Chase's journey with Spina Bifida
Thursday, October 27, 2011
Coping
I've taken the morning off the last two days to try to catch up on sleep and maybe get the house back in order. I feel like a bad mother, but physically and emotionally I needed the break.
It's hard to go from one extreme to another. We had 14 weeks to understand and plan and research and network anything and everything we could about Cerebellar Hypoplasia and in one day, that gets thrown out the window. I had time to cope with what was going to be and now I have to go back and figure out what is going on. I have to research and understand and cope and accept all of this new information. The difference is it is here and in my face and I don't have that time to fully understand before Chase comes, because he is already here.
I don't understand why this wasn't found. I had the quad screen blood tests, the ultrasound that checks his neck, an amniocentesis, 2 fetal MRI's and multiple ultrasounds. How was this missed? I should have been able to prepare for this instead I was prepared for a totally different diagnosis.
I didn't get to hold my son after he was born. I still haven't actually held him. He has to lay face down on a mat and his head can't be elevated. I didn't get that skin to skin contact people talk about that is so important. I feel it really and truly is. I feel it deep in my heart.
So what now? Now I will google, and worry and learn and cope and hope he comes home soon. He will need a shunt placed. When this will happen, I don't know. I didn't ask. It was too much to take in and the first time I was told I was working on 4 hours of sleep and I was all alone.
I've read that it could have been a lack of folic acid during pregnancy. I took the vitamins. I started taking them in September. I even chose cereal with folic acid in it.
Why my baby? What about the "perfect" babies born on "I didn't know I was pregnant" who's mothers didn't receive any prenatal care. What about the teen mom's who have perfect babies. I followed the rules. I didn't eat lunch meat and I cut out my caffeine. Why me? Why my baby?
He is so so cute. Why does he have to have this. It's not fair to him.
8 days old and has already had 2 surgeries. It breaks my heart.
-e
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I'm so sorry you are having to face this at all and I agree that it isn't fair to you or to Chase. All I can say is God picked you to have him because he knew you could handle it. He knew that someone else may have given up on such a little boy going through struggles that most of us as adults will never understand but that you-you and B-would fight to the ends of the earth and beyond to make sure that Chase gets everything he will ever need. You aren't just going to get through this... you are already succeeding and making it with flying colors. Know that you are loved even if we have never actually met Chase has many aunts that would do anything to help you and B and Chase. ANYTHING.
ReplyDeleteI can't even imagine what it's like to have to go through this with a newborn. But you are doing everything you can, and getting rest and time to try to absorb things is part of that. Don't feel like it's your fault. Sometimes things happen that you just can't control and it's through no fault of your own. You did all the things you could.
ReplyDeleteJust so you know? My best friend in the whole world has spina bifida.
She's got lipomeningecele which is a different form, but she's 28 and lives a pretty normal life. She's always been an inspiration to me because despite the fact that things haven't been entirely normal and she had to have a lot of surgeries when she was little, and despite the fact that she has to deal with crutches and other problems having to do with her spina bifida, I'd really hesitate to call it a disability even, because she overcomes it like a superstar every single day. If you're around her you completely forget that there's anything different at all.
She's an awesome fun person to be around that I'd hate to be without.
The wonderful thing I learned from her is that doctors know way more about it now, and the medical advances are able to help keep people with spina bifida healthier and help them lead healthier lives.
With such a loving momma and dad behind him, he's gonna grow up to be someone's awesome best friend.
Hugs to you and your husband, you're amazing. And Chase is a little superman.
Emily,
ReplyDeleteThank you for sharing. I'm so sorry that you are having to go through with this. You are right that it isn't fair that this happened to you when so many people have healthy babies that they don't cherish or care for. Chase is lucky to have you as a mom! If he was with a different mom, he might not be getting the love and care he needs now. I hope you will get some answers soon and I hope you will continue to take it one day at a time. Hugs.