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 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.

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

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

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

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...







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2004

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

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.





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