Wednesday, August 10, 2011

Teaching Compassion for Handicap

I was very blessed to grow up in a home that taught all people are equal and unique. That is something that I insist get passed on to my sons as well. It is interesting when I have to answer questions like "where is that girl's mommy" when he met a girl who was adopted by two loving gay husbands. Or it's purely comical that I need to explain that all boys that have dark skin aren't the same boy. "A" and I talk greatly about how all people are different, but we are all the same and we need to love everyone. When it comes to race, sex, religion, sexual orientation, etc I know how to proceed, but when it comes to handicap people (especially children) I am at a loss. Growing up I was never surrounded with mentally or physically handicap people, except for perhaps deaf people. In have always been amazed at people who work with handicap children, and think there is a special place in heaven for them. I have also always known that I was ill-equipped to know how to care for them. I love them, but am confused and awkward on how to proceed past that.
Isn't she precious! This is my niece during Memorial Day weekend!
Well, in this last year I have been put in a place to learn how to better cope with handicap children. My brother-in-law and his wife (two amazing people) had a beautiful baby girl in March. She was born with Spina Bifida and Hydrocephalus. We knew the prognosis before the birth so we could all prepare (as much as possible). After tons of research I was able to discuss what this would be like to "A". It is always hard to discuss babies and children being sick. It is especially confusing because we have a recent baby of our own. I am still learning to handle questions like,  "Will brother or I get sick?" or "How do babies die?" 
"A" seeing her when she was a week old. Day after shunt was put in.
 Her Mommy howing "A" where it is safe to touch her
Isn't he sweet. One of those loves are one he picked out for her as a gift.
I fell in love with her the moment we snuggled!
This amazing little girl is such a fighter! In the first week alone she had surgeries to repair her spine, shunt put in the brain, and more. At 6 months old she is dealing with having to have a life-long catheter and repairing her club feet. This Friday she had to have her Achilles Heel clipped to help with the stretching of her feet. We are hoping she will be able to walk with the use of braces one day, but it is too early to tell. 
"A" gently feeding her! He sure loves her!!!
Happy Baby Girl
If I could just get "B" to be gentle with her too!
 I am trying to have time for "A" to be around her (they live 3 hours away) and also how to treat this little angel. When he saw her the week she was born he immediately wanted to go up and pet her spine wound (which we quickly found out was a "No, No!"). I think if he could have reached he would have tried to kiss the boo-boo! He is learning quickly to be gentle, wash hands before touching, not cough around her, etc. His favorite thing is feeding her a bottle and whispering he loves her. Since we couldn't be with her this week after the heel clipping "A" wanted to make her a get well card. I am learning right along with "A" and it has been a very rewarding experience for all of us! If you want to know more about our sweet niece the family has set up a website or if you need to know more about Spina Bifida go here.

This is her with Mom and Dad after 1st casting of legs

  Card "A" made for her heel clipping surgery. The inside is a hospital and a pick of her Mommy and Daddy holding her. Even though I did the writing he told me what to say!
Daddy Love!  

Check out this amazing video of her:


  1. Thank you so much for this beautiful page Sarah you madee cry! We love you guys soooo much!
    Demara's mommy

  2. Yay! I am glad you aren't upset I talked about her. Love you guys!!!