Wednesday, April 28, 2010

There is always a rainbow after the storm passes

I have been feeling nostalgic today. This time one year ago I was anxiously waiting to visit Addison in the hospital, with the possibility of holding her for the first time. As I look back at those pictures I can't help but cry. We have all been through so much and come so far! 

Addison had just battled one of the worst infections she had while in the hospital. She was on the bubble c-pap and had just finished getting a blood and platelet transfusion. She was eating 6ccs of breastmilk every three hours(which wasn't full feeds for her). She weighed 1 pound 9 ounces and was starting to really show her feisty side. 

I want to share with all of you my journal entry from the day after my birthday: "Alot has happened in these short 24 hours. You have another infection baby girl, but mommy knows you will pull through! They had to stop your feeds again to prevent any further infection, but don't you worry you will be eating again in no time, because unlike last time you are fighting this one off quickly! As I look at you I am AMAZED! You are so strong! God has put you on this earth to do special things little girl and I know that even when mommy isn't here with you, God is holding you close to his heart.(Wet spots on page from my tears) My life would not be complete without you in it. Both you and your big sister remind me of what endless possibilities lye ahead for all of us! I can't wait to hold you in my arms without all these tubes and to watch your sister teach you how to play dolls and wrap your daddy around your finger! Love you baby girl!"

It's amazing to me that all the things I wrote have come true. Addison has continued to show how strong she is and overcome obstacle after obstacle. Chloe had taught her how to both play dolls and wrap her daddy and I have held my daughter with no tubes and wires! God is good!

Thank you for once again giving me the best present ever! Thank you.......

Monday, April 19, 2010

Heavenly Weekend

Ahhhh...I am blogging again! I never would have believed that I needed this so much, alas there are many things I would have never thought would happen that have. Which as I see it is the true miracle of life...the unexpected joy.

March of Dimes, walk for babies was this past weekend. I had been looking forward to that day for months! It was everything I expected and more. I was my usual OCD self before the walk started. Making sure I had every one's shirts, answering calls to give directions and in general feeling like a chicken with my head cut off, while portraying what I hope was a cool exterior. That's me though, go go go, but I feel as though I am at my best in those situations, like it's the air that fills my lungs! I love helping others and making a difference, it fulfills that need I have to do and be something. It feels good to finally be in a place where everything, as unconventional as it may be, just fits.

Watching all those people come together for a greater cause because in some way my daughter has touched their life, is an incredible feeling. Everyone was smiling, laughing, and some even dancing! ~Shout out to my best girl in the world Jess~ It was amazing to see the different dynamics between everyone, to see what the walk meant to each individual. My hope is that I will continue to be a part of this charity has well as another that has stolen my heart. STOP CMV The CMV Action Network has swept me off my feet! I have to say that even without singing me love songs and buying me flowers I am smitten.

I have had an outpouring of sincere concern and warmth from everyone associate with this network! At the same time I have to admit that after reading these other stories, I feel as though I should be ashamed of myself. I have struggled so much to come to terms with being a parent of a child with special needs. That I have been angry, disheartened, lonely and at times just plain bitchy. When in reality I had so much to be thankful for.....meeting these women has humbled me. It made me realize that Addison is one of the lucky ones and instead of feeling sorry for her or myself, I need to show God just how thankful for his blessings I am. A good friend told me, that it is important to go to bed every night and tell god how sorry you are for any mistakes you made that day and ask for his help to do better tomorrow. What a honor it is to have a father who no matter how much you may curse him, will forgive with no questions asked!

So be prepared world, for it is my full intention to make my mark!!!

Tuesday, April 13, 2010

Can I get a hell yeah!?

Today has been a day full of unexpected excitement!! Addison had her first infectious disease appointment and boy was the hour wait worth it! The doctor told me that Addison was the BEST case of CMV she has ever seen. WOW! A medical professional who has been working with CMV patients for 20 years, thinks my daughter is going to be fine! Quote, "Her brain is fine, if her brain is fine all the rest will fall into place." It was amazing to hear, I spent a year in constant fear of what was to come, now I have some relief. It's almost like vindication for those OB/GYN specialists and NICU doctors that told me she was going to die. That I should just let nature take it's course. Every fiber of my being wants to take Addison up there and say, "Which one of us is cruel?" Booyah Bitches! Yes, I realize this is extremely juvenile but I can't help but want to rub their noses in her progress. Alas, I will behave and find a more productive way to channel my....ummmmm pissed offness? LOL

Speaking off productive ways to channel my "stuff", I am officially the Atlanta representative for STOP CMV, The CMV Action Network!! Rock on!! I am very excited to become more active in the organization and to hopefully see the day when they make CMV screening a standard test for women in their child bearing years.

I hear a spoiled child crying and I can't help but get up to spoil her more......

Monday, April 12, 2010

Four score and one year ago

Well first I would like to take a minute and say hello to the blogging world! This is all quite new for me, so here we go!

On March 27, 2009, my precious second daughter was born via emergency c-section. There were many complications, I am sure to tell you them all in time. The first of many was not only her severe prematurity but her weight. She was 13 ounces at birth, which is not normal for a child born at 26 weeks 4 days gestation. I was made aware of her dangerously small size a few weeks before her birth but was unaware of why it was happening. Soon after her birth my husband and I were given the news that our daughter had a congenital disease neither of us had ever heard of, Cytomegalovirus, CMV for short. This virus is actually why I have started this blog. I need a way to release and hopefully give others hope, when there seems to be none.

I will say good-bye for tonight, as I am drained from my recent strep throat. More is sure to come, for as always my life is NEVER boring!