seemed more relaxed, and in turn I felt relief. She told me she had a doc appt at 7:30 this morning. I didn't ask questions I didn't want to intrude. I know she's had a killer headache, her jaw has been hurting, and I've seen her grab her arm wayyy to many times lately at practice. But, she's strong, she teaches aerobics, she coaches the girls, she's one of the healthiest women I know.

The 3hr drive home from the meet yesterday took 6hrs due to an "unexpected ice storm." Ya NO SHIT!, I drove at 4mph and witnessed or almost became an accident more times then I ever want to count yesterday. I called Coach to warn her, she was driving about 45 min behind me. She answered me with the dismissive tone I can't stand, the one where I feel stupid. Like she didn't believe me.

1 inch of ice was covering the road. I've never been so afraid in all the years I've been driving. I saw accident upon accident. There was one I saw I knew was a fatality. I cried when I finally arrived safely at home last night and found out it was a 17yr old girl who lost her life....in the horrible crash. A beautiful 17yr old girl.

I hadn't heard back from Coach...I guessed she managed home OK and I didn't want to call her and feel stupid again. I spent all of today recovering from this weekend that held hope for me. The weekend where hope was long lost early and I felt like I was functioning on autopilot with superhuman strength just like I did when Roo was facing a crisis.

Around 5 this evening, Blue came bursting into my bedroom, I was sleeping, having a nightmare about Roo, I hit the ceiling when she screamed, "MOM, phone I'msosorrytowakeyouup-Aunt.saySOIMPORTANT!" Wha, huh, I put my phone to my ear....hello???

Coach had a massive heart attack this morning, she's in ICU, she's had surgery, I can't wrap my brain around it. I can't. I listened to what little details there were to be heard. I hung up. Shaking my head in disbelief. My next thought, How do I tell Blue???? I said prayers, I whispered to myself, You ass you should have called her on Friday and asked if she was OK!!! Guilt over being angry at her for being super bitch this week. The not knowing....the love I have for her, the admiration, the respect, even if she is a bitch at times, knowing the stress she has been facing recently because she's shared it with me, because in a way we are kindred spirits and understand each other through our tragedies in life.

God, we can't lose Coach, she has helped me and Blue heal so much! She has helped me find my funny when I thought it was long lost. She has helped Blue heal and become so confident in herself.

We all arrived safely home last night......we drove through all that ice, accident upon accident, we ALL got home safe. I've lost my funny again........it's not funny.......God really.....it's not funny.......

F*LUSHHHHHHHHHHHHHHHHHHH

Knees.....

2009-01-23T18:20:00.000-08:00

I was only gone a few days. 2 to be exact. I had to take Tinker to her follow up ENT appointment and schedule surgery for her. I came back today. My heart dropped out of my chest when I walked in. It was chaos. There was screaming, yelling, no structure, and the ones I have come to love, I could see their battle scars on the outside even more. They were about to take their math test. I could see what she was doing. I walked over to her and asked her if she wanted to talk, we went out in the hall.

I knelt on my knees as I always do when I'm in the hall. I looked up to her as she spoke to me. "My Mom told me she's going to bring me to the mental hospital. She said they are going to tie me down on a bed to make me stop." My heart shattered into little pieces but I couldn't let her see. The difference of me being gone 2 days, there was so much lost, so much pain she is enduring, which now is physically seen by all. I've been screaming to get her help. My hands tied, the only thing I could do was be there every day and talk to her. She told me, you haven't been here, I so mad and sad.

I looked up to her, looked at all the hair that was gone, her eyebrows, her clothes, dirty and too tight. She asked me, "Ms. FLUSSH, it doesn't even hurt when I do it, does that make me weird?" My response, no, no it does not. I told her, Blue has been to the hospital. She was surprised. I told her, you are not the only girl who does this to herself. She started to cry and said, "I thought I was the only one in the world who did this." At the hospital they will help you. They will not tie you down to a bed, you will meet other kids that are just like you, and they will give you medicine to help you also. She perked up, "Medicine, other kids like me?? People that can help me stop??"

On my knees, yes, you can get better. You will be able to stop. I took her hand, I smiled at her, I told her how much I believed in her, how smart and beautiful she is. I told her I will always be there to talk to. I told her the hospital wasn't scary, if she went there this weekend, she won't be tied down, it will help her. I told her in detail what will happen. She knows Blue, she trusts both Blue and myself, she knows that I'm telling her the truth. She is a BRAVE girl.

I stood up bent over eye to eye. I believe in you I told her. "Ms. FLUSSH, I don't know why I do this to myself." I told her that's OK...sometimes there's a reason sometimes there isn't. I asked her if she could concentrate on her math test. She said meekly, "Yes." I asked her if I could hug her. She said, "Yes." I know her clothes haven't been washed for days, I'm a huge germ freak, I wrapped my arms around her gave her a little hug. We walked back in the classroom.

The teacher had picked the clumps of hair up around her desk. She sat down, only raised her hand once to ask a question. When she raised her hand I was already onto the next tragedy of the day. I felt guilty. I graded the math tests tonight. A handful got all the questions right....a handful, and this little girl, who is so broken, she got an A+ and I am so proud. Part of me wishes she is there on Monday so I can give her praise and see her smile. Part of me hopes she's not there because she is at the hospital getting the emotional helps she needs and some medicine to help her stop what shes doing. I love them all so much, I am a frazzled mess not being there the past 2 days. I'm a frazzled mess because Tinker has to have surgery.

My heart it's still in pieces on the floor in the hallway. I have hope though. There is always hope! I will do everything and anything I can do, to love them, to listen, to let them know they are not alone. They are NOT ALONE. Their lives are just beginning, I want to so desperately help them to believe that they can do anything, they can succeed, they are not weird, they can do ANYTHING!!! I want them to know, when they are home, dealing with so much, Ms. Flussh believes, she hopes, so they can dream, believe and hope too!

F*LUSHHHHHHHHHHHHHHHHHHHHHH

Post by Blue...

2009-01-18T09:30:00.000-08:00

Butterflies, rainbows, and days with clouds in the sky, are what we call Roo signs. Per Blue's request....I'm sharing her recent masterpiece....

Butterflies.......

Butterflies are cupcakes flying in the sky.
They are a gentle kiss from a Mother.
Their gentle tongue tickles the flowers,
in which they drink from.
Butterflies are examples of a humans life,
starting and ending,
when their life and soul goes to...
the special place we dream of......

Blue

I will PRAY........

2009-01-17T14:46:00.000-08:00

Thursday, May 22, 2008

Today, I picked Tinker Tot up from school, and she was crying. When I asked her why...again she said.. "Dada and RosieD said bad things about you." I was expecting this to happen eventually since I have not been reacting to RosieD's struggle to control me. There were the nasty words shouted at me the other night, they've been bouncing around in my head, and I've been wondering if my Tinker heard them.

I had to make a difficult decision tonight and decided not to see Tinker for the next 2 weeks. I WILL NOT have my daughter in the middle of something they should be handling as adults. I will not react with anger or show them my frustration. I will miss Tinker with every fiber of my very being but, I feel this is what's best for her at the moment because.........this way.....whether I'm the bad guy or not.......she doesn't feel like she has to tell me........she doesn't have to get in my car after school, cry, and tell me Dada and RosieD said mean words. She doesn't have to cry, beg, and plead for me not to tell RosieD because she's afraid of getting in trouble.

I know there was a time I needed to have all control in my life. Because, I was so unhappy with myself. Losing Roo changed me, Blue Bell being happy again changed me. I know ex-idiot could not stand the control I tried to exert over him daily when we were married........I wonder if I am out of the equation and they really have to look at themselves.......if it will make a difference. I know in the short term, I will be branded the mother who doesn't care.......the bad mother.......they'll say I only think about Blue Bell........but as I sat holding my little Tinker crying in my arms today.......I know in my heart....... in the long run.......there will be peace. If I have to take the brunt of it so be it........but Tinker won't be getting in my car after school crying her little eyeballs out, she'll be safe from the feelings of being in the middle, or feeling like she has to tell me, even though I've told her I don't need to know everything that happens at Dada's house. IT's OK not to tell me about the bad words said about me... I talked to her about not seeing her....about just being at Dada's for a bit, and the tears stopped...she sighed in relief. I grew up in a divorced home...filled with angry words, used as a pawn by both my parents to hurt each other. I won't do that to Tinker. I won't let her feel that push and pull, feel the need to tell me things to feel loyal to me and then turn around and tell her Dada things so she feels loyal to him....She always leads her Dada to believe she doesn't have fun with me....because then well, Dada buys her presents...like ummm a HORSE! I won't contribute to her learning to be more manipulative. She was relieved..RELIEVED..when I asked her what she thought about taking a little break. It's exhausting emotionally on every level. I sent her to live with her Dada and RosieD when Roo was dying. I made the unselfish choice to do what I thought was in her best interests at the time. I didn't want her to be scared, be scarred, from witnessing Roo's painful death....but I didn't anticipate any of this. I didn't anticipate this emotional turmoil being released on her by her Dada and RosieD. I have a plan, it will take time, I have a goal, it will take patience.....for now my little 6yr old needs a break....and if I'm the one that has to be unselfish and take the emotional blows not seeing her...well...I can do it. For 2 weeks.

I've been called insane, a piece of shit, a bad mother, but I have yet to utter one mean spirited word in their direction. I won't sink to their level of playing dirty. Instead, I will do as I have always done since Roo died. I will pray.

and those prayers.....they will be answered......it's been a long time since I wrote this....8 months.....who knew that over these 8 months things would get so much worse....and then.....SO MUCH BETTER!!!

F*LUSHHHHHHHHHHHHHHHHHH

We all have a story....

2009-01-16T15:56:00.000-08:00

We all have a story. The stories in our lives shape who we are, what we feel, what we believe. Your story is different then mine. Your story might be filled with alot more happiness, tragedy, ups and downs. We all wake up in the morning and some of us choose how we will feel and react to the happenings of our day. Some of us run on auto-pilot and do what we need to do just to survive the day. Some of us wear our blinders to live in denial of all the negativity around us. Some of us rip off those blinders and tackle the day thinking... what am I going to do differently to change the way I think, feel, react, LIVE???

I have a circle of friends that I am getting to know and become closer with everyday. I'm taking control back from RosieD and trying to forgive her for one of the most heinous things anyone has ever said to me. I'm enjoying my Tinker Tot and loving up the little bit of baby she still has left in her while being blown away by the extent of her intelligence. I'm forever changing and moving forward. I'm always living in the moment, taking it all in, challenging myself to be a better me and wondering where my story leads to next.

Some days I live in fear.....but it's fear that drives me. Some days I live in grief......but it's grief that drives me. Everyday I live with H.O.P.E........but it's hope that helps drive me to believe I can react, feel, change, love, live in all the ways I choose to. Lately, I feel judgemental. I sincerely detest judgemental people but lately, I find myself being one. Maybe judgemental isn't the right word. Maybe, because of my story, my journey, it has shaped the way in which I view the world. I look at myself and Blue Bell, I think of Roo I think of our journey together, what we all went through and had to overcome, and it makes me think, there is nothing in this world we can't accomplish if we set our mind to it. There is nothing we can't achieve.

So, when I see other people making excuses or allowances for things that are clearly unacceptable or because they don't know where to start or they don't know how to change their circumstances, I get angry, I get ^gulp^ whispersunderbreath-judgemental.

My story/journey in life has helped me to see that I can do anything......My girls are capable of doing anything, and yes my story is different then yours, your difficulties, my own, may be the same or different, but we still have choices.

Choice. Roo, didn't have a choice. There's alot of choices she didn't have. She couldn't do simple things in life we take for granted, She couldn't run across the room, She couldn't choose what to eat, She couldn't choose what toy to play with, She couldn't choose to change positions, She couldn't choose to live. God made her the way she was for a reason. And for that reason, I try to revel in every choice I make. The choice of how to react, the choice of how to live, the choice of what I will and will not accept in my life, the choice of something as simple as what to eat. Really, it's all so simple.

There's always fear of climbing the mountain. Climbing it, changing, growing is the hard part. The sweet reward is standing on the top looking at the view. Standing tall, knowing you tackled something so hard, beyond reach, but knowing you survived and grew. I feared to live after Roo died. I feared to feel. I feared to love. Fear is what drove me to climb the mountain. Sometimes, I wonder if I'll ever get to the top. When I look down and get a glimpse of the view, it's breathtaking. Everything I want is right within my reach. My story, my journey, my choice.

I'm going through a period of growing. Peeling back layers of feelings, trying to figure out how, when, why, it will be. Sitting with myself, my feelings, and looking at what choices I have. I'm grateful there are many. I know where I've been, I know the story of my past, it's the story of the here and now, the future, the choice to look forward, up, beyond, and keep climbing. I can move mountains, I can climb mountains, I can dig through them, either way I'll overcome with every choice I make.

Last night, I was proud of myself. It was a shining moment, a ah-ha kind of moment. 2 hard conversations where I was able to remain calm, cool, and collected. RosieD wants to be friends again. I simply can't. I won't....I might be able to forgive her in time...but even forgiveness can not give back the friendship she destroyed with 3 words. Three hateful, spiteful, ugly words. She called me last night and I asked her to stop, don't call, don't write, don't contact me. I'm too busy climbing my mountain, reaching my goals, fulfilling my dreams, to let anyone pull me down.

I felt success, I felt triumphant, and then it came toppling down when my best friend admitted to well...I guess the word is "stalking" me. And that story....is to be told on another day. Cause, I'm holding onto feeling good, proud, and reaching my goals....standing on top of the mountain...and admiring the breath taking view. I am thisclose and nothing, no one, can take it from me or stop me.....

F*LUSHHHHHHHHHHHHHHHHHH

2009-01-14T20:36:00.000-08:00

Friday, December 17, 2004HAPPY BIRTHDAY TO MY PRINCESS Roo!!!!!!!!!!!!!!!!!! I can't believe that Roo is 1 today. When she was born I had no clue the journey we were about to begin. I had no clue that in this last year Roo would help me to heal family relationships, teach me how strong I can be, bring Tinker's Dad back into her life, and touch everyone that meets her. I have learned so much from this little girl of mine, so much about life. I cherish everyday I have with her. I don't think that I will ever be able to truly accept everything that has happened to her. Bu,t I believe that I am ready to live again for my children, to give Roo much love and happiness everyday as she gives to those around her.

All of my friends just absolutely fell in love with her last week. Every minute of the day someone was holding her and she just loved it. I know you all are waiting for details, I'm just so busy living again.Her appt was awesome we go back on Jan 3 for testing. They are going to do the skin biopsy again, evoked potential testing on her eyes, eeg, mri, gi, pulmo, cardio, another swallowing study, we are gonna be busy. The doctor at the clinic put his initial diagnosis as Metabolic encephalopathy, mental retardation, failure to thrive, and short stature. Roo has not really grown since she was 8 months old. Her head circumference is the same, her weight up and down if we could hit 17 lbs and keep going I would be a happy mommy!, and her length has been the same for 4 months. I told the doctor, I know she is the way she is, but I would like a diagnosis to at least have something to go by. He said that there is a 30% chance we may not find one. He will go as far as I want to go in looking. He confirmed what I already knew about this being progressive. He would like to try the mito cocktail or something like that but he wants to do his testing 1st. I told him I was moving up in Feb. and was surprised when he said that the testing can't wait till then.

So, we are on a better path, still not a great one, but better!Roo has been doing OK, she has another ear infection she needs tubes. Her breathing is awful and I'm so sick and tired of bringing her to the doctor and them telling me its because she has no productive cough and that's just the way it is. I mean there's got be something I can do to get that crap out her throat and chest. I have been doing chest pt that her therapist taught me, I can move some of it but not always. I'm doing breathing treatments and just praying it gets better.She's also been having trouble pooping lately. It seems like she is just not strong enough to push it out, poor thing. She just tries so hard and nothing so me and mostly her dad have been helping her out. I tried some mineral oil to see if that would help and after 3 days still nothing so we'll see.

After being in Ohio last week, around my family and friends, I feel a great sense of peace. I know that whatever happens I will be OK, that my girls and I are surrounded by love, and Roo's life will change people and touch them. It's awesome just to watch my friends hold her, I can see in their eyes the love, and how she just literally melts their heart.

updated: Roo did touch so many lives and change people. I am forever grateful for what she gave here on earth. Blue Bells' 1st gym meet was on the 18th last year, this year the championships are on the 18th. I met a Mom and little girl last year at Blue's 1st gym meet. The little baby girl had Mito, what are the odds, I like to believe that many of Blue's meets are on the 18th to remind us that Roo is still with us and proud of the both of us. For the Mom I am able to be despite her loss, for the wonderful, amazing, shining, girl Blue is, despite having watched Roo die a slow death. She would be 5 now, I'm sure fighting with Tinker over my affection and attention, Blue being annoyed by both her little sissies, God chose this path that we all walk. I step back in wonder everyday at how much Tinker and Blue's bond has grown. How Blue has let go of her anger towards Tinker, because she is not Roo, how they both have flourished and grown. I miss Roo so much, I know Blue misses her too, each day the both of us live to honor her and her memory, understanding each other more then most Mother's and daughter's can........We may not talk about Roo much to the people around us, We may act like life has moved on, truth is we don't need to express through words anymore, those around us know how much we have suffered, how much we have fought to come back and learn how to live without Roo and through her memory, how lucky are we, that through a wink, smile, hug, or encouraging words, we know that everyone around us that loves us deeply, also carries our sweet Roo in their hearts.....F*LUSHHHHHHHHHHHblue raz

SHHHHHHHHH..........

2009-01-13T08:48:00.000-08:00

Thursday, May 03, 2007

Yes, I've been quiet. Kind of strange for me but I have been. I haven't talked to anybody, haven't called anybody, haven't posted a "Have a great week!", "Have a sunshine day!", haven't imed anybody, zip, zero, nada. I've thought and re-thought about posting a blog a thousand times and well there's lots of stuff to say but it's all just stuck up in my head rolling around over and over again. Yes, I know some of you miss me, miss my rambling blogs, miss my rambling ims, miss my rambling voice (if your lucky enough to even get me one the phone ha lol) I miss me too. I'm trying to find myself again and get out of this bacteria infected haze I find myself in. OH wait, that's bacteria infected body. Yes, I'm lucky enough to have been infected with MRSA. Don't know what that is looky here Methicillin-resistant Staphylococcus aureus (MRSA) infection Lucky girl am I not???

My life was going along nicely. Working here and there. Running with the buggers. Making good family memories. Yes, I feel the need to make good family memories everyday to make up for the loss, to make up for all the times Mommy was gone at the hospital with sissy, or gone because I was in the hospital myself. And yes, I was doing a pretty darn good job of it all until an alien sprouted on my stomach and decided to try to crawl from the inside out. Cut off at the knees AGAIN. For those "real" life ppl that know me, that have seen this and that happen to me over and over again, I know you all know what I know already, Yes, I'll be OK. Might be another week or month but once again I'll be somewhat happy and joyfully enjoying my pressure filled days of chasing perfection.

Recently, I keep saying I'm in purgatory. I have to be. Because this life of mine. The really good stuff does not outweigh the pure crappiness of some of my life situations. I keep thinking what is it that I did to be stuck here. I keep thinking it's not the decisions I'm making, I don't do self-inflicted drama anymore. Yeah, I got dealt a pretty crappy hand in life in general but me, who has been called a pessimist more times then I can count, has to be a true optimist. Or have an UNending glassful of HOPE. Because ,that is the only way I find myself getting through every day of my life. Hope that it will be better. Hope that physically and emotionally I will be better, Hope, when I see my children's smiling little faces at the end of a really good day, where their Mommy laughed, smiled, cried, danced, hugged, kissed, and screamed you drive me crazy and I love you more then 2000 times, Hope that life WILL BE GOOD, Hope that all this hoping will get me somewhere.

This darn MRSA infection is throwing me physically and emotionally for a great huge loop-de-loop with wayyyyyyyyy too much time on my hands to think. Me being bored is not a good thing in any shape or form. I'm thinking though in the grand scheme of things, I need more then just HOPE. Maybe I need to believe in that hope and that will get me somewhere. Sounds good in theory right??? LOL.

So for all of you missing me, thank you for the I'm missing you and worried about you emails. Thanks for calling me from a private number because if you know me all that well you know that I can't resist answering the phone AT ALL when it says private number. Then, I answer and realize dayum I got nabbed again, roll my eyeballs and 30 seconds into the conversation start thanking God that my phone actually rang. Nope, it wasn't shut off from lack of payment, have the money to pay it just not the will to write out the check or call to pay it. It still works darn thing.

Have I been smiling? Not much. Pleasant to talk too, ummmm if you've imed me or called me, you be the judge. Sick as a dog wishing for death at times, Yep that'd be me. What keeps me going you ask? Hope. One lovely four letter word. H.O.P.E. That today will be a better day. And as I sit here in my house all by myself, cruising the Internet, and avoiding just about everybody, watching my shows on TV after they have been dvred only because I can't watch t.v. without hitting fast forward and get mad when it says live TV, and waiting for the best part of my day, picking my Blue Bell up from school.

Yes, the best part of my day. That 45 min trek I make back and forth. Praying the whole way there that my little tween had a good day, thinking of this and that, and realizing that I'm even becoming too lazy to change the radio station when there's a totally sucky song on, living for the moment when she blasts herself into my car like Kramer on Seinfeld. Yes, that is the moment I live for. Will I have to listen to her whine today and cringe the whole way home thinking, man the rest of this day is gonna SUCK, or if I'm really lucky listen to her sing, smile, and tattle on and on about her day and think to myself, yes this is what life is. Being a MOM to this wonderful kid. The one who throws her underwear on her head and dances around the house to get her Mom to freak out and laugh her ass off all at the same time, because she knows her Mom is pretty sad, not good at faking it, and dayum somebody better resort to some drastic measures to get this women laughing and smiling again. Some might say she has issues, I just say lookee here, She's got me as a Mom, and in the big picture that can be a good and bad thing, where do you think she learned the whole I'll make ya laugh with my tinkerbell underwear on my head stint anyways??

But, I'm rambling and going off on tangents again. In my life, I've always thought of myself under rubble trying to claw my way out. Even before I lost my Roo. Even before she was a thought in my mind. See, being cut off at the knees when life seems to be sailing along quite nicely happens to me A LOT. Yes yes, we all have big, bad things happen to us. That's life. But me, I still want to know why in the hell do I get stuck with the "I've never heard of that" fill in the blank. Why I endlessly keep drawing up the short end of the stick. But I could question that all day long. My life is what it is. And each and every single day I fill it with Hope and wait for whatever it is facing me around the next corner.

Sometimes when I'm lucky, it's my lovely tween just waiting to casually walk by and give me a wet willy in my ear or if I'm lucky having 5 min of quiet time thinking hmmmmmm it's way too quiet around here before she pounces into the room, underwear on head and all, singing away, and laughing my little heart out. Yep, that's the good stuff.

Don't judge, snicker a little, yeah she may have issues, but then again I'm her Mommy.

F*LUSHHHHHHHHHHHHH

My body always remembers......

2009-01-12T19:29:00.000-08:00

My body always remembers no matter how hard I try to keep busy. No matter how hard I try to block out the date. It's there. The 18th. Looming every month as another month gone by since I held my baby. Since I've seen her laugh and smile. Since I've held her curled up in my arms, next to me, rubbing her little hand, and laying cheek to cheek. Sleeping with her in my arms, holding her forehead so that she could rest without the constant movement from her involuntary moments.
My heart is aching. It's so weird to live life, be happy, live normally, get up day after day, get dressed, smile and laugh and make new memories with the girlies, and then wake up one day and feel like all my emotional progress has just been wiped away, but so goes the journey of grief.
I'm finally better from this last round of illness I battled for 3 weeks. More tests on Thurs and possibly a muscle biopsy. It was hard and daunting but I must say that now when I get sick, I don't get depressed. It is a fact of my life. I learned from Roo that I can get through anything. When I'm so struck down physically, I draw from Roo's strength, her spirit, she always fought so hard. I know that no matter what ickie weird infection that may strike me down I will always bounce right back up. Takes time, but I do.
When Roo was alive I always felt if I had enough will for her to live she would. I would guess most mothers would feel the same in that situation. We have to, in order to survive the pain, in order to get by each and everyday of watching lose a little piece of our children, to a horrible disease. I've learned to take that strong emotion, that strong emotional will, and apply it to myself now when I get sick. It is true what they say, if you think good things, they will happen.
On a lighter note, because yes, life has been bright, shiny, and happy lately!!!! Blue
Bell got straight A's again and Tinker Tot is closer to being home full time!!! Oh, my girlies are growing up!! I have a busy day lying ahead of me and needed to get my grief feelings out, to start my day. So, I guess this is a selfish blog, it's just for me, because in my real life, I can't walk around today saying, ohhhh how my heart just hurts today, ohhh Roo is on my mind with every breath I take, with every beat of my heart, with every thought passing through my mind.

Honestly, this past week, I've been shiny and upbeat, feeling SO MUCH BETTER PHYSICALLY PRAISE GOD!!! and living in the moment. Following the new journey that God has placed before me, cherishing, and loving every moment of it. What I do with my days, lifts my spirit, and helps me to be able to give back into the world. Helps the girlies to see their Mommy in a new light, in a different way, and the positive impact far outweighs anything else.
I have had peace and healing come into my heart. The positive in my life, the steps forward I am making are truly remarkable. The way I view the world through my eyes is forever changed because of my Roo. I see so much goodness, I see the potential in every child that is close to me, I can see past so much to see the goodness, something I wasn't ever able to do before. Isn't it amazing how one little tiny girl change so much in so short a time?????
No matter how hard I try to forget she is no longer here. No matter how hard I try to forget the pain, no matter how hard I strive to maintain the positive and goodness I am surrounded by, my body never forgets. It hurts, it stings, but also where I am now, I take a moment feel it, refocus, stand back up tall, take a breath wipe away my tears, and know that my baby is shining down on me, through me, through her sissies, proud of us all, and saying GO MOMMY GO!!! Grab your dreams, grab your ambition, grab that happiness that lies right there before you, and I do. I'm holding on to it tightly, this journey God has placed before me, to help me to heal, and at the same time help others by reaching out through love.
No matter how hard I try to forget, what I do with my days, everyday, is the same thing I did for my Roo when she was alive here on earth. It's positive, it's giving, it's providing that strong sense of will to others, it's adding goodness to the world. it's emotional, it's giving, it's draining, BUT IT GIVES BACK SO MUCH MORE. Fills my spirit, fills my emotional emptiness, fills my heart.
Let the day begin, no more tears, there is much work to be done. I'll be smiling today, breathing, enjoying my healthy body (for the moment) and watch little miracles happen.
No matter how hard I try to forget, my body always remembers, and my spirit gets stronger as I feel God and Roo give me the will to reach my goals and dreams.
How wonderfully blessed am I??? I can't even put it into words. I miss Roo, I miss Tinker(she's at the ex-idiots), Blue is finally sleeping........I'm sitting here bracing myself for the 18th......This month...the 18th...I'll be sitting at Blue's gym meet, cheering her on, holding my breath as she begins each routine...thinking how things have come full circle. Blue started back at gym the day we buried Roo, now, she's a star gymnast, shining and beaming, reaching the podium, her room filled with medals and trophies. A young girl that works so hard, loves what she can do, and has a greater understanding on what a gift it is to be able to flip, fly, and twirl. All the while, knowing our Roo, is smiling down, watching us, watching me beam with pride, my heart swell with joy, as Blue continues to succeed and impress everyone with her will and spirit....it's no wonder those 2 had a bond like no other............2 sisters...one born into a broken body with a huge spirit...and one that is finally able to do what she loves...in memory of her sissy.....one word that sums up my life....BITTERSWEET. F*LUSHHHHHHHHHHHHHHHHHH mango martini.

Could it be over?

2009-01-11T09:41:00.000-08:00

Sometimes I feel like my life is over. Between the loss of my Roo and the not so good relationships and friendships I've had it's hard to believe there is still hope. I've lived here for 3 1/2 yrs now and it's just recently, I finally feel I'm trying to build myself a life. A life filled with positive people. Some days, I just go through the motions of living and for awhile I was perfectly satisfied with that. Always taking steps forward but almost sleep-walking through life. My life has never been traditional neither in my childhood or adulthood. I talked with my Dad for a long time yesterday. I love talking to my Dad. He is a man that is filled with wisdom and has an amazing capacity for being objective. He said to me, "I don't know what normal is but it sounds like you've finally found the way to balance yours." How true is that.

I'm constantly analyzing things. How I feel, Am I a good Mother?, is this person or that person a good influence in my life and the girlies, what are my goals, how to achieve them......One thing I've done since Roo died was concentrate all my energy on Blue Bell and Tinker Tot. Putting everything I have into them. It's truly the 1st time I've been a single parent and it's been hard but also I've come to realize something, I can and am doing quite well.

I'm a person that doesn't like to be alone. I know this and accept it. My Mother jumped from relationship to relationship growing up and it's a pattern I have myself. After Roo though, I know what I will not accept and will accept in a relationship and I've decided I won't settle for anything less. Living life and appearing to live life are 2 different things. I'm a highly emotional person duh LOL if you read my ramblings that's not hard to figure out. Stepping out of my comfort zone is something I'm always doing. Something my Dad taught me long ago.......with graphs and pictures even LOL. Thing is though, I've been stepping out of my comfort zone.....but keeping my emotions locked up.

Now, few have found the key to get me to open up. Few have been brave and patient enough to stand by me as they witness my moods and emotions fluctuate all over the place. I want to be able to share my life with someone and be as open as I know I can be. But, when I open up, let down my walls, it scares the living crap out of me, and the self-doubt that doesn't exist comes pouring out. Right now, it's one of the biggest hurdles I'm trying to overcome. Because, I can't endure any more disappointment. I don't want to endure anymore hurt. But, I wear my heart on my sleeve, when I open it up. The hope is exhilarating. The doubt is crippling. Two extremes. How do I balance that?

I have no patience in waiting to see what will be or what is. I want to know NOW but that's not how life works. I am choosing to walk around with myself exposed to the world right now. Sharing my feelings in real life and here in this blog. I feel vulnerable. I don't like it. But it's necessary. Because my life is NOT over. It's a new beginning. It's a fresh start. A new chapter. I've just always been the type of person to read the last page of a new book to see how it ends before I even know how it began.

My emotions are all over the place. And for the most part they are good. Happy, hopeful, smiling, laughing..........and I want to hold onto all of that as firmly as I can. Because sometimes there are happy endings right????

F*Lushhhhhhhhhhhhhh

Please take a looky

2009-01-11T08:42:00.000-08:00

and Vote.....I'm not all that good to linking back and all the fancy jazzy bloggy stuff yet......But, this blog c jane enjoy it should definitely should not lose to a blog about cars! Good Luck Cjane!

F*Lush

It's Boring....

2009-01-10T15:48:00.000-08:00

It's been one of those days. Snowed in, Blue Bell and Tinker Tot playing together, fighting, playing together fighting. I finally made Tinker lay down with me and take a nap since she's been sick lately. She's 6 and still will take a 3 hr nap, go to bed on time, and still sleep 12hrs, and still need a nap. Blue Bell never sleeps. She's never slept through the night since the day she was born and despite medication to help, ADHD and PTSD, she still never sleeps. She was up at 2am last night trying to steal her DS from under my arm. Yes, I was sleeping with it like it was my most favorite stuffed animal. It did keep the girlies quiet for a full 30 mins yesterday....I do have rules though...No DS in the bedroom! Cause I know Blue all too well. She'll wake up and play that thing ALL NIGHT LONG..and be a major cranky tween ALL DAY LONG.

Today has been boring. Boring......never thought I would come to a point in my life where it was BORING. I love boring...just about as much as I love technology and the DS. It's taken me a long time to accept boring as our "new normal." I was used to our lives being dictated on how Roo was doing everyday. Then, I felt guilty after she was gone. There were no medical companies to scream at, "Where is our 02 tank?? WE NEED IT NOW!" There were no 20 billion phone calls a day to fight with insurance companies over new equipment, no PT, no OT, no doctors appointments to keep up with, no going through her dresser of supplies figuring out what I needed to order next. No 90 min routine of drawing up meds in syringes to put through her g-tube, no 30 min. neb txs, no setting up her feeding bag and calculating how long the feeding pump should run, no vest txs, no changing of her broviac and g-tube dressing......are you getting a picture here?

Now, I'm busy listening to Blue and Tinker fight and play. One minute the love each other the next there's yelling. I love every time one of them comes to me and says sissy did this, sissy did that, while I sit and listen to their side of the story, like I didn't hear the whole sissy disagreement cause I'm sitting right in the next room. Then I tell the both of them....get along or ELSE!!! Ya, that tactic always works well.

I love that my girls play together and fight together. Their lives aren't dictated by how many seizures Roo had today, Blue Bell isn't asking me over and over again if she can empty Roo's foley bag, Tinker Tot isn't sequestered away at her Dad's house. Their fighting over silly sissy stuff. "Normal" sibling stuff. Their lives are just beginning. I feared for so long that Blue wouldn't be able to get her childhood back. In some ways, she won't. She witnessed death at such a young age, close up and personal. Tinker Tot's memories are faded and foggy at best.

Hopefully, this will be the worst tragedy of my life. In my 30s....losing my Roo......Hopefully, the chapters of Blue Bell's and Tinker Tot's life will be filled with more JOY then heartache. While I do WANT TO RIP OUT MY HAIR every time I hear "MOOOOOOOOM! Sissy isn't playing NICE!!" I'm so forever grateful that I have these 2 wonderful, bright, annoying, playful, do they know what NO means?, squishy, lovie, little girls.

Today, like every new day, is a new page in our journey. A fresh page waiting to be written. It's just taken awhile for this Mom to get used to the page being written by Blue and Tinker. And not filled up by Roo. It is their time to SHINE.....or fight....wherever the moment takes them. Today was boring......"normal" whatever you want to call it. The best part though.....was when they were quiet for 35 mins....then came bursting in the room, their faces covered in make-up....and I just had to watch their show, play, they made up. Being snowed in isn't all that bad. It was wonderful to watch their imaginations work together.....even though at the end of the play they smacked each other.

F*LUSHHHHHHHHHHHHH

I cry for Roo

2009-01-09T18:06:00.000-08:00

I cry for you today sweet Roo.

So, here I sit with tears streaming down my face. I'm tired. Tired of many things and yet grateful for so many things. I feel conflicted inside I don't know I just guess it's where I am in my grief. I just sat and watched the video I made for Roo. I watch it everyday and most days it makes me happy but today it made me cry. Yes ,the 18th is coming, I am more emotional. Feelings that I thought I could bury and let go have reared their ugly head in my heart.

I don't have hatred, I don't have regret, I have a bit of anger, but that's only because of judgements placed on me by others. Now, I should be the 1st to know that I should not let what others think about me bother me. What bothers me so much and what I try so hard NOT to think about is the perception of what people think happened at the end of your life. I fought so hard for you, my baby, with every ounce of my being and soul. I spent so many hours on the phone with doctors, hours at the specialists, hours doing research, hours holding you while you seized and not being able to do a dayum thing about it, hours laying next to you watching you sleep praying out to GOD please SAVE MY BABY. When I was still in thatstinkinstate I believed that if I moved to Ohio, got better doctors, and all the medical equipment I needed to keep you alive that you would LIVE. I believed I could save you Roo, I believed with all the love I had for my sweet girl, I could SAVE MY ROO.

It wasn't until the day when I met with her epilepsy neuro and her metabolic neuro and they told me that she had atrophy of her brain, meaning it was shrinking and liquefying, and that she only had a year or two to live that the fear in me began. I had fear to let myself really feel love for her, knowing that she would be gone. I had fear about what it would be like to watch this horrible disease claim her life. I fought so HARD with every bit of my heart and soul. SHE FOUGHT SO HARD!!!! Even when I had to bring her to the hospital when I promised her I would never do that to her again, I did it because I needed my baby not to be in pain or to suffer.

The last 3 months of her life she screamed and screamed and seized and seized and struggled for every breath she took. We watched her heart rate run at 200 and held our breath wondering how long could her little heart stand that till it gave out. Then we would watch it plummet down to 60, 40, 30 and hold our breath and wonder is this it??? Is her little heart going to stop??? Over and Over and Over again for 3 months we watched, we held our breath, we prayed, we cried, what was so hard at the end? We couldn't hold her in our arms. Her breathing was so bad she couldn't tolerate us holding her. So, I would lay next to her cheek to cheek and hold her little hand and rub it. She would open her eyes and look at us and know we were there. She was suffering so bad but she would still give us her beautiful smile.

Today my arms are empty and I would give anything in the world to feel her one more time. I got my child the best doctors, nurses, equipment, I struggled so hard in making the decision to get her tummy surgery done in fear that by helping her I would lose her. But, she was strong she pulled through, and I saved her from dying from aspiration pneumonia. I got her vest, it helped with her lungs, and even in the end when her lungs were so bad we still used it because when she was seizing non stop and screaming, the comfort of the vest vibrations would soothe her.

She slipped away more times then I can count and each time we thought THIS IS IT!! They would call me in the room and bam! She would come right back. She fought and hung on day after day. Each day, we thought, this is the day and another day passed and she was still here. It was so frustrating to watch her hurt and not want to let her go. I finally stopped saying to myself, today is the day, and just soaked up every minute she was with us. I got mad at her.

I'm so sorry, Roo, I got mad at you, Mommy just didn't understand why you chose to suffer and hang on so long, I just couldn't bear it. I finally realized, you had your own plan, and you were going to go HOME in your own way. I made peace and said OK baby, you and God know when your time is, and I will stay by your side, I will sing you your song to help you stop crying, I will hold your head so you can fall asleep, I will hold your arm to keep it from moving so you can rest sweet baby. It hurts so bad to know that I knew, your Daddy knew, your nurses knew, everyone around you knew that you were going to die and some people think that Mommy wanted that for you! It hurts Roo, it hurts! I sit here and cry, my heart breaks, and I'm mad at myself for letting myself feel hurt by this. Roo, you know how hard mommy fought for your life. To give you the best life! But God's plan was for you to be here only a short time. Today is one of the days I don't understand it. I don't want to question God and say why?? why my baby??? why me?? why my daughters?? why do we all have to have this pain and why did you have to have that horrible disease??? I don't want to question why! I want everybody to see that from the day you were born that I fought for you to live. Even when we were in thatstinkingstate and they didn't want to give you your feeding tube because the doctors said you were terminal I wouldn't accept that! I fought and begged and pleaded for that tube! And, in the end that's what people think I did to make you leave. Roo how can they not understand???????? I don't get it! Losing you, your journey here on earth is the hardest most painful experience of my life. I'm sitting her just crying, I tell myself all that matters is that I know that I DID EVERYTHING I COULD! I know the only thing that matters is that you know that Mommy tried her best to give you the most and to save you. I know with every sign you show me your telling me it's OK.

Some days I just can't stand this pain. I can't stand feeling selfish. I want you back here in my arms, I can't stand feeling guilty for wanting you back, when you suffered so much at the end. I can't stand that I couldn't protect you and things were made so much worse. It shouldn't matter to me what people think because I know the truth. I know what's in my heart, I'm the one that was there. No one can know what this pain is like. Only other mothers that have lost their children. Especially, the mothers that have lost their children to this ugly disease.

Roo, I know you wouldn't want me to feel so sad, sitting here crying my eyes, and heart out. I know you don't want that for Mommy. I know you want Mommy to have peace and feel joy again and I try for you, Roo, I do. But, then I have my days like today where the tears just keep flowing and my heart is just in pieces and I wish that people could just see that you fought so hard to stay with us, you really really did, but God needed you back with him. All Mommy could do was make you comfortable on your journey back to God and heaven. I didn't know until about a month after you died that day there was no day nurse. I knew you were going to leave when you were alone, which was pretty hard to do being that you were never alone ever at the end. I know you must have walked right into heaven after the night nurse left. When you knew, no one else would be coming ,and that me , Daddy, and sissy were still sleeping. You lil schooch! I knew that you were going to go on your own time. I think you knew Mommy wouldn't be able to stand the memory of your last breath.

I can't stand the memory in my head of waking up and looking up at Daddy checking for your heart beat with the stethoscope already knowing that you were GONE. Nobody has to live with that memory or image in their head. If only they knew Roo, how then, could they say that I wanted that for you???? I try so hard to remember the good times and slowly but surely I can............but the memory that haunts me the most is the day I woke up and you were gone. The way you looked..........I can't stand the memory in my mind and nobody has to live with that but me and Daddy.

Daddy gave you your last bath that day. Mommy just couldn't do it and I knew it was important for Daddy to have that special time with you. It felt like forever, he was washing you, and giving you your last bath. I could hear him crying through the bathroom. Then, in the bedroom it felt like it took him forever to get you dressed. In your orange pooh bear outfit, Mommy's favorite. Daddy made you look so beautiful. You smelled so pretty with your special lotion. Mommy still wears it everyday so i have a little bit of you with me. I held you and held you, knowing that soon I had to call the funeral home. I just couldn't bear to have them come and take you from me. I wrapped you in your pooh bear blanket, took a deep breath, I remember carrying you downstairs, and placing you on the stretcher. You looked so small on that big stretcher. I kissed your sweet smelling cheek and told you I would see you again in a day for the last time. After that, I don't really remember anything. I placed you on that stretcher and for the weeks and months following my mind, heart, and soul went with you.

I hurt so bad, I hurt the people around me, I couldn't stand living without you, I didn't want to live anymore. But you and God kept telling me I had to. I had to, your sisters needed me. So, Mommy reached out, got help, and since then I have been better. I have learned how to grieve you and miss you in a better way. Without hurting myself or hurting those around me. When my tears fall, I'm by myself. I keep this all inside. Those around me know I'm hurting but they cannot understand and most times I don't let them see it. Today here I am, typing it all out, putting it out there.

I shouldn't care about those who judge me. For there is only one judgement that counts and that is Gods. I would never do anything that would compromise me getting into heaven because I have known and always knew that is where I will be reunited with my baby. I will get to see her whole and perfect and there is nothing I will or could do to keep that from happening. So, now I live each day to make all of my girls proud. It is so hard some days and yes the days with peace come a little more with time. But, I will always have these days when I cry for my sweet Roo. My sweet love. when I yearn for her smell, to hold her, to see her smile, hear her laugh, brush her hair, hear her cry because she's by herself and wants company, see her try so hard to play, see her try so hard to live.

Roo please help Mommy today. I don't want to cry all day. but I'm crying for you!!! I miss you soooooo much!!! No one will ever know, I just feel like no matter what I do no one will ever understand, and it bothers Mommy so much that people think these things that are sooooo wrong! I cry for you today my sweet Roo. Mommy promises that I will try to be happy, to make each day good, and I know that on these days, God and you, will give me the strength to withstand the pain, to walk through it, to be able to overcome some of it. I cry for you today sweet Roo. I sit here and I cry..............no one will ever know or understand this pain. All mommy can do is know I did my best, continue everyday to do my best, make you proud of me, and be a good person. I love you so much Roo! I imagine you chasing those butterflies and being with all the other angel babies that have gone to heaven whom mommy loves so much. I can hear you, saying to my heart, mommy don't cry because where you are you are free from pain and happy.

I cry for you today sweet Roo. You and God know what my prayers are and sometimes they aren't quick to be answered but I know that you will answer these prayers of mine. Till we are able to hold each other again sweet girl.....

F*Lushhhhhhhhhhhhhhhhh

Breathe In...Breathe out....

2009-01-08T14:22:00.000-08:00

Tuesday, November 13, 2007
Breathe in, Breathe out..........that is my mantra lately. Life has been rolling along smoothly with a few bumps here and there. It seems as though the holidays, fall, winter, Roo boo boo's 4Th birthday all have snuck up on me FAST. Most likely because I've been so busy with the girlies to even catch my breath or have any longer then 10 mins at a time to really think about things.....or maybe just because I haven't let my mind drift there.....Just Yet.....till last night.

Last night the anxiety hit FULL FORCE. I mean straight on hit the wall going 100mph. It's not like I haven't been here before. 3yrs ago I was celebrating Thanksgiving with Tinker Tot 1200 miles away, Blue Bell with a not so present Mooma, Mumzie, or Moulia as she likes to call me (don't know where she learned to come up with nicknames like that LOL), and Roo recovering from her 1st long term hospitalization from the yucky RSV and proving to ALL of us that there was a ton of fight in her spirit against the broken body she was born into. 2 yrs ago, celebrating Thanksgiving, knowing it was going to be Roo's last as she had taken a turn for the worst, and trying to find some inner balance inside myself that life would never ever be the same, and feeling so robbed, lost, angry, and just wanting to hold all 3 of my girls as close as I could. 1 yr ago, celebrating Thanksgiving, feeling numb, sad, incomplete, with a brave smile on my face for the girlies, crying inside, screaming for my baby to be back with us for just one more minute.
Breathe in, Breathe out. Now, all the 2nds are upon us. The year of 2nd holidays without Roo in this new normal we have settled into.....life without her. She would have been 4 next month. Last night, as I was sitting at gymnastics with my 5yr old Tinker Tot in my arms, as I tickled her back, and her sweet little face was cuddled up to mine, it really hit me. Wow, they would be playing together, sitting here together, coloring next to each other, fighting over Mama's lap. Tinker , that kid never ceases to amaze me. I was soooooo looking forward to seeing her yesterday at gym. RosieD aka Step-mom was coaching last night so it was just me and Tinker for 2hrs. I needed to cuddle her so badly, and kissie her, and sing with her. She really knocks my socks off in so many different ways. She's so silly and inquisitive. Sometimes she will come out and ask the silliest questions just to see how we will react and other times she asks the most mind-blowing questions.

Last night was all about the mind-blowing questions. How do I explain how Roo is still in our lives but we are living in the present? I don't know if I can find the right words to describe it. Sometimes on occasion I will bring Roo up in conversation, Blue Bell barely talks about her, Tinker, she talks about Roo SO MUCH. Maybe it's her age and since she doesn't really remember as clearly as Blue and I do she thinks about things and tries to wrap her little 5yr old Tinky mind around them.

So, there we were last night at gym and she's coloring. I'm sitting there watching Blue, letting my mind wander to the other 80 billion things I think about, ya know, laundry, appts today, Blue's 1st gym meet on Sunday, Xmas, why did I wear this uncomfortable shirt yada yada........Tinker turns to me and says......"Mommy, what will happen if the world dies?" ummmm........ahhhhhhhh.......well Tinker.........Breathe in, Breathe out........My eyes dart over to RosieD coaching gym, looks exhausting but wishing that I was coaching those 20 little gymnasts and spotting their tricks. Well, Tinker, I think if the world was going to die that God and Jesus would come and get us 1st and bring us home to heaven......but I don't think that's going to happen for a longggggg time, and well I think that's a good question for Dada, we'll ask him.

That satisfied her enough for about 2 minutes till the next question came. She put her coloring away, climbed back up on my lap and cuddled up, and said, "Mommy, do you worry about Roo?" There I am thinking to myself.........ummm ahhhhh where in the world does she come up with this stuff and why always when I'm battling back the grief demon. Well, no Tinker, not at all. She's in Heaven, in a perfect body, you don't have to worry about anything there. "Well, Mom I worry about my family."........O.K. now my heart is breaking.....Tinker why is that??? Well, I haven't seen my Grandma in awhile.......she's not in Heaven Tinker Tot and ummm didn't you just see her 2 weeks ago at sissie's bday party???? OHHH Yeah!!! That's right!! I forgot......and ummm isn't she coming over with your other Grandma for Thanksgiving just like they do every year.........OHH YEAH!!! That's right!!!! Tinker laughs, giggles, and does some more of her deep down belly laughing......SILLY ME!!!

Back to coloring she goes. And there I sit thinking boy this is going to be a longgggggg 2 hrs if she keeps this up. 5 mins passes........."Mommy?" Yes, Tinker? "You cry at xmas time." Yes, Tink, yes I do. "Cause you miss Roo?" Yes, especially around Xmas cause her birthday is right around that time too Tinker.

She crawls back up on my lap.......cuddles herself into me some more......lays in my arms like my big baby.........we snuggle.....I watch Blue hit her floor routine in stride......She's looking good for the meet........."Mommy?' Yes, Tinker? We should get Roo a High School Musical Cake this year!!!!! Ok. more cuddles.......I watch Blue pike her vault....that needs a little tweaking before the meet........."Mommy?" Yes, Tinker. Roo is going to be 4 right? Yep. Well, then her cake has to be Blue's Clue's cause 4yrs olds like that better.....not me though cause I'm 5 and I'm a much more big girl.......Yes, Tinker, Yes you are.

I look up gym is done. RosieD comes over exhausted from her work out with the little gymnasts. I'm just as exhausted too though, in a different way. I tell her about the oh so important question Dada must answer for Tinker Tot.......we walk outside get the girlies in the car.......I tell her about Tinker's and my conversation. She listens attentively like always......stands there patiently while the little twerpies are bugging each other in the car........I think she knows my anxiety has started.

We go off on our separate ways. Blue gets in the car and talks and talks and talks on the way home. This girl said that at gym, this girl did this......uh huh, uh huh.......I listen. Breathe in, Breathe out. I will make it through the holidays.....I will make it through Roo's bday, I will make it through the dreadful winter. I will because I HAVE TO, for the girlies, and I will because I CAN. With some tears, moments of happiness captured here and there, watching my girls grow, answering Tinker tot's breath taking questions every now and then. All while remembering, Breathe in, Breathe out..........just breathe..........

F*Lushhhhhhhhhhhhhhhh

more updated post coming soon.

Finding Balance Part 1

2009-01-07T16:58:00.000-08:00

Wednesday, May 30, 2007

Finding Balance part 1
Finding balance is proving to more challenging lately. I have 2 wonderful, amazing, beautiful, and brilliant daughters. For 2 1/2yrs they were sharing their childhood together, day in, day out. Then Roo came along and all of our lives were tossed upside down and all around and this Mommy had to make some pretty tough choices. I've had to make some pretty hard decisions over the past 3 yrs and some of them have been really great for my girls and others well not so great.
Blue Bell, wow, what a smart little whippersnapper that kid is. I'll never forget the day she asked me if Roo was going to die. We didn't even have a dx for Roo yet but Blue she just knew in her heart that something wasn't right. Blue had such a strong connection and bond with Roo it surpasses anything in life I've ever seen between 2 people. She was the 1st one to get Roo to smile. Roo didn't smile until she was about 6 months old and when she started well it was a lot of effort and goofiness to get her to do it again. Blue was also the 1st one to get Roo to laugh, somewhere between 7 and 8 months old. I was in the other room and thought Roo was crying. I knew Blue Bell had something to do with that noise I was hearing and came storming into the living room to find Blue laying next to her sissie, singing to her, and Roo laughing up a storm. What an exciting day!!!!! I said BB, how did you do that?????? Well Mommy I just sang her Twinkle Twinkle it always gets me and Tinker to laugh and smile when you sing it silly. Roo, the schooch that she is (I hate saying was) would only smile the 1st time we would sing it to her. If you weren't there in the room when someone started singing the song and thought you could get another smile you were wrong. Just once, that's it no repeat. So, us girls, being the strong-willed girlies we are got out all our bells and whistles and did everything silly you could imagine and before you knew it Roo was laughing and smiling alllllllllll the time. Finally, after months of waiting for her cooing, smiling, laughing, things that all should have happened in the 1st months of her life, all came together, and it was amazing and beautiful.
Well, as usual I digress. I was going to write about this past weekend and having to chose between doing this or that to make the Tinker happy or Blue. Didn't know all that stuff about Roo was going to come out but there it is. F*Lushhhhhhhhhh

HI, HOW ARE YOU????!!!!!

2009-01-06T15:06:00.000-08:00

I talked to RosieD tonight for the 1st time in 7 months. RosieD aka. Step-Mom, new wife to the ex, oh and one of my ex-closest friends. As I was driving home in the worst ice storm of the season my phone rang. It was an incoming call from RosieD's cell phone. The same one she called my daughter from on Friday night and told her to NEVEREVER call the cell phone again. mmkay. I answered thinking Tinker Tot was calling me. See, RosieD, she never plays her stalker like games teetering on the edge of what's legal and not legal when she knows the guardian can be called immediately. RosieD, one of my closest, best, girlfriends that walked by my side through the death of Roo, held my hand as I cried, loves Tinker Tot as her own.....till 7 months ago. I answered the phone and there was her Rosie voice in my ear. Truth be told, I miss her. But, I can never forgive her for her actions over the past year. She was calling to tell me she finally brought Tinker to the doctor for her snotty runny ear....ya it's only been 2 weeks, and that Tinker's ringworm is better but only because she was putting bleach on it. BLEACH! Now, being the germaphobic I am I did think about spraying Tinker's ringworm with lysol...oh yes, I did....but settled on spraying every inch of myself instead.

35 mins I listened to RosieD tattle on about the trip to the doctor with Tinker and this and that. 35 mins. of driving through an ice storm seeing accident after accident and concentrating to keep my own darn car on the road. Smart to talk and drive...ummmm no so much. Did it keep me from being the crazy lunatic I wanted to be and tear RosieD a new one and stop pretending like the words she said to me 7 months ago didn't exist. yah.

RosieD and I used to talk everyday. Tinker Tot has grown up knowing both her "Moms" loved each other very much. There used to be movies together, roller skating, scrapbooking, dinners at each other's houses...a mixed family, non-traditional, but filled with love. I thought it was one of the greatest gifts Roo brought us. I miss her and still love her but I can't forgive what she said to me over the past year, mostly 3 words she said to me, at Tinker's soccer game.

RosieD never knew the me before Roo. She knew the me during the biggest crisis of my life. And it wasn't until I started gaining more strength physically and emotionally, that I realized how controlling she was. How shocked I was when my eyes were finally open, that she actually enjoyed me being weak. It makes me so sad to think how our friendship disintegrated because of her insecurities and jealousy. It makes me angry...but also so sad. Tonight, talking about Tinker with her, was like the good ole days. Except, we were talking about Tinker Tot's recent bout of illnesses and what needs to be done. I really think for RosieD, she felt it was a way of getting back into our friendship, it was like she didn't skip a beat, like the words that can NEVEREVER be forgiven can be unsaid. They can't. She said them they're out there. I'll talk to her because my Tinker is VERY SICK. I'll listen to what she's been doing to help nurse Tinker back to health so I know what Tinker will be like when I see her tomorrow.

14 days of a runny, snotty, ear.....12 weeks of ringworm in their home....her daughter has it on her face, arms, back, and head. I had to fight RosieD on getting tubes in Tinker's ears when she was 3. She thought I was overreacting. Ya know, I overreacted about everything because of Roo....whateva....I did work in a hospital for years....it's not like I'm stupid. Tonight, she says to me, Thank God, Thank God for her tubes......I'm thinking ya no thanks to you....she wanted her to go through allergy testing 1st....40 pricks in her back to make sure she really needed tubes and a T&A.

I know RosieD's true heart and spirit. I know we will never be friends again. I know that I will never be able to forgive her for what she said. I miss the person she pretended to be though. The good friend that was always there to laugh with me, cry with me, encourage each other, make new memories with all 5 of our girls together. I can't risk letting my guard down, no matter how much I miss who I thought she was. She made sure Tinker was in the room the whole time we were talking. I know Tinker's little heart probably jumped with joy......Tinker doesn't know the words she said that crushed my heart. Tinker is only 6. One day Tinker will be older and will see her step-mom and me in a light where all our strengths and weaknesses shine through. She will ask again what happened that one fateful day. And I, being the good person I am, will tell her once again......she never needs to know what RosieD said to me......because they love each other....and I will never take that away........by repeating those 3 little words.

watermelontini

F*Lushhhhhhhhhhhhhhhh

She went home....

2009-01-05T11:44:00.000-08:00

October 2008

Tinker Tot was just picked up by her Dad. I won't see her again till Weds. We had 5 glorious days together. We got costumes for Halloween, pumpkins, there was gymnastics, smiles, laughter, cuddles.
I spent the last few days cleaning out the basement. My life was literally in shambles after Roo died. I'm still sorting through it all emotionally and in the physical sense. Sometimes, I think I'm OK with letting things that were Roo's go. As I was sorting through boxes I found, her rattle that also used to be Tinker's, her Strawberry Shortcake Jammies, syringes, her chart, stuffed animals, and the only picture that I had of her and Blue Bell on her 1st Halloween that I thought was long lost.
Weds. night I sat at gym watching Blue Bell and Tinker Tot and realized that I had not felt anything with the 18th quickly approaching. Halloween is coming the start of the holidays so to speak and the start of grieving in so many ways through memories. It's just when I think I have a handle on things, I don't. I haven't cried in months and well I just had a total meltdown. Tears are burning my cheeks, my heart is pounding, my head feels like its going to burst. I'm mourning my Roo and the piece of me that died with her.
In real life, there are few people that I talk to about her. Few people, that I feel understand. I get mean when I am hurting so bad inside and I hate that part of myself. I want to change it, I want the hurt to go away, but I know that the waves of grief will continue to hit me unexpectedly like this for the rest of my life. Where I was laughing, enjoying Blue and Tinker just 2 days ago, feeling peace, I should have known it was the calm before the emotional storm. Time does heal wounds in some ways. Roo was a piece of me, is a piece of me, that's missing. True, I'm a better, stronger, person. But, I don't like the part of me that hurts. I don't like the part of me that is selfish for wanting her back when she suffered so much. I don't like that I've had to fight so hard to just have some normalcy in my life.
I know Roo wouldn't want me sitting her crying my eyeballs out, I know she wouldn't want me sitting here with all this pain in my soul, I know she wants me to be Happy. I have been happy, I've been enjoying Blue and Tinker, I've been trying the best I can. Pushing and stuffing the feelings down inside and pretending they don't exist isn't a way of dealing with the grief though, but it's the only way I know how. I don't want Tinker Tot to see me grieving and it always happens that we have her on the 18th, making it so hard for me to hide my pain. As soon as she left tonight, I blew up, and then just sat and cried as Blue and I held each other. Blue said, "Mommy, I would rather see you cry then you be short with me." She also said, "Mommy, if you cry I will hold you till you feel better." That makes me feel so guilty.
When Roo was alive I cried in front of more people then I was comfortable with but never in front of Blue Bell. One of the many reasons I sent Tinker Tot to stay with her Dad was because I didn't want her to have a Mommy who cried everyday. **wiping tear from my cheek**
Blue Bell gave me all reasons why God has chosen this path for us. Her faith is so strong when mine is so weak. She said, "God has chosen this for us. Mommy, I know you hurt so bad, but it's all for a reason....." and then she listed as many as she could think of and yes, they were all good.
Maybe another one right now at this time is for Blue to see my crying. To know, it's OK to cry when you hurt instead of just being angry. That it's OK to feel totally overwhelmed at times with goodness and pain all at once that the only way to express it is through tears.
Halloween is coming. I'm fighting so many battles right now. I'm ripping off the emotional band aid and going through Roo's things. The memories that I was afraid were getting dim from time are clear and brisk in my mind.
Halloween is coming. That night I'll be trick or treating with my girls. I'll be walking house to house seeing everyone's reaction to the girlie's costumes and hear them say trick or treat and thank you. I'll be smiling, remembering, wishing, thanking, hopeful, reminiscent, hurting. I'll be me.....just missing my piece.
F*Lushhhhhhhhhhhhhhhhhhhhh

Maybe. Just Maybe.

2009-01-01T16:22:00.000-08:00

Maybe this will be my year. I HOPE this will be my year. I was going to write today about the positives in my life. I was going to wake up with a zest for the new year. And then, I cried. I didn't get to talk to Tinker Tot today. Usually, no big deal if I go one day without talking to her. But when I can't talk to her because someone is being spiteful on purpose well that's a different story. It's OK I'll survive. She was supposed to spend New Year's Eve and today with me and Blue. I had to make one of those really hard choices that splits my heart in two. AGAIN. While it was the best choice for all of us, it really stings that I couldn't talk to her today.

On a lighter note, I am working on writing my goals and dreams down for this year. Blue Bell showed me her list yesterday. Of course, it was all centered around gymnastics. It was a really good list of goals. I don't know where she learned how to do that. Write down goals, positives, and go for them! I know that in the short term things in my life might be rough and choppy. There will be those moments of soaking in the joy. I know the one goal I set for myself 2 yrs is about to come to fruition. When it does, I'll be dancing on the ceiling LOL. Till then, well today, this moment, I'm hanging on with my fingertips. Telling myself over and over again. I will not snap, I will not be pushed down, I will not be bullied, I will be the BETTER PERSON no matter how much I want to scream.

F*LUSHHHHHHHHHHHHHHHHH

2008

2008-12-31T15:39:00.000-08:00

Jan. I started to become more "me." Stronger, determined, happy, making people laugh, and giving.
Feb. RosieD aka. controlling new wife of ex....started to become jealous of my new found strength and self. Blue achieved success in gymnastics, school, and overcoming her grief. Tinker Tot became VERY clingy and confirmed Blue's 2 step theory.
March I meant to go to Roo's grave to do something special for her 2 yr Angel Day but we had a HUGE snowstorm. My friend gave me a gift of some of her video's set to music. We cried, had cake, and talked about our fav. memories. Ex and RosieD went on a European Vaca leaving Tinker Tot with me for 12 days.
April Tinker Tot turned 6, Blue Bell turned 7, and I turned 32. Blue had her 1st Bday party in years....one of my most fav memories of this year.
May Lots of gym meets....Blue shocking me more in her competitive spirit. More awards for her gymnastics and amazing academic success.
June RosieD finally showed her true colors and for the 1st time in my life I nearly knocked someone out. Well, that would have been hard, she does weigh more then 200lbs more then me. Tinker's soccer game, 50 people, a screaming match, and a panic attack later, I knew what I didn't want to believe was true. I "had" a close friend, best friend, helping to raise my daughter, that was jealous, that didn't like seeing me be strong and getting over my grief and was determined to keep me down. Haha, little did she know.
July Nationals for gymnastics with Blue, beaming, wonderful, beautiful memories. Blue and I spent a week alone and our bond as mother and daughter became even stronger if that's possible.
August Realized that Tinker was becoming a negative result of divorce and 2 homes and decided now was the time. Court battle here we come
Sept. Blue started a new school, Tinker started 1st grade, I continued with my volunteering helping to strengthen myself and give to those around me.
Oct. HALLOWEEN!!! our favorite holiday. Spent with Blue, Tinker, Aunt. T. and cousins. We are becoming more of a family of 3 and healing.
Nov. 1st court hearing regarding Tinker. nerves, I nearly passed out in the courthouse, Guardian appointed for Tinker.....my attorney asks.."Why are we not going for full custody?" I decided to start a blog. Sharing what I have written in the past...and the present.
Dec. Roo's 5th Bday, many old and new relationships strengthened, xmas....PERFECT..except for the ringworm and the ex-idiot and RosieD.
New Year's Eve....drinking my 3rd martini about to go to a party full of people I don't know...that's a HUGE step, hello social anxiety, no I'm not driving, just wondering about this negative post, missing Tinker, wanting to strangle RosieD for her manipulative ways and not letting ex-idiot talk to me after the Guardian had a talk with both of us about communicating without RosieD.
Tomorrow, Jan. 1, 2009, new year without Roo and new post about all the positives about 2008 and my goals for this year.

F*LUSHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

Growing Up.

2008-12-31T14:32:00.000-08:00

Growing up I did have some normalcy and consistency in my life until I was about 8 yrs old. For about 8yrs I had the all-American family. Dad worked, Mom stayed at home with me and my sisters, I played outside in the snow, rode my bike all over town. We had dinner as a family every night where my sisters had to wait for me to stop talking so they could tell Mom and Dad about their day. We had a black lab named Duchess who was our best friend. My parents breeded her with a yellow lab and she had about 4 sets of puppies. The puppies helped pay for our family vacation down to Florida every year to visit my grandparents, go to Disney, Busch Gardens, Adventure Island, oh, and to leave me down there for the rest of the summer to torture my grandparents instead of my Mother. We also had a beach house on Long Beach Island at the end of every summer and spent countless hours on the beach swimming and playing.
My parents had me involved in EVERY SPORT you could possibly think of. I've done it all. I was even on a canoe team where I participated in 10 mile regattas and did white-water canoeing. My childhood was FULL. I was able to experience and do SO much. Even after the craziness of my parents divorce, I was exposed to different things, so many, that most people don't even experience in one lifetime.
I've been able to provide all of this for Blue Bell and Tinker Tot even more so now since

Roo flew to Heaven. Blue Bell has her gymnastics, Tinker Tot has her gymnastics, soccer, and her horse. We have family dinners, we talk about their day, we swim in the summer, we do arts and crafts, this past summer Blue Bell and I were able to go on vacation, she went to sleep away camp. This summer, hopefully, we will go on vacation to thatstinkingstate and my home state. I've been thinking about my extended family A LOT over the past few days. Especially, since my Mom called me on Sat. right before Blue's gymnastics meet to tell me about my cousins, Uncles, and Aunts. It got me to thinking about the part of my childhood that involved family time spent together at holidays, birthdays, and growing up surrounded by so much love.
I have SO MANY cousins and just as many crazy silly Aunts and Uncles. The holidays and birthdays that I spent with them all together are a HUGE PART of happy memories of my childhood. The silly antics we used to do to each other. Begging and pleading with our Moms to let us have a sleepover after the party. Playing pool, ping pong, and darts in the basement. Even as we all got older, graduated from high school, college, we still always got together for holidays, birthdays, and celebrations.
I cherish that part of my childhood so much. I've tried to provide the same experience for Blue and Tinker as best as I can. Tinker Tot is lucky because her Step-Mommy aka. RosieD has tons of family and she has tons of cousins, Aunts, and Uncles. She has what I had growing up and I feel so blessed for her because I know so many good memories are being made.
Blue, well my heart breaks for my girl. My Mom has 8 granddaughters, 6 on earth, 2 in Heaven, and Blue Bell by far is her FAVORITE LOL. She was there when I gave birth to Blue, the 1st one to hold her, and I think that was the one and only time I ever saw my Mother cry tears of joy. Niee, as we call her, spoils Blue as much as she can. She feels bonded to her and I think she feels alot of guilt too because Blue has no family here in Ohio. My Mom is well ummm, different and unique, and her best way of showing affection is through material things. Blue is old enough to recognize this now, and while she loves being spoiled, I also know she longs for that affectionate Grandma. Just as I long for her to be an affectionate and supportive Mother. But it is what it is, and that is better then NO FAMILY AT ALL.
This year when RosieD's sister became Blue's teacher at school, I questioned God as to why he would provide such a situation. She's also her gymnastics coach and well that's a lot of time spent with Tinker Tot's Aunt, not Blue Bell's , Tinker's . Then, I began helping out at school. There is an hr between when Tinker tot gets out of school and when Blue gets out and I started spending time in Blue Bell's classroom in-between helping Aunt T. with this and that.
Before the holidays, I started coming in during the day at school to keep myself busy and my thoughts off the impending holiday gloominess and pain that Roo boo boo is no longer here. My self-confidence started to come back, Blue was happy to see Mommy HAPPY, I started moving forward and therefore Blue started moving forward also.
I never intended to become friends with Aunt T. Although, I had known her for 4 yrs, we weren't ever close. I thought she was just another person in my life because of Blue. She has children close in age to Blue. She became someone that Blue and I could look up to, rely on, trust, and talk to. We started to love her and her children.
Blue longs for family. She looks at my pictures from when I was little and sees how much family I had/have, how many cousins at my birthday parties, at our family bbq's and what not. I think her desire for so much is exacerbated by the loss of our precious Roo. She calls Tinker Tot's step-sister and oldest half sister her sissies also. She wants to feel included, she wants to feel apart of something.
I didn't choose to move back to Ohio. God chose that for me. When God gave me Roo, He obviously had a plan in mind, and when I think I've got it all figured out some obstacle gets thrown in my way. Now, if you know me, I can deal with obstacles, but when they are affecting my Blue Bell, well it makes me a little crazy.
Bue has been fortunate enough to meet my sister's daughters. I'm not getting into specifics here but I haven't seen my oldest niece since she was 6, I've never met my other 2 nieces. I talk to both my girls about their Aunts, my sisters, I try to give Blue sense of family even though they are far away and my sisters and I are estranged. It's a delicate balance. It's complicated.
RosieD is NOT HAPPY with Blue and I being close with Aunt T. It's all come to head recently. What I don't understand is that if she saw the bond being formed between all of us then why not speak up sooner? Before the bond was there, and Blue got attached to T. She's jealous. I understand her point of view, really I do. But, this isn't a usual situation to begin with. I totally believe that God brought RosieD into our lives and T. for a reason. They are part of the plan he has for ALL OF US.
Blue Bell wants to belong so badly. She wants family so badly. She is looking to help heal that gaping hole left in her soul when Roo went to Heaven. I want to help her, I want to be able to provide that for her as I had when I was younger and as Tinker has now. But I can't. Because Egos and Jealousy is getting in the way. Sins of the devil whispering in your ear and listening to the darker side. We aren't perfect people. But I want Blue to have as much love as she deserves.
Can you tell my thoughts are all over? My heart is broken. Blue Bell's behavior is all OFF again just after having got it BACK ON TRACK. There's nothing like having to worry about your sister and watching her die and then not knowing what's going on with your Mommy and watching her get sick again. She doesn't know what's going on, She knows that RosieD and I aren't seeing eye to eye on things, that nice balance we had, it's GONE. And, how do I fix it now so that my Blue isn't HURT AGAIN? I have no idea.
Life should not be this complicated. It should be easy. Blue Bell in all her shininess and brightness and BIG HUGE HEART deserves acceptance and happiness. But, as the saying goes blood is thicker then water. Right now though, my Blue Bell is jealous of her sister for having so much that she does not, right now she's so angry, right now she's hurting, and all I can do is continue to pray for healing, for guidance, and for God to reveal exactly what HIS PLAN for this particular situation in our lives is.
In the end, no matter where the cards fall, at least the Blue still has her Mommy aka Mumzy aka "Mommy!! you are so ANNOYING!!!" There's nothing me and that kid can't get through together. And hey, at least she's learned one thing over the past few days........in her words, "Mommy, you know how I get all controlling and what not when Tinker wants to play my DS and I tell her you can't do this our that, you can only play this game, you can't go on this part of the game and stuff?" Me, "Yes, Blue and it drives me nuts!" "Well, Mommy, I'm not going to do that anymore cause that's just stupid oh and CONTROLLING!" Me, "oh, yeah, and how did you finally understand that?" "Well, I"m not fighting over stupid stuff with her anymore and telling her what she can and can't do, but, and this is a big BUT, she's still annoying!" "well, OK, then" At least the Blue has learned something LOL.
She's 9 yrs old and more insightful then most adults I know. Compassionate, forgiving, loving, helpful, giving, all the good parts of me. I know I'm doing something right with that girl of mine. And, it can't replace all she doesn't have or has lost. But, at least she's still insightful enough to hold onto all the good stuff. And in the end, the good stuff we have, her and me together, her and me the FAMILY WE ARE, is the most important thing. No matter what, we have each other. Because, blood is thicker then water, and Blue Bell and I will never lose that!

DIG DEEP 2007

2008-12-27T11:27:00.000-08:00

So it's a beautiful day here in Ohio finally! And I spent my day inside trying to push out all the sadness that fills my heart. I can hear other people and what they would be saying to me right now..........She would want you to be happy, she's in a better place, she's no longer suffering. I think of where my life is right now, where's it's been this past year, which only few of you know the true depths I have had to overcome and climb out of. I think to myself I should be OK with Roo being in Heaven, I hear other people say, she talks about it to much, she should just let go, I've had people walk away from me because of my grief, my pain, my ever present sadness.
Really, I want to be happy. There are so many things to be happy about. The sun shining, no clouds in the sky, the warmth of the sun and the air, my 2 precious babies Blue Bell and Tinker Tot, having a beautiful home to live in, having many simple life things that last year I had to fight so hard to get and hold on too. It's true, my life is in a better place but not my heart. I've always believed in the power of forgiveness, forgiving those that chose to take advantage of me and hurt me, but I am filled with anger. I am filled with panic. Panic like I had right after Roo died. What do I do now??? I am trying to hard to build myself a life, I am trying so hard to reach out and meet new people, and well I suck at it. Sorry to all of you who I have broken dates on, who I have promised to call and not called, to those of you that have called me and I haven't called back.
My Dad always used to tell me, F*lush, ya gotta dig deep sometimes, really deep down within your soul, and pull yourself up. Well, I'm trying so very, very HARD. I still believe strongly in the signs that Roo gives me. The little or not so little coincidences. How about this........Yesterday I was at my doc's office to pick up samples of a medicine Roo used to be on. I was talking to the nurse and I was talking about Roo. Yes, I love talking to strangers about Roo, I will only be in their life for a moment and them in mine and I still feel the need to spread the joy and pain of my little girls life, anyways, so this nurse she asks me did you used to live (blank)......and I'm like yeah why?? She used to be one of Roo's first visiting nurses. Now what are the odds of that??? T I'm going on one of Roo's meds and the nurse giving it to me and explaining all the lovely side effects is someone that used to come to my home and take care of my baby. I could see the look of devastation on her face when I told her she had passed. She told me of the everlasting impact that Roo left on her life...........and yet again.........I felt some peace in knowing that my Roo has touched so many.
PANIC!!! Where is she?? She's all around me in just the right ways she should be. She's dancing, laughing, running, jumping, chasing those butterflies in Heaven. My heart hurts, yes more painful then any other experience in my life, and yet I go on. I try to live............I try to will myself to do the basic things in life that need to be done and keep my eye on my focus........providing Blue and Tinker with a wonderful childhood.
So many emotions, so much pain, so much joy, peace and unrest. None of this is fair, but God chose me, and here I am..............sitting at my computer.......the sunlight peeking through the blinds..........a tear streams down my face...........and I hear the words DIG DEEP... DIG DEEP..............time to get Blue Bell and go to gymnastics, sit and talk with the other gym Mom's about this and that.... yes life does go on.....................

F*Lushhhhhhhh

P.S. I promise that I have some recent things to share that I have written...but I feel like my blog wouldn't be complete without sharing all of the past.

I CRY FOR YOU

2008-12-27T11:15:00.000-08:00

I cry for you today sweet Roo.

So, here I sit with tears streaming down my face. I'm tired. Tired of so many things and yet grateful for so many things. I feel so conflicted inside I don't know I just guess it's where I am in my grief. I just sat and watched the video I made for Roo. I watch it everyday and most days it makes me happy but today it made me cry. Yes ,the 18th is coming so I am more emotional. Feelings that I thought I could bury and let go have reared their ugly head in my heart. I don't have hatred, I don't have regret, I have a bit of anger, but that's only because of judgements placed on me by others. Now, I should be the 1st to know that I should not let what others think about me bother me. What bothers me so much and what I try so hard NOT to think about is the perception of what people think happened at the end of your life. I fought so hard for you, my baby, with every ounce of my being and soul. I spent so many hours on the phone with doctors, hours at the specialists, hours doing research, hours holding you while you seized and not being able to do a dayum thing about it, hours laying next to you watching you sleep praying out to GOD please SAVE MY BABY. When I was still in thatstinkinstate I believed that if I moved to Ohio and got better doctors and all the medical equipment I needed to keep you alive that you would LIVE. I believed that I could save you Roo, I believed that with all the love I had for my sweet girl that I could SAVE MY ROO.

It wasn't until the day when I met with her epilepsy neuro and her metabolic neuro and they told me that she had atrophy of her brain, meaning it was shrinking and liquefying and that she only had a year or two to live that the fear in me began. I had fear to let myself really feel love for her knowing that she would be gone. I had fear about what it would be like to watch this horrible disease claim her life. I fought so HARD with every bit of my heart and soul. SHE FOUGHT SO HARD!!!! Even when I had to bring her to the hospital when I promised her I would never do that to her again I did it because I needed my baby not to be in pain and to suffer.

The last 3 months of her life she screamed and screamed and seized and seized and struggled for every breath she took. We watched her heart rate run at 200 and held our breath wondering how long could her little heart stand that till it gave out. Then we would watch it plummet down to 60, 40, 30 and hold our breath and wonder is this it??? Is her little heart going to stop??? Over and Over and Over again for 3 months we watched, we held our breath, we prayed, we cried, what was so hard at the end was that we couldn't hold her in our arms. Her breathing was so bad that she couldn't tolerate us holding her. So I would lay next to her cheek to cheek and hold her little hand and rub it. She would open her eyes and look at us and know we were there she was suffering so bad but she would still give us that beautiful smile.

Today my arms are empty and I would give anything in the world to feel her one more time.
I got my child the best doctors, nurses, equipment, I struggled so hard in making the decision to get her tummy surgery done in fear that by helping her I would lose her. But she was strong she pulled through and I saved her from dying from aspiration pneumonia. I got her vest for her and it helped with her lungs and even in the end when her lungs were so bad we still used it because when she was seizing non stop and screaming the comfort of the vest vibrations would soothe her.

She slipped away more times then I can count and each time we thought THIS IS IT!! they would call me in the room and bam! she would come right back. She fought and hung on day after day. Each day us thinking this is the day and another day passing that she was still here. It was so frustrating to watch her hurt but not wanting to let her go. I finally stopped saying to myself today is the day and just soaked up every minute more that she was with us. I got mad at her.

I'm so sorry Roo I got mad at you, Mommy just didn't understand why you chose to suffer and hang on so long I just couldn't bear it. I finally realized that you had your own plan and that you were going to go HOME in your own way. I made peace with that and said OK baby you and God know when your time is and I will stay by your side and I will sing you your song to help you stop crying, I will hold your head so you can fall asleep, I will hold your arm to keep it from moving so you can rest sweet baby.

It hurts so bad to know that I knew, your Daddy knew, your nurses knew, everyone around you knew that you were going to die and some people think that mommy wanted that for you! It hurts Roo it hurts! I sit here and cry and my heart breaks and I'm mad at myself for letting myself feel hurt by this. Roo, you know how hard mommy fought for your life. To give you the best life! But God's plan was for you to be here only a short time. Today is one of the days I don't understand it. I don't want to question God and say why?? why my baby??? why me?? why my daughters?? why do we all have to have this pain and why did you have to have that horrible disease???

I don't want to question why! I want everybody to see that from the day you were born that I fought for you to live. Even when we were in thatstinkingstate and they didn't want to give you your feeding tube because the doctors said you were terminal I wouldn't accept that! I fought and begged and pleaded for that tube! And, in the end that's what people think I did to make you leave. Roo how can they not understand???????? I don't get it! Losing you, your journey here on earth is the hardest most painful experience of my life. I'm sitting her just crying I tell myself all that matters is that I know that I DID EVERYTHING I COULD! I know the only thing that matters is that you know that Mommy tried her best to give you the most and to save you. I know with every sign you show me your telling me it's OK. Some days I just can't stand this pain. I can't stand feeling selfish that I want you back here in my arms, I can't stand feeling guilty for wanting you back when you suffered so much at the end. I can't stand that I couldn't protect you and things were made so much worse.

It shouldn't matter to me what people think because I know the truth. I know what's in my heart I'm the one that was there. No one can know what this pain is like only other mothers that have lost their children. especially those mothers that have lost their children to this ugly disease.

Roo, I know you wouldn't want me to feel so sad to be sitting here crying my eyes and heart out. I know you don't want that for Mommy. I know you want Mommy to have peace and feel joy again and I try for you, Roo, I do. But, then I have my days like today where the tears just keep flowing and my heart is just in pieces and I wish that people could just see that you fought so hard to stay with us, you really really did, but God needed you back with him. All Mommy could do was make you as comfortable as I could on your journey back to God and to heaven.

I didn't know until about a month after you died that day there was no day nurse. I knew you were going to leave when you were alone, which was pretty hard to do being that you were never alone ever at the end. I know you must have walked right into heaven after the night nurse left. When you knew no one else would be coming and that me , Daddy, and sissy were still sleeping. You lil schooch! I knew that you were going to go on your own time. I think you knew Mommy wouldn't be able to stand the memory of your last breath. I can't stand the memory in my head of waking up and looking up at Daddy checking for your heart beat with the stethoscope already knowing that you were GONE.

Nobody has to live with that memory that image in their head. If only they knew Roo, how then could they say that I wanted that for you???? I try so hard to remember the good times and slowly but surely I can............but the memory that haunts me the most is the day I woke up and you were gone. The way you looked..........I can't stand that image in my mind and nobody has to live with that but me and Daddy.

Daddy gave you your last bath that day. Mommy just couldn't do it and I knew it was important for Daddy to have that special time with you. It felt like forever, he was washing you and giving you your last bath. I could hear him crying through the bathroom. Then, in the bedroom it felt like it took him forever to get you dressed. In your orange pooh bear, outfit Mommy's favorite. Daddy made you look so beautiful. You smelled so pretty with your special lotion. Mommy still wears it everyday so i have a little bit of you with me. I held you and held you knowing that soon I had to call the funeral home. I just couldn't bear to have them come and take you from me. I wrapped you in your pooh bear blanket and took a deep breath and I remember carrying you downstairs and placing you on the stretcher you looked so small on that big stretcher. kissing your cheek telling you I would see you again in a day for the last time. After that, I don't really remember anything. I placed you on that stretcher and for the weeks and months following my mind, heart, and soul went with you. I hurt so bad, I hurt the people around me, I couldn't stand living without you, I didn't want to live anymore. But you and God kept telling me I had to. I had to, your sisters needed me.

So, mommy reached out and got help and since then I have been better. I have learned how to grieve you and miss you in a better way. Without hurting myself or hurting those around me. When my tears fall I'm by myself. I keep this all inside. Those around me know I'm hurting but they cannot understand and most times I don't let them see it. Today here I am, typing it all out, putting it out there.

I shouldn't care about those who judge me. For there is only one judgement that counts and that is Gods. I would never do anything that would compromise me getting into heaven because i have known and always knew that is where I will be reunited with my baby. I will get to see her whole and perfect and there is nothing I will or could do to keep that from happening. so now I live each day to make all of my girls proud. It is so hard some days and yes the days with peace come a little more with time. But, I will always have these days when I cry for my sweet Roo. My sweet love. when I yearn for her smell, to hold her, to see her smile, hear her laugh, brush her hair, hear her cry because she's by herself and wants company, see her try so hard to play, see her try so hard to live.

Roo please help mommy today. I don't want to cry all day. but I'm crying for you!!! I miss you soooooo much!!! No one will ever know, I just feel like no matter what I do no one will ever understand and it bothers Mommy so much that people think these things that are sooooo wrong!

I cry for you today my sweet Roo. Mommy promises that I will try to be happy, to make each day good, and I know that on these days that God and you will give me the strength to withstand the pain, to walk through it to be able to overcome some of it. I cry for you today sweet Roo. I sit here and I cry..............no one will ever know or understand this pain. All mommy can do is know I did my best and continue everyday to do my best and make you proud of me and be a good person. I love you so much Roo! I imagine you chasing those butterflies and being with all the other angel babies that have gone to heaven whom mommy loves so much. I can hear you, saying to my heart, mommy don't cry because where you are you are free from pain and happy.

I cry for you today sweet Roo. You and God know what my prayers are and sometimes they aren't quick to be answered but I know that you will answer these prayers of mine. Till we are able to hold each other again sweet girl.....

F*Lushhhhhhhhhhhhhhhhh

More Tests. We are closer....and an update in 2008

2008-12-27T11:01:00.001-08:00

Friday, January 7, 2005
Wow what a busy week!!!!!!!!!! Monday night we went and had Roo's sleep study done. Poor baby was hooked up to so many things but she slept great through the night and the room was awesome like a hotel room!!!! All the techs were very nice. The next day she had her skin biopsy. My Roo is so strong and brave she didn't cry one bit. By Monday, we should have some of the results and in 8 weeks the rest. Tuesday afternoon we had her visual evoked potential we got the results back from that and her brain is receiving messages from her eyes which is really good news wooooohooooooooo!!!!!!!!!!! Wednesday was supposed to be the easiest day HA! LOL We met with 2 seizure neurologists who diagnosed her with Class A and B epilepsy. They did a blood test to check the levels of her medication. Never knew that needed to be done! Stupid thatstate docs! Then we met with Dr. P. I love this doctor so much he explains things very well and spends a lot of time with us. He answered alot of the questions I had. He answered that one stinking question I always hate with grace and in a way where I didn't walk away feeling like I was still so lost. I feel we are on a path to understanding things. He is testing her for Krabbe's because he said that she has a lot of the symptoms but doesn't fit in the category of that disease exactly. When I asked him what that meant he said that Roo is actually progressing faster then that disease. Pretty scary stuff to hear. I know it is THAT BAD.........still hard to hear nonetheless. So, where are we now? We are testing her for storage diseases with specific interest in Krabbe's. I would love to have an answer, as devastating as it would be for me to hear it was Krabbe's, at least it would have a name. Then, we went to the lab for blood work. They poked her 4xs and couldn't get anything so we went off to another lab and they got just enough for the Krabbes test. So after 8 hrs of doctors and blood draws we were beat. Thurs. she had her MRI and anaesthesia. She did great as always!!!!!!!!! Then we went to the opthamologist. That was the hardest and last appt for me anyways. Sitting in the waiting room with other kids Roo's age was just too much for me to bear. And, after not having a good cry for 3 months the tears just started to flow. The nurses there were nice enough to put us in another waiting room. It was the first time that I was around other kids Roo's age. I seem to have avoided all that pretty well for a year lol. More of a reality check then I needed. So, onto the appt., the opthamologist said that Roo does have a mild form of optic nerve hypoplasia and that her optic nerve is pale. That it has suffered some damage from whatever it is that is slowly taking my girl. At least we know that she can see though....she does have some visual impairment but she can see and that's all that's important to me. He said the same thing as the metabolic doctor which was that either that's all the damage that she will have or it will get worse. I took Roo to the opthamolgist back in November in thatstinkingstate and she had said that her optic nerve was of normal size and normal color. So, who's to say if that doctor sucked like all the rest in thatstinkingstate or if the damage has just been done recently. All in all, it was a hard emotional week but I love the Cleveland Clinic I love the doctors, the nurses ,the techs, everything about it. It is so nice to get all her care in one spot, for all the doctors to be communicating together. It is just so much better for Roo and for me as her mom. We have a few more tests to do and then we go back home and its Moving time!!!!!!!!! AMEN!!!!!!!!!! I have been thanking God everyday for my little Roo. I have looked back over this past year and seen how Roo has worked miracles in my life and my other girls lives. It really is amazing the things in life that have gotten better because of her. Most importantly, she's bringing us home to Ohio where we will be surrounded by so much love and support!!!!!!!! I thank God each and everyday for my friends, my sisters, my mom, my dad, and everyone else who has reached out through prayer or otherwise to me and Princess Roo. The power of prayer is a miraculous thing!!

F*Lush

How did I survive all of that? Reading all those words seems like a lifetime away. I'm sitting here freaking out about Ringworm and Tinker Tot's draining, oozing, ear.......wondering why I'm freaking out so badly. I know if Blue Bell gets ringworm she'll be out of her gymnastics for a few weeks and that would be a VERY BAD THING. If I get it, oh gosh, who knows what will happen. Seeing Tinker so sick these past 4 days has broken my heart. Even more so, because my germaphobic, OCD, freaking out self, couldn't bear to cuddle her or hug her or get without one foot without almost having an anxiety attack. Maybe I have a touch of PTSD like Blue does. It might explain the anxiety, the absolute hate over feeling not in control, and not being able to wave my wand and make Tinker Tot all better. Her Dad came and picked her up early. I'm supposed to be at a party with Blue Bell right now. My dearest just went and dropped her off. And what am I doing now? Drinking and apple martini at 3:30 in the afternoon. That makes total sense right??? Because, after working myself up in a dither over ringworm, my anger at the ex-idiot for not having taken care of it sooner, (the step-sister has had is since Sept.!), him not realizing that um ya duh your 2 cats and horse need to be treated....I'm a little effed up. Seriously, I don't have ANY issues. eh. Oh ya, and I'm in a custody battle with the ex-idiot which is more about money then the actual custody issues. So, I can see the new wife twisting this all around that I sent Tinker home early because I can't handle her being sick. ^^^See above...I think I can more then handle her being sick......even if I'm running after her with a can of Lysol spraying everything she touches........gulp...gulp....one more tini and then...

F*LUSHHHHHHHHHHHh

2004

2008-12-27T11:00:00.001-08:00

Thursday, December 30, 2004
Happy New Year Everyone!!!!! Roo and I leave for Ohio on Sunday. We are going to be very very busy. The doctors up in Cleveland have lots of tests planned for her. On Monday, the 3rd, she will have an overnight EEG, Tues., She has another biopsy, and then in the afternoon we meet with an epilepsy doctor. Weds., They have 2 MRIs scheduled for her. Weds. afternoon we meet with Dr. C, Thursday, she sees the opthamologist and has an evoked potential test. I received the report from the neurologist from the Cleveland Clinic earlier this week. It was very thorough, he got all the info, and history right! He wants to test Roo for Krabbes disease and other Storage diseases. They did so many blood tests on her that haven't been done before. There wasn't enough blood to do the peroxisomal panel or the co enzyme Q tests. So, they will redraw some blood when we are up there this week. The doctors impression was........Severe, progressive encephalopathy, manifested by microcephaly, global delays, failure to thrive, severe hypotonia, mixed refractory epilepsy, and possible neuropathy. Of course, this was all stuff I already knew, but seeing it in black and white is always another punch to the stomach. Roo has been doing OK this week. She seems to have alot of days where she is very alert, alot where she only smiles a little bit ,and seems to be in her own world lately. Her seizures have come back full force. I believe she is having about 50-60 a week. Her breathing is good *knock on wood*. Please pray that we get through next week with no bumps in the road and pray for an answer for us. I really feel good with these new doctors. They said there is a 70% chance we will get a diagnosis. Hope everyone is blessed in this new year to come.

Those are hard words to read...still....but she is at peace.

F*Lush

p.s. I still wish she was here in my arms everyday.

Mind.Is.Gone

2008-12-27T10:59:00.001-08:00

Thursday, February 24, 2005
Well,l I think I have officially lost my mind. We went to the hospital today and had Roo's stomach emptying test done. Then we met with the seizure neuro and metabolic neuro. We talked with them both for 2hrs. It was probably the hardest doctors appt for Roo EVER. 1st, her seizures are out of control so we are going to try Topomax and see how that works. We are going to d/c the neurotin and keep the trileptal the same. We have another video EEG scheduled for the end of March but the Doctor wants to get her in asap. OK so here goes....I ask why her seizures seem to be increasing and are getting longer. I finally got the results of her MRI that was done last month and it wasn't good. She has cerebral atrophy not just in one part of her brain but, ALL, yes, ALL of her brain. It is small and shrinking and to quote the doc......."globally demylenating." Lovely........how is it that I know that she is so sick and all of this is so bad but when I hear the doc finally say the words it feels like 10,000 18 wheeler trucks flattened me that many times. Blah Blah. So there was more discussion about her brain and how the brain works and how hers isn't working. I can't remember specific details cause its 3:30 am and I CAN'T SLEEP. So, the nicest sweetest doctor, the metabolic doctor, comes in and talks with us. He wanted to know where I stood on what measures that should be taken for Roo. I told him that I wanted her DNR, I never want a trach for her, and that my main and only concern is making her comfortable. The doctor told me he was very proud of me because he could tell that I have put much thought into all my decisions and told me I was strong. HA HA! got him fooled too. We discussed once again not being able to find a diagnosis for Roo and maybe doing an autopsy I told him I have to think about that one. We talked about how Roo is having more and more days of not being there and he told me yet again that the disease is progressing. I asked him how fast and he said pretty quickly.....giving us a window of less then 1yr to 2yr at the most. But miracles always happen right! I'm just so afraid of losing my Roo. Poor Roo. She can't do much now and if she progresses to the point that she doesn't smile, , laugh or anything what is left really......I am such a mess I am having such a bad, bad, bad day. The hurt inside is more pain then I have ever felt in my life. I used to be able to just give her 2 meds put her to bed and that was it. Her bedtime routine since she got pneumonia is crazy. I draw up all the meds, neurotin, which we are going to slowly wean her off of, trileptal, pepcid, dissolve the roblin in a syringe , tylenol cause the poor buglette is teething something fierce. Then, it's giving her all the meds through her mickey button, then suction the nose, suction the mouth, give breathing treatment, then chest pt and half the time she actually sounds OK for maybe 20 min. Usually, you can hear her breathing clear across the house. Everything is just too much right now. I am so afraid of going to bed because everyday just gets worse and worse. I say, "OK, I'll take it all one thing at a time." I get over one obstacle then there's another and another and another. Yes , I know that's life, but I need a little break. I think my ex and his wife are upset with me because I didn't have Tinker Tot over today but I just couldn't. I had to go to the hospital for Roo, see Blue Bel,l and I'm just worn out.

So many emotions I can't even type them all. All I can say, is that I am just a total complete mess but I'm doing everything I can for these 2 special girls of mine. I love them both so much and they love each other both so much.................Why does there have to be so much pain???????? I am angry today. Angry like I never have been before. I can't kiss my girls boo's boo's and make them all better. It's killing me inside ripping my heart in 2. I have to re find that positive part of myself. I am most definitely doom and gloom. I am going to look into setting up Roo's funeral arraignments. It sounds morbid and even if she doesn't go until 4 yrs from now, I still want to have it all figured out because I don't wanna do it when I'm a total wreck. HOPE I STILL BELIEVE.

F*LUSHHHHHHHHHHHHHH

Didn't you know????

2008-12-27T06:06:00.000-08:00

I'm a bit of a control freak. Now I was this way before Roo was born and afterwards even more so. Since I couldn't control what was going on with my baby I felt the only thing I could control was my surroundings. Oh, and important things like my hair LOL. Then it got bad for awhile and I tried to control the people around me. Bah! We all know that's a waste of time LOL. Every time we drove to an appt. for Roo, which was always 2 billion miles away, I would drive Roo's Dad insane. Until we realized it was much better for me to be the one driving. There were more then a few times in a parking garage at some hospital he wanted to kill me as I screamed there's a parking spot over there, turn, turn, turn, f it who cares if the van is crooked, LET'S GO!!!!!!! That man had the patience of a saint during that time in our lives. Granted he was far from perfect himself......but I was a control freak.
For the past 2 yrs I have tried to maintain control over my feelings, surroundings, situations, and have made EXTREMELY calculated decisions. Somewhere along the line, recently, I threw all caution to the wind. Thinking to myself, "This will be GREAT!" "This will be GRAND", ya know all the stuff you tell yourself when you decide to leap off that cliff with no regard to what actually may happen. Not such a great decision for a self proclaimed control freak. LOL.
Now my head is spinning, my heart is whothehellknows, and my stomach is in my throat. What am I doing??? That's what I keep asking myself. And it's that question over and over again in my head that's driving me crazy because I don't have an answer and can't seem to control things so carefully because of throwing that caution to the wind. I don't like it when life gets messy. Seriously, who does??? But my life, well it's been really messy, and seriously, DUDE, I need a break. And I've been using "Dude" in too much conversation but it makes me chuckle every time I do. LOL. Is it too much to ask for things to not be so gosh darn complicated???? Part of me wants to run back into the safeness of my fortress, part of me wants to forge on and keep going, part of me just wishes I had a crystal ball.
I know one thing for sure. I can't do chaos. I'm incapable of it, it will break me, and darnit I've worked to hard to piece me back together. I'm a planner, I have to have plan A-Z, like actual plans that will work in reality. I've always been inpatient but I didn't realize until recently how much Roo's life impacted how much I will and will not tolerate in my life. Ya, I'm jaded, I know exactly what I want and I go after it. I don't hem and haw, I'm straightforward to the point so much as I'm in your face. I'm fiercely independent and opinionated. Oh ya, and inpatient, because I don't want to surround myself with negativity or people who live their lives in disarray. Life is too short.......so I took a tangent in my life and now here I am.....facing myself in the mirror, control freak, judgemental, inpatient, angry, it's hard to see all this within myself........now, NOW though........how do I change???? Didn't you know it all starts with Plan A? Cause yes, yes I am, a CONTROL FREAK.

F*LUSHHHHHHHHHHHHHH

2008-12-26T18:29:00.000-08:00

I'm so ANGRY right now. Not because Christmas was horrible. Not because my Aunt that i haven't spoken to in years called me. Not because My sister, who I haven't spoken to since Roo's funeral called me. Nope, none of those things. It's because I'm Tired. T.I.R.E.D. After 3 yrs, one would think that those around me would understand, that the holidays require so much effort and energy on my end, and not take that for themselves. Seriously, who does that??? Oh wait, I can name a few.

I want to bury myself, I want to sleep forever, I want to tell my sister off for wasting 2hrs of my time yesterday complaining about her most recent boyfriend that broke up with her. I want to scream at my Mother for being manipulated by my older sister.

Want to know what set me off, initially? Tinker has ringworm, which she caught from her step-sister, that has had it for 2 months. That my ex-idiot wasn't going to tell me about but decided it might be a good idea after he heard our daughter tell me over the phone and the tone of my pre-freak out voice. I've had MRSA, Mito, anemia, mono, strep that almost killed me, fill in the blank...I've never heard of that blah blah. Yep, that's me. So ya, I freaked. And then freaked some more when Tinker Tot's ear tube started draining and the ringworm multiplied on her body, even though I started treating it just as the ped instructed, ya I FREAKED.

I FREAKED, in my usual way though, on the inside and not the outside. No one around me could tell I was silently praying to God and Roo that this ringworm wasn't real, that I wouldn't get it, that it wouldn't multiply on Tinker. Ever time Tinker is with me, we cuddle, we sleep together and we love on each other. And, I was so looking forward to that because, she's the most loving little 6 yr old ever. She can tell when I' m about to cry before anyone else. She woke up a booger this morning all over her face and hair, draining ear, more ringworm, and my heart just broke. Ya, I'm a wimp. I was never this way before....but now I am.

I want to hide, I want to hope and pray that I don't get it and don't end up sick or with my MRSA or Mito aggravated. And I wish and I hope, that this X-mas I could have held my Tinker Tot close to me and cuddly boopered with her, kisses, and huggies, without being a paranoid freak.

Really, it was a good X-Mas. But, I'm tired of life just giving us that one little thing that just throws me over the edge and makes me want to drink an appletini to write this blubbering crap so I can............

F*LUSHHHHHHHHHHHHHHH

Tween

2008-12-21T12:53:00.001-08:00

Tween........
I drive so much nowadays with the girls in 2 different schools. Blue Bell's school an hr round trip and Tinker Tot's another 15 away from where I live. Then there's those 4xs a week I'm about 40 more miles away at the gym with Blue. So, in all this driving it gives me tons of time to think. Last night, as I was driving Blue home from gym I thought about my past 9yrs with her. Just her and me. I was a single parent when Blue was born, young, working hard to get by and establish a nice life for her and me. This is going to sound strange but I had tons of support but at the same time I was all alone. In the 9 1/2yrs that I have been her Mother or since becoming a Mother there have been so many bright spots and many lows. Blue Bell is an amazing young girl in every way. And in every way she is my clone, my mini-me, right down to the way she talks, the way she loves, her passion, her competitiveness, always striving to accomplish and be the best she can be. But, she's also stubborn, moody, did I mention stubborn, bossy, nosey, and has ADHD, and post traumatic stress disorder.
It wasn't until Tinker Tot was born that I truly realized how challenging my Blue can be. I mean of course there were the terrible 2's when I can remember sitting in my Mother's living room crying my eyeballs out saying that I would never make it. The frustration, the exhaustion, the level of dislike I had for her that evening still lingers in my mind and haunts me. Here we are 7yrs later and it's like she's 2 all over again some days. I have an oober amount of patience for my Blue Bell. My heart breaks for her in so many ways and I give her as much as I can emotionally and otherwise.
Let me backtrack for a second and give you all some background info.....maybe this blog will make a little more sense. In my life things have not lasted very long. My parents divorced when I was Blue Bell's age. We moved so much I never was in one school or state longer then 3 yrs. My family members and I since the divorce all go through periods of time where we don't speak for years, then talk for a few, then don't speak again. So needless to say the one constant in my life for the last 9yrs has been Blue Bell. Friends have come and gone, Relationships have come and gone, family has come and gone. But in 9yrs, ALL 9yrs, there has been Blue. It is sad and wonderful all at the same time. She is the longest relationship and constant I have had in my whole life.
Realizing that last night was strange for me. Thinking about our 9yrs together the ups and downs, the triumphs and struggles, the tears and joy. Lately, her and I have been butting heads BIG TIME. It hurts so bad. I hate when we are angry at each other, I hate when I have to rein her in with boundaries and punishment. It is so HARD. But this weekend, well the S*t hit the fan. It was an awful battle of the wills between her and I on Saturday and I spent most of my day hating every minute of my life. ALL. OF. IT.
I guess as Mothers we all feel that way now and then. It was a day I thought neither one of us would survive but we did. Tinker Tot cried, she was scared, she's never seen me so angry. She's never seen her sister so angry. We all hung in there, Blue staking out her side of the battle, me staking out mine. I was not going to give into her relentless teen ways and tried everything I knew to do. Tinker Tot isn't permanently scared for life. Actually, I think it was a learning experience for her. She doesn't want to make Mommy that mad E.V.E.R. But Tinker is the complete opposite of Louie........I'll have to write a blog of her own one day soon.
I was racking my brain on Sat. night to think where oh where did things go wrong that day? Why did my Blue Bell have such a meltdown? Why must she test and push to see how far she can go and every button there is? There was no clear cut answer. Usually, I could think well this happened or I know she saw something that reminded her of Roo, or some reason or excuse for the complete and total fit of rage and anger. But this weekend, there was no excuse other then she's 9yrs old and I swear she has PMS already LOL.
I felt on Sat. what I felt those 7yrs ago in my Mother's living room. How am I going to do this? How am I going to survive her tween and teenage years? I'm older now, wiser sure, but physically not up for a battle of the wills with her. I feel like sometimes we are in the terrible 2's all over again. I guess what I need is a break. A serious 24-48hrs of no kids, just some time for me. And just like when she was 2 I have support but I feel all alone too.
I see other Moms I know that are able to just dump off their kids on the 1st person that they can find to watch them and go out and have fun or stay home and relax. For me, I've never been able to do that. I feel so much guilt for asking someone to take her. People have offered, I guess it all goes back to me not being the greatest at asking for help.
I love Blue Bell with all my heart and soul. Because she is so much like me, so strong, so loving, so insightful, brave, intelligent, beautiful. She captures peoples hearts and so many love her. She is top of her class at school. She is rocking it in gymnastics. She is growing and thriving but MAN the growing pains are tough.
We will survive just like we always have and do. I'm sure I will continue to tell her that I'm taking her receipt and returning her cause she's broken and she'll laugh and smile at me. I'll tell her I'm putting her up on Ebay. She'll roll her eyes. I'll tell her get that homework done. She'll so lovingly screech "I AM!!!!!!!"
That's my Blue Bell. My dynamic, complicated, moody, and sometimes angry kid. Full of energy, Full of love, Full of lots of tween hormones.
My Blue. My tween monster. My heart, joy, and laughter. I can only think that God gave me Blue Bell to keep me on my toes, to keep me going in the dark moments of grief, to remind me of everything good.
It's been quite a ride in Motherhood with her. I look forward to our next 9 1/2 yrs and beyond. I'm excited to see how she grows and who she becomes.
In the meantime, I'm sure there will be days when I'm ransacking my house looking for that receipt.

5

2008-12-21T10:09:00.000-08:00

Tomorrow she'll be 5. What can I possibly say to mark this day? I can remember her birth, her life, her smile, her love. I feel the heartache and the pain. I feel the motions of life pushing me forward whether I want to go forward or not. Blue Bell said it out loud last night, "I miss Roo." I almost fell over but I was driving LOL. She said she tries to imagine her "normal" walking, 5, talking, with legs. Her words. She said when she imagines her that way all she can see is her head, smile, and legs. I told her, "Blue Bell, we are T-girls...we are nothing but small heads, no bodies, and long legs....that's exactly how she would be!" Blue Bell laughed and let out a sigh. When we got home, she hugged me, like REALLY hugged me and we swayed back and forth hugging each other in the kitchen for awhile. The swaying is a habit we both got from Roo. She loved to be held that way. Living without one of your children here on earth it sucks.....BADLY. Living in the moment, for my other 2 that are here, is WONDERFUL. I think I've found a nice balance between the two and a really healthy support system to help hold us up when we need it. In AA, they say take it one day at a time. Same is true for grief. Sometimes it's an hour at a time, sometimes it's a minute, sometimes it's a second. Right now, I'm trying to suspend time......like it's not moving forward. I want it to stop and not be that one more birthday has passed without her. Tomorrow, the girls have gym. I'll be going out into the world and sending all my love and energy into children that don't get it at home. I'll be celebrating the little moments when those children "get it." I'll be thanking God for Blue's gym coach, who has called me everyday to check on us, and listen to me. I'll be thanking God for Tinker Tot's Aunt, who is going to go out to dinner with me and her while Blue Bell is at gym practice. I'll be thanking God for my Moms who I can call and talk to and they listen more then they talk the past few weeks. I'll be Thanking God for old friends, new friends, old friends that are new again. I'll be Thankful mostly for the gift of being Roo's Mom. I'll be thankful she is healed and still all around us with her spirit. I'll be thankful that God trusted me enough to be her Mommy. I'll be thankful for the other Angel Mom's that "get it." and send me sweet love and hugs everyday. Well, I guess I wrote out what 5 means to us this year. Thankful. Grateful. Love. Strength. Appreciation. New. Old. Moving forward, but NEVER forgetting. To the moon and back my sweet scooby-doo! Do you know Tinker Tot does the munch munch on my cheek?? Course you do! I don't know how she remembers that but she does......and it drives me just as crazy when you used to do it to me!! Munchies....smooches.......woogees.......I miss you Roo...xoxo Mama.

OW.

2008-12-20T20:40:00.000-08:00

Head hurts. Heart hurts. Eyes hurt. Feet hurt. Ok, everything HURTS. No Blue Bell tonight, she's having a grand ole time at her cousins. No Tinker Tot tonight, she's having a grand ole time at her Dad's. No Roo, for too many months now. Me, I'm off to bed....

F*LUSHHHHHHHHHHHHh

Proceed with Caution....or just ignore me...

2008-12-14T17:32:00.000-08:00

Pomgengratetini tonight.......I don't know why I decided to finally start a blog around Roo's 5th birthday with my emotions swirling all around me. I'm starting to feel like a whining blogger type. Oh well. Tonight my anger consumes me. Blue Bell, Tinker Tot, and I put up the Xmas tree. I used to love it. 3 yrs now I hate it. I hate that my Roo is a decoration on my tree rather then being here. I hate the Memory ornaments given to me, the ornaments that hold her picture, the ornaments that she(her pt) made with her teeny tiny little hand prints. I hate them but they also bring me so much peace.

I'm so angry and I don't like it. I hate not knowing what to do with my feelings of missing my sweet Roo. This weekend, Blue, Tinker, and I had a great time filled with laughter and laugh. It's been 3 holiday seasons and I can finally say I'm able to stop in the moments filled with love and laughter and soak them in. Not just pretend. Tinker Tot made arts and crafts out the kazoo this weekend like usual. Rainbows, butterflies, pictures of her horse, written songs, and stories she created with her own imagination. I love watching her draw and write her imagination at work.

Blue Bell loved playing with Tinker this weekend, loving each other up, driving each other crazy, helping me decorate the tree, being angry, happy, smiling, and laughing. I feel so sorry for those around me that are close to me. This is the time of year that takes the most patience. I try to withdraw into myself and concentrate all my energy on Blue and Tinker, but some friends still demand my attention. I warn them. I do. I tell them, My moods are going to be up and down, we can be laughing one moment and the next I'll be screaming in pain. Even though I warn them, they act shocked when it happens. I mean it's not like I'm acting insane just because, it's not like I'm acting angry just because, it's not like I'm taking things out on them because I'm there. Telling them I'm going to be emotional roller coaster and to proceed with caution is nice I think anyways. If they don't want to heed the warning, then don't be m-f shocked when the hammer comes down and I want you out of my house and to go home and leave me ALONE!!! Seriously, When I say I'm isolating for the benefit of others I'm not effing kidding. I guess there are always THOSE people though that think, well I'm different, I can get her to get over it, I can get her to change, I can take that hurt away.......YA OK, Jesus walked on water, but DUDE, HE WAS JESUS!!!

So, I miss Roo. It's been almost 3 yrs....ya ya yadda yadda, it's gotten easier with time. Grief comes in waves, blah blah. Just seriously, it sucks some major a** when her Bday and Xmas are 7 days apart. When I already had issues with the holidays because of my parents. In 2 weeks, I should be back on my feet, my smiley ole self. My friends that are smart, either A. Avoid me at this time, B. avoid me at this time unless I call them, show up at their house, IM, email, whatever, C. reach out to me but know they must listen to my nonsense and rambling and occasional walk down memory lane regarding Roo without saying a word, or D. walk into my space and MY TIME expecting me to be normal, expecting me to give them attention on their lives, expect me not to be an angry moody mess, and then when I realize THEY were expecting me to be ahem "NORMAL", blow the eff up and basically tell them to suck it. Those right now are the options.

One friend decided to walk into the mine field tonight and boy oh boy did that backfire. Shoot, any Sunday night when I have to send Tinker Tot back to her Dad's house is reason for me to NOT BE HAPPY. Blue Bell and I are comfortable enough to understand our hurt and anger on those Sundays. We hang out, talk, cuddle, or avoid each other. She goes to her room, I go to mine. It's an understanding. But someone from the outside, where I have tried to explain this and has witnessed it 1st hand now 2xs and still pushes to be apart of that effing mess......c'mon....give us our space.

I sound like a bitter B*tch. Really, I'm not. I'm hurting, Today is the exDH birthday, yesterday was my2nd Mom's bday, tomorrow is my Mom's bday, Weds. is Roo's Bday, Thurs is her 35 mo angel anniversary, I'm dealing with a teenager, a custody battle, more family drama then I need, oh ya and xmas is right around the corner.

Bitter not really, Angry OH YEAH, wanting to drink more of my martini to make it all hurt a little less........right on that........

F*LUSHHHHHHHHHHHHHHHH

Train

2008-12-12T19:24:00.000-08:00

Blue Rasberrytini tonight...........Blue Bell and Tinker Tot are fast asleep upstairs curled up in each other. After an evening of our favorite activity and playing with the new X-mas train Grandpa sent them. My Dad hasn't seen Blue Bell since she was 2 yrs old and has never met Tinker Tot. Yet, he sends the most splendid gifts for xmas. He brings magic into our home and lives several states away. He brings the magic of X-mas back to me each year since Roo has left us just as he did when I was younger. When I was younger, he always set up his train from his youth around our xmas tree. I would play with it for hours upon hours. I would get lost in making up stories about the train and the little village it circled around. It would help me to drown out the fights between him and my Mother. The awful screaming would disappear as I would disappear into the x-mas village and as I made the train go full throttle round and round so I could not hear the yelling.

I'm sure he has no clue that is why I loved the train so much. He remembers looking at me smiling as I played with it and kept busy for hours. He doesn't know the reason why my 10 yr old little self got so absorbed in it. I won't tell him either. The train made me VERY happy. What brings me more joy now though is watching Blue Bell and Tinker Tot play with their new train. Knowing, that they aren't playing with it to escape any yelling, fighting, or screaming. Knowing, that although their innocence of childhood has a big scar on it, they are playing to have fun. I know that as I watch them and play with them they aren't thinking about Roo's upcoming Birthday, they aren't thinking about what horrible thing is going to happen next, they are enjoying the sound of the train going round and round, the xmas music, the whistle on the train, because it's part of the magic of X-mas.

My X-mas train when I was 10 yrs old saved me.........I got lost in a world to avoid the ugliness around me. As an adult, I get lost in watching my girls laugh and play. Watching my girls play with innocence and not to escape. I remember too many things that brought me happiness but in order to escape pain and reality. Wow, I guess that's why I was able to find comforting things to do when Roo was here and dying. ***Light bulb moment***

Gosh, Blue Bell is such a trial right now. She's throwing a fit again. They were sleeping so sweetly, curled up together, until Tinker Tot moved out of her Blue Bell's arms and she awakened. She awakened and realized that Tinker Tot was in her arms and not Roo...and she's angry.......Me too Blue...Me too......

The blue rastini must wait........I'm off to cuddle both Blue Bell and Tinker Tot off to dream land.....hoping that they feel their Mother's love around them. Hoping we all feel a piece of Roo with us as we fall asleep.

F*LUSHHHHHHHHHHHHHHH

I'm alone

2008-12-11T17:26:00.000-08:00

I'm drinking. My dearest just left to pick up Blue Bell from her Aunt's. Tinker Tot's Dad picked her up an hr ago. I'm alone. I'm drinking. I didn't drink the 1st year after Roo was gone. I went through all the 1sts sober. Then, I started making friends with my neighbors. SAHMs who drank during the summer. The summer became the fall and yet I still drank. Blue Bell got angry and then more angry. After she went to bed, I would sit down at the computer, read blogs and have a drink. It took the edge off and I slept better.

This is the 3rd holiday season without Roo. I'm still drinking except now I've moved on from beer and wine coolers to martinis. It doesn't really make a difference. I still want to cry, I still hurt, and I'm still angry. When Blue Bell is raging, She was dx ADHD and ODD before Roo was even born.

My dearest just called and he got mixed up where he was supposed to pick Blue Bell up. My friend just called asking where my dearest was. Now, I'm frazzled. When Roo was here, I had so many different ways I used to comfort her, myself, Blue Bell, and Tinker Tot. I haven't been able to find any to comfort myself since. Well, except for drinking. Blue Bell has lots of activities she loves and that keep her and myself busy. Tinker Tot also has gotten involved in lots of activities with me and her Dad. But, I haven't done anything as a hobby or to comfort myself. Which right now is my biggest mistake.

My energy has been going FULL THROTTLE into Blue and Tinker. As it should. I wonder though.....When Roo was here, and her time was so limited, how do I find the time to do the things for myself that I found comfort in? Because her nurses and hospice basically forced me too. Now there is no one here, telling me to take a time out. My dearest, bless his heart, never knew Roo, or what life was like day in and out parenting all 3 of my blessings.

Right now, I realize that things are off balance. Blue Bell is off balance and I know that means I'm off balance. Yet, I sit here by myself, and drink. Hoping not to feel anymore. Hoping not to feel tired, depleted, empty, hopeless, worthless, fighting a fight I can't win. Being a lush doesn't make any of those feelings go away. I am a good Mom. I fought a good fight for Roo. Just as I am now for Blue Bell and Tinker Tot in the ways they need me. But I have to be honest and admit, telling the dearest I couldn't drive to pick up Blue tonight because I had a drink, relief. Telling the dearest he has to call my friend and deal with the pick up details, relief. Sitting here typing, letting it all out, relief. Sitting here in the quiet of my house, nobody calling, "Mommy!!!!!!" Nobody asking me right after the girls find something to play with and stay quiet for more then 6.5mins "Do you think I should do this or that to my truck?" RELIEF. Actually having a quiet minute to reflect upon Roo's life and remember her soft little cheek next to mine as the tears roll down.......Relief..........This Blog......Refreshing..........only because I can......

F*LUSSHHHHHHHH

Comfort?

2008-12-11T17:07:00.000-08:00

Blue Bell has been sick for days now. She's my healthy child. The one that rarely gets sick, that never complains when she is sick, and answers my endless questions of, "How do you feel?" I've been searching for comfort these past few weeks. I've been trying to accept the advice of, "You have 2 children that need you, you MUST move on and, be there for them." Well, unless you have walked in my shoes, some of you have I'm sure, moving on isn't an option, even when you wish is was.

I've been trying to find comfort in Blue Bell's and Tinker Tot's laughter and smiles. I've been trying to relish the delight of being a parent to a tween Blue Bell. I've been holding onto Tinker Tot's innoncence and cuddling her at night as if she was still 6 months old. No matter how hard I try, there is no comfort. So now, I face the inevitable. The pain, grief, and reality, that Roo is gone. That although, I live everyday for Blue and Tinker, that I live for their smiles and laughter, I live to fight to make their childhood magical, Roo is gone.

Roo is going to be 5. I imagine what it would be like to still be driving my mini-van, yelling at all three of them, "Mommy's driving and it's snowing, BE GOOD!" I imagine what her sisterhood would be like with Blue and Tinker. I can imagine, wish, what if, all I want. She's not here. What is here???? A very angry Blue Bell, a very thoughtful lovely Tinker Tot that doesn't understand her sister's anger. Tinker Tot is only 6...3yrs old when Roo left this earth. She doesn't understand how Blue Bell is angry at her for not being Roo. I get it, I do. I wonder though...How long we we live hurting and therefore being angry? They are just beginning their lives......mine has been full of disappointment. I'm still young, I still have dreams, I'm close to fulfilling my dreams. They are just beginning to dream.

There is hope all around us. Just as there was when Roo was dying. There is anger, just as there was when Roo was dying. There is the feeling of loss.....Tinker Tot doesn't spend enough time here with us. I sent her to live with her Dad to spare her of the ugly memories of Roo's last days. Blue and I feel the loss twofold. I'm fighting now, to have Tinker Tot week on week off.

Blue Bell is 10, wise beyond her years, so smart, so beautiful, so loving, so angry. Tinker Tot is 6, innocent, trusting, believing, loving. Roo is 5, forever 2yrs, and I wonder if she is 5 yrs old in Heaven, or forever 2yrs old. We all miss her in our own way. We all hurt for her. Everyday, I get up with a smile on my face. Thankful, for the blessings I do have. I easily get angry at those that don't recognize how easy their lives are, or bitch over stupid petty crap. Still, I smile, I listen to those petty complaints, I try my hardest to be the best Mom I can. Still fighting, to get Blue's innocence back, to get Tinker's time back with us, and to live without forgetting our Roo.

******FLUSSH*********

Introductions

2008-11-30T13:48:00.000-08:00

I've been wanting to start a blog for a longgg time now. I've lurked and read other blogs for over 2yrs and I have been touched by so many people, their words, and the part of their lives they share with us the Internet. I guess the hardest part for me has been writing this 1st entry. How much of myself and my family I want to share.

I suppose I'll start with introductions. I'm in my 30s and have 3 beautiful children, Bluebell, Tinkertot, and Roo. My girls and I have been on quite a journey together. My life actually took many twist and turns before I became a Mother. I don't know how this blog will evolve. I don't know if I will even end up having readers. What I do know is that I have a lot of thoughts I want to share and I'm sick and tired of all the would be posts, stories, and words pinging around my head like it's a ping ball game. I want to write my feelings, emotions, stories, laughter and tears and F*LUSSH.

So I've finally jumped in and it begins............

Roo's 1st Birthday

2008-01-13T23:35:00.000-08:00

Friday, December 17, 2004
HAPPY BIRTHDAY TO MY PRINCESS Roo!!!!!!!!!!!!!!!!!! I can't believe that Roo is 1 today. When she was born I had no clue the journey we were about to begin. I had no clue that in this last year Roo would help me to heal family relationships, teach me how strong I can be, bring Tinker's Dad back into her life, and touch everyone that meets her. I have learned so much from this little girl of mine, so much about life. I cherish everyday I have with her. I don't think that I will ever be able to truly accept everything that has happened to her. Bu,t I believe that I am ready to live again for my children, to give Roo much love and happiness everyday as she gives to those around her. All of my friends just absolutely fell in love with her last week. Every minute of the day someone was holding her and she just loved it. I know you all are waiting for details, I'm just so busy living again.

Her appt was awesome we go back on Jan 3 for testing. They are going to do the skin biopsy again, evoked potential testing on her eyes, eeg, mri, gi, pulmo, cardio, another swallowing study, we are gonna be busy. The doctor at the clinic put his initial diagnosis as Metabolic encephalopathy, mental retardation, failure to thrive, and short stature. Roo has not really grown since she was 8 months old. Her head circumference is the same, her weight up and down if we could hit 17 lbs and keep going I would be a happy mommy!, and her length has been the same for 4 months. I told the doctor, I know she is the way she is, but I would like a diagnosis to at least have something to go by. He said that there is a 30% chance we may not find one. He will go as far as I want to go in looking. He confirmed what I already knew about this being progressive. He would like to try the mito cocktail or something like that but he wants to do his testing 1st. I told him I was moving up in Feb. and was surprised when he said that the testing can't wait till then. So, we are on a better path, still not a great one, but better!

Roo has been doing OK, she has another ear infection she needs tubes. Her breathing is awful and I'm so sick and tired of bringing her to the doctor and them telling me its because she has no productive cough and that's just the way it is. I mean there's got be something I can do to get that crap out her throat and chest. I have been doing chest pt that her therapist taught me, I can move some of it but not always. I'm doing breathing treatments and just praying it gets better.

She's also been having trouble pooping lately. It seems like she is just not strong enough to push it out, poor thing. She just tries so hard and nothing so me and mostly her dad have been helping her out. I tried some mineral oil to see if that would help and after 3 days still nothing so we'll see. After being in Ohio last week, around my family and friends, I feel a great sense of peace. I know that whatever happens I will be OK, that my girls and I are surrounded by love, and Roo's life will change people and touch them. It's awesome just to watch my friends hold her, I can see in their eyes the love, and how she just literally melts their heart.

updated: Roo did touch so many lives and change people. I am forever grateful for what she gave here on earth. Blue Bells' 1st gym meet was on the 18th last year, this year the championships are on the 18th. I met a Mom and little girl last year at Blue's 1st gym meet. The little baby girl had Mito, what are the odds, I like to believe that many of Blue's meets are on the 18th to remind us that Roo is still with us and proud of the both of us. For the Mom I am able to be despite her loss, for the wonderful, amazing, shining, girl Blue is, despite having watched Roo die a slow death. She would be 5 now, I'm sure fighting with Tinker over my affection and attention, Blue being annoyed by both her little sissies, God chose this path that we all walk. I step back in wonder everyday at how much Tinker and Blue's bond has grown. How Blue has let go of her anger towards Tinker, because she is not Roo, how they both have flourished and grown. I miss Roo so much, I know Blue misses her too, each day the both of us live to honor her and her memory, understanding each other more then most Mother's and daughter's can........We may not talk about Roo much to the people around us, We may act like life has moved on, truth is we don't need to express through words anymore, those around us know how much we have suffered, how much we have fought to come back and learn how to live without Roo and through her memory, how lucky are we, that through a wink, smile, hug, or encouraging words, we know that everyone around us that loves us deeply, also carries our sweet Roo in their hearts.....

F*LUSHHHHHHHHHHH
blue raz