Fun with Spina Bifida

Ok sarcasm is alive and well in the Rayment family. This is a bit hard to write about since today has been a good day, but I have to do this now. Jeff is watching Heroes (missed way too many episodes to make any sense of that show) and both of the rugrats are asleep so I have a few seconds.

Being a parent of a child with spina bifida comes with many challenges. The following comments do not apply to all children with Spina Bifida since this neural tube defect affect individuals in different ways – these are just some issues that we have dealt with Jake.

Jake’s particular form of Spina Bifida (Lumosacral myelodysplastic Lesion) has been both a blessing and a curse. Many children with Spina bifida have an obvious disability, but with Jake at first glance you cannot see any “obvious” disability – other than the fact that Jeff and I are his parents. Since it is not “obvious” that he has a disability some of the unpleasant characteristics of his disability are ignored. Sorry I am not much of a writer so I am struggling at explaining this. For example many children with Spina Bifida are also diagnosed with ADHD. So if a child in a wheelchair has ADHD people dealing with him/her accept this right away. When your child looks so called “normal” they just think your kid is bad. Trust me, I cannot tell you how many times I have been labelled as “Bad Mom” because of my child’s behaviour. Any mom of a child with ADHD can back me up on this one. We also don’t get as much medical information from health care professionals since “Jake has it pretty good for a kid with Spina Bifida” (word for word from a certain Dr). The hardest part for Jake and us is that he is 7 and “still” wears a diaper. Again, if he was in a wheelchair or braces no one would ask us about it and he would not be teased about wearing a diaper. Since he has no sensation in his bowels or bladder – he just doesn’t know when he has to go. This can be hard because all of a sudden he smells, but had no warning that he had to do a number 2. Luckily most of the people he is around understand his problem and just tell him to go change – but that won’t always be the case. Kids are cruel!

I worry every night that eventually someone will make him feel bad because of his disability. He has been so lucky so far that no one has treated him seriously bad, but I worry that one day it will happen and I will not be able to protect him. I honestly would give up my life to prevent this from ever happening to him. Even though he drives me wacky (again if you’re a mom with a kid with ADHD – you know what I mean) I love him with all my heart!!!

Sorry I don’t think I can write anymore tonight. I’m tired now and I just can’t think anymore. That and I have to cry. Although I took folic acid while trying to get pregnant and all through the pregnancy – I still feel that I did something wrong and now my child has to suffer.