WOW... its been 2 months since I last wrote. I promise I will be better about this. BUT...things have been SOOOOOOOO AMAZING!! Brody has really out done him self in proving the Dr's wrong. It makes my heart happy that he is THRIVING (as put by his Drs). Every Dr. apt that we have gone to, they have been SHOCKED at how well he is doing, and his little personality. GOD IS AMAZING. We are still working on trying to get him mouth fed, and also working on physical and occupational therapy. Our therapist couldn't be happier with his progress. He loves his paci and his crinkly butterfly and will do just about anything for those two things. My heart is over joyed with all his progress, but sometime I get taken back, and just cry. I cry for EVERYTHING. I cry for him. I cry because he smiles in his sleep when I touch his face or when I close his eyes for him ( part of his syndrome means that he falls asleep with his eyes half way open, but if you close them for him they usually stay closed). I cry when he silently giggles because Im "eating" his tummy or feet. I cry when he just wants to be held and rocked to sleep. I cry because all I can do is SMILE and Thank God for blessing us with the past ALMOST 7 months. 7 months is longer than some of the parents like us got. I cry because my heart hurts to think about that!
This week has been exceptionally hard. This morning has been hard. I think because its raining out side, all I want to do is cry. I see him smiling and it breaks me that he has NO idea what is coming in a month. He's just a happy little soul, and it breaks me inside knowing that he has a SERIOUS surgery coming up.
April is the month. Its the month we start skull reconstruction. And all I want to know is what I DID wrong for MY baby to deserve this. WHY US? WHY DOES BRODY HAVE TO BE PUT THROUGH THIS? HE IS JUST A LITTLE INNOCENT SWEET BOY! I cry because I want to take his place. I want them to cut MY skull open. NOT HIS. I want to take his place. I want him to be sitting on the side lines, watching and waiting. NOT ME. I want to be the one with silence. NOT HIM.
We set the surgery date a couple of weeks ago, and its all I can think about. It stresses me out. But then I see his happy little face, and I let it go. I remember what I told my self in the beginning. "I can't change the past, I can't predict the future, all I can do is live in the moment". So for now, I will live each day to the fullest with him. I will cry for him, I will laugh for and with him, I will LIVE for him. I will PRAY AND PRAY AND PRAY for him. and cry some more.
http://www.gofundme.com/58c7p4
with tears in my heart and in my eyes,
-S
Came across your blog via the Mother's Milk Bank FB post. I'm a mom of a "heart baby" who has had 2 open heart surgeries and has at least 2 to go, and I can certainly relate to this post! My daughter also had a trach as a result of bilateral vocal cord paralysis during her first heart surgery. She was trached at 3 weeks, and we got it out just last month when she was 16 and a half months old. She was a donor milk recipient, too, since even though I pumped for 15 months, I just didn't produce the amount she needed. Anyway, I'm not comparing myself to you, by any means, but I just wanted you to know that from where I sit, I think you're doing an amazing job. What a lucky little dude he is to have you guys as parents. Wish I could take you out for a margarita! : ) Keep up the great work, and best of luck with his upcoming surgery. I'll be thinking about you.
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