What is this? Why did this happen? What did I do to deserve this? All these questions were going through my mind. I felt ashamed. I felt hurt and didn't know what to do and who to turn to.
I said out loud "I just want to scream and cry". My doctor and nurse both said "it's okay to cry". "You want a normal child and this is not normal".
I cried and cried and cried some more. I had never heard of this and we were told that we may be driving to St. Louis to fix it, every five days. Next came them telling me that her blood sugar was too low and her breathing was not good and they had to monitor her. I was so upset, then I felt ashamed that I was ashamed of her feet and ankles. I just wanted to hold her and love on her and tell her it was okay and mommy and daddy would take care of her.
That night was hard on me. I couldn't keep her in my room because they had to observe her all night. It seems like I cried all night and every time I slipped off to sleep I found my self waking up and praying and talking to God and I kept asking why. I wasn't sure if she would ever walk and we still aren't sure of that but we know with God with us anything is possible.
The next morning our pediatrician came in and told us her breathing was better and her sugar levels were good now. Next he explained to us that we could see Dr. Capehart in Tulsa, OK and he has been doing this for years and was one of the best there is to take care of this disability.
WOW ... "disability" that is hard to swallow. I hate that word and it makes me cry just to type it. But yes, she is considered disabled as of right now.
We were told that we should start as soon as possible on her casting. The casting will help correct it and then she may require some surgery.
So much information to absorb in such short time. All this in just one day of her life.
You are not alone in this journey. I know how it felt the moment you were told about Megyn's feet. I felt the same way when I was told Madison has Down Syndrome. Have you ever read the story about the Trip to Holland? There are several versions on-line but it sums up how you felt the moment you are told your baby has a disability. It is like you planned out a great vacation to Italy but somehow you have landed in Holland. You have to rearrange your plans for the future but your life becomes a wonderful trip.
ReplyDeleteI know how devastating it is to feel like you did everything the way you were supposed to but you didn't get the outcome you thought you were supposed to get. Believe me, this time will feel like a trial, and it will feel like the hardest things you have ever had to do, to think about, to figure out, to deal with in your entire life, but when you come out on the other side, once all the castings are done, you'll all be stronger for it. James 1: 2-5 was a HUGE blessing for me when we went through our issues with our son being born early. When these things happen, we moms just deal with it and make it work because its our baby and that's what we know we're supposed to do, but this doesn't mean we can't be frustrated/aggravated/sad/mad/etc about it all. Writing about it really helped me get through it all every day. Please know you'll all be in our prayers daily.
ReplyDelete-Misti
hi. just stumbled onto your blog. i haven't read it all, but this reminded me so much of my daughter's birth. we didn't know about her clubfoot prior to delivery, so it was quite a shock. (she also had low blood sugars, but didn't end up having to be monitored long term. honestly, i think they were keeping her away from me because they were checking to make sure the clubfoot was an isolated "defect" and there was nothing else wrong. which makes me super angry now looking back) my ava is now 6, and we've traveled a loooonnngg clubfoot journey. she saw a doctor in philadelphia for the first 2 1/2 years, then we took her to st. louis for a 2nd opinion/treatment of a relapse, now we finally found a doctor we're happy with back in philly. we have managed to avoid surgery, with the exception of a tenotomy.
ReplyDeletei don't discuss ava's foot on my blog really...i didn't have a blog when she was born. i really wish i did. even though it seems like you don't want to remember it, now looking back i wish i DID take more pictures.
anyway, just wanted to say HI! and i hope the best for megyn and her little feeties!