These shoes are too small
Have you read the link above, the one titled shoes? If not, read it now.
There are thoughts we have, “we” the parents of the severely disabled, that we cannot share with “others.” Even “others” who love us. Unless you are in those shoes, you cannot know. Even if you work with the severely disabled daily, if you are a NICU nurse, a doctor, clergy, even an aunt, uncle, or grandparent … you cannot understand. We are talking about the fruit of MY loins. I created her. Yes, along with her mother, who understands, but sometimes, even within the bounds of love and marriage, somethings are not said aloud.
Anonymity allows me to share. Although I do speak out to some, well, that is how I know that “others” cannot understand.
If you are a parent, have you ever had your child in the hospital? Really and truly sick? The kind of situation where you cannot sleep, all you can do is worry and throw up? OK, so now, what is the one thing you pray for? All you beg God for and the only thing you think about?
Please, God, anything to make her better …
Well, some of us have been there. But the prayer is much different.
Now read shoes again.
Just found this blog, and this post… this post I understand.
My daughter was born a little over a year ago, and she was perfect. My wife and I brought her home the next day, our perfect little girl. And hours later I was setting landspeed records getting our perfect little girl into an emergency room, terrified out of my mind. Everything from the waist down had turned, for lack of a better term, baby blue. She was lethargic, and non-responsive to anything below the waist.
Our long run result has left us with a much happier result, and for that I thank God and some absolutely epic medical care.
Those long days, where all you can do is stare at your baby, this little person made from a little scrap of you hooked up to more tubes and wires than a person should see in a lifetime, and wonder ‘Will she ever wake up?’ ‘If I blink, will I miss something critical?’ ‘If I sit down, can I get to her fast enough?’…
All the while trying to help a woman who is going through exactly the same thing on top of having just delivered this baby…
God Bless you sir, for being what a Father should be. Thank you for sharing your story.
I am the mother of a 5 year old boy who sounds a lot like your daughter. My son cannot talk, cannot walk, cannot sit, cannot communicate (other than different sounds and crying), has no facial expression, must be fed pureed food via a Habberman bottle (that’s fun), requires diapers, is very small for his age, and has a multitude of different medical issues. To date he remains undiagnosed. Big surprise.
I have been searching for years to find others “like me” and who I could relate to and who would understand what my husband and I are going through on a daily basis. I happened upon your blog for the first time tonight thanks to the most recent edition of the magazine “Exceptional Family” which indirectly led me here. I feel like a door has just been opened in my little crazy world.
I get this (and many of your other posts so far). I totally and completely, with every fibre of my being, get this.
“We” thank you.
Um….You are absolutely right. I cannot possibly imagine what it must be like to be in your shoes.(I know that I am grateful that so far, my children appear “normal”. I hate myself for saying that, in a way, because I ask God a lot..”Why is my sister (Cerebral Palsy), my best friend (Charcot-Tooth Muscular Dystrophy), my brother (blind, severely mentally retarded) disabled?” But, I do have the benefit of being in my own. I can tell you waht it is like to live with my twin sister. To be a child and hear her scream as they took pins out of her legs, to watch 8 or more people hold her down during a medical procedure, to see them come out and tell my mother that she died on the operating table..and that they bought her back. To see her go on to secondary education and to now live on her own and have depression and diagnosed with bipolar. I do not know what it is like to be you. But, I do know what it is to be me.
Thank you. There is so much wrapped up in each of us, it’s often hard to get past what you are dealing with to have compassion for others. We were in that place, asking for a miracle, peace, anything…
I understand. Been there. Done that. 19 surgeries, over 70 hospitalizations. Now, I’m empty. Trying to figure out why I can’t try to figure out what my son wants anymore. Why I can’t hear him laughing at SpongeBob anymore (one of his favorites too). Why I can’t hear him squeal at Garth Brooks anymore (more favorite than even Mamma).