Spina Bifida Support Group

Donna,

I understand how difficult it is to watch someone you love struggle to do something you and I take for granted. Our children may or may not walk. I think the biggest thing I learned when coping with my expectations, is to remember that they are just that, expectations, rather than reality. I am not saying I believe my son will or won't, I'm saying every little advancement he takes I will look as a huge achievement.

I want to pass along something a nurse said to me when Emmett was born. Plan for the worst, but hope for the best. That's all we can do as parents. You are doing everything you can to facilitate her development. Please try not to be so hard on yourself if it isn't working to what you had hoped. She's trying to do as much as she can within her own abilities as well.

I try to remember that. If I'm doing everything to help my little man as much as I can, and he's doing what he can. Then with a little patience, and a little tenacity, maybe things will happen, eventually. If not, then I will work with him to the best of his abilities to give him the best life I can give him.

Bless, take care, and no you are not doing anything wrong.
Char

I have spina bifida and I did not start to Crawl until I was 2 1/2, or thats what mom says anyway. I'm in a wheel chair at the age of 34, I have been in it for 8 years. I think it helped me get a jump start because I had a brother who was just 2 years younger than me. I tried to keep up with him everywhere he went.
Often to the detriment of skinned up knees. I even remember wanting to ride a bike (which I learned at age 9) But mom told me "Keep trying and Keep praying" so I would get out my bike and try, then I would go to the back of the barn and pray, then go out and try again. I am certainly a believer in the power of prayer. but you have to be able to accept however God chooses to answer.

Thanks for respondin to me..im just new at this..my daughter is doin what they call an army crawl..she looks like a woulded soldier..but that does not stop her ..she amazes me everyday..all i was worried about was her not wanted to use her walker..cause when we take her to shriners they ask me if she tries to use it ..like she is suppose to be ..I just thankful that she is here with me ..she is my gift from God..I also have a son who is 5 and he helps me alot with her..so blessed..thanks everyone for ur support

Donna,
wow are we in a similar boat. I have a son who is three with spina bifida. we are still crawling and working on walking. He gets very frustrated with me and would much rather crawl. Every situation is different but I know one thing I would say is always evaluate your therapist. Do not assume they are doing what is best for your child. You are the advocate. Toby (my son) had a therapist that was fine with him crawling and using his chair now we have a therapist really pushing for walking and it has really made a difference. Just a thought.
If you need any encouragment please feel free to contact me or check my blog www.raisingtoby.blogpsot.com

I was about 6 when I started to walk. I still walk when neccessary but my chair is my mode of travel of choice now. I am 51. So "What if my child never walks?" Then she will get around in a chair like many of us do and she will be just fine. It's not how I get there, it's the fact that I DO.

Thanks everyone for ur comments..I am just gonna be thankful that she is here with me..im blessed to have her in my life!