Strength

[Jess Mason]

Hi Everyone,

Have had a couple of bad days where I cant pretend this isnt happening anymore. I feel almost like I cant find the strength to keep going but am normally strong so cant understand why I feel like this. How am I going to make sure my little girl grows up without people hurting her and without all these health problems? How can she cope and why has this happened to us. I know I should be positive and grateful we are very lucky that we will get to have her but it all feels hopeless and so very unfair. It seems to be too much to handle and I wish I had a magic wand to make this all ok. Where can I get the strength to get through this???
:confused:

[Spiffynikki]

I was just telling another mom here that until the baby is out in the world no one knows how good or bad things are for sure, and that no matter what the docs say, you still have to have faith in your child to be everything they can be.

When my daughter was born, the docs said she would never move her legs, but now she crawls as good (and sometimes better) than other kids her age walk!

SB isn't without it's trials and tribulations, but these kids are SO worth it. I have met a lot of kids with SB besides my own DD, and it seems that no matter what is going on in their lives, they are sunny and happy and looking for their next adventure just like any other child. Lily (my daughter) has to have surgery on her right foot for the second time in a month, and she is actually excited because they said she could have a pink cast.

As a mom all you want to do is protect your child from harm, from bad times, but as a mom of a child with SB you realize very quickly that you have to let go of that, becuase if you don't you will drive yourself crazy!!!! Do what you can to take care of the things you can take care of, but don't beat yourself up over the things that can't be helped.

You will find eventually that you, your family, and your child, have more strength inside them than you could have ever known.

[angel]

Hi Everyone,

Have had a couple of bad days where I cant pretend this isnt happening anymore. I feel almost like I cant find the strength to keep going but am normally strong so cant understand why I feel like this. How am I going to make sure my little girl grows up without people hurting her and without all these health problems? How can she cope and why has this happened to us. I know I should be positive and grateful we are very lucky that we will get to have her but it all feels hopeless and so very unfair. It seems to be too much to handle and I wish I had a magic wand to make this all ok. Where can I get the strength to get through this???
:confused:

I am sorry to hear you are having a hard time. Let me offer a perspective for you that i hope helps. I know what it is like to be the child with spina bifida. I have grown up with it and let me just tell you first hand it is not that bad. It may look bad to you as you have never lived with it. You know what it is like to do all the things you do and you can't help but morn the "loss" of the things your child may not be able to do. As for your child she hasn't had anything taken away from her. She will never morn the loss of things he/she never had. Your child doesn't have any other refrence point, this will be all your child knows and if you are ok with it your child will be ok with it. Teach your child that they are no different, teach your child that life is good and that they should be proud of themselves. Treat your child as you would if they did or didn't have a disability. Never feel sorry for them as it is impossible to be of any help when you do.
I also know what it is like to be the parent of a child with Spina Bifida. My son has SBO and yes he can walk but that is the only bullet he dodged. He has the bladder and bowel problems, which if you ask anyone it is usually the biggest issue, not being able to walk isn't really that big a deal. He has had the tests, the operations etc.. I can tell you that i NEVER knew how my mom suffered until i had to go through this with my child. My mother suffered SO MUCH MORE than i ever did. I have never felt emotional pain like i did when my son had to go through the tests that hurt and the operations. I was ashamed of myself because i have been on the other side and I knew he would be ok. I knew he would cope, I knew he would thrive, I knew all of this first hand. I finally sat down and just had to feel and process those feelings and figured out why I was hurting so badly for him when I "knew better" As a parent you want to make it all better, it is in our nature to want to protect them from all pain weather it is emotional or physical. I was so upset because i couldn't make it stop, i couldn't make it all better. I couldn't take it on myself so my son didn't have to feel it. That is a hard pill to swallow for any parent. When you have a child you feel their pain magnified!!(this is true of any child with or without a disability)
I told my mom i never knew how she felt and she hurt so much more than i did. She said that she felt bad for the same reasons i felt bad. There was nothing she could do about it when I was going through all that. She felt bad because she could only imagine what i felt like. I assured her that she built "my feelings" up in her head to be much worse than they were. I know she did because i did the same thing and i have been there!!! I knew better!! I have finally realized it doesn't matter how much you know, how much of it you have lived it yourself when it comes to your children it is a whole new ball game!!
Your child will be fine and just remember this is all they know. If you don't teach them they are missing out then they won't feel like they are missing out. I never felt that way, I haven't missed out on anything I have everything i ever wanted in life. There are a lot of people that have no disability that don't have that!

I hope that helps a little,
Angel

[Sheena51985]

Angel's right. I'm not a parent, but I'm an adult with SB Myelo L-5 and Hydrocephalus. You can't miss something you never had. My parents always told me I could do/be anything I wanted as long as I worked hard at it and never gave up. It's true too! So, from my perspective, as long as they're taught to be positive through the tough times, that's how they'll be. Stay strong because children learn what they live, through their parents. Good luck and we're all here for you!

~Sheena

[LisaJoy]

Another thing to remember is that being born able-bodied is no guarantee that your life will be free of pain and suffering. There are no guarantees in life, period. The best we can do is make the most of what we have. The best thing you can do for your child is give her life, treat her as you would any so-called "normal" child, and give her every opportunity possible to develop her strengths. If the experience of the parents on this site is anything to go by, your child will be a joy and a blessing!

[Jess Mason]

Thank you all. I will keep thinking of these things when I am feeling down.

[LisaJoy]

Read this.

http://www.fetterman-crutches.com/perlman.html

[carrieandcam]

I understand how you feel.
My son Cameron has had one detethering when he was 5 yrs old. It was torture for me hearing him cry in pain, but I really think I took it harder than he did.
Now he is 8 and he needs another detethering. He wears a pull-up and has major bladder and bowel dysfunction.
He also has leg weakness and back pain.
BUT, he runs, rides his bike and plays like any other kid. ( he just tires out sooner than his friends)

I will be honest with you though.... it can be very stressful for BOTH of us at times.
I have to give him an enema everynight, he has to have urodynamics testing, MRI's, etc.... Sometimes I wonder how I will handle all of this on my own. ( im a single mom)
But he is generally a happy kid with lots of friends.

I am slowly coming to the realization that life has its ups and downs for EVERYONE. Some days are good , some are bad.
There are days when I cry a lot, and worry a lot, but then the next day, i will be laughing and smiling a lot.
I just try to take it one day at a time, and SO many of my friends here on this site have helped me to just stay on today, and try not to worry about the "what ifs?" ( which I used to do all the time... worry all day and all night about what could happen, or might happen...)


We are all here for you if you need us.
Carrie