Wednesday, December 31, 2008


  • 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 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 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.


Growing Up.

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 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!

Saturday, December 27, 2008


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.....................


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 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 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.....


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

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!!


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 more tini and then...



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.


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


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." 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 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.


Didn't you know????

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 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, NOW do I change???? Didn't you know it all starts with Plan A? Cause yes, yes I am, a CONTROL FREAK.


Friday, December 26, 2008

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............


Sunday, December 21, 2008


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.


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 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.

Saturday, December 20, 2008


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....


Sunday, December 14, 2008

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

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........


Friday, December 12, 2008


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.

Thursday, December 11, 2008

I'm alone

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......



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.