I'm listening to Tim talk to Oli in the other room, answering Oli's questions about 1) whether his friend Ian will still like him even though he wears diapers, 2) why he was born this way, and 3) why he wasn't born a cat or a dog (Yes, the questions run the gamut). It is breaking my heart, and we are getting more of these questions than ever. We've started catheterizing him, in the hopes that he can get out of diapers. Although I question doing it, b/c it isn't medically necessary, it is clearly very important to him to be out of diapers.
Oli is such a sweet boy, so patient in his questions, and as of yet, not angry. I fear that someday he will be, and I won't know how to handle it. We got the name of a therapist, who I have put off calling, but think I will do it now.
I want to give him all of the resources he needs to be happy and successful, but sometimes it is overwhelming, for both me and him. So far, we have operated under the philosophy of getting him what he needs, but without making spina bifida the driving force behind everything he does. So, he is not in 5 different therapies, which could be helpful to him, but in focusing more on family outings and family time, we hope he leads a more "normal" life. Now that he is getting older, and his peers are doing so much that he can't do, this philosophy might have to be tweaked. It his hard to find "typical" sports and activities that he can be part of, but there aren't a lot of choices for kids with disabilities in the local vicinity. We are lucky to live near Philly, which has the potential to offer more, but with two other kids and two full time jobs between us, Tim and I can't take advantage of all of these opportunities. And cathing, though a wonderful way to get him out of diapers, keeps us bound to him every 2-3 hours, which means we can't really be mobile for much more than that in each outing.
At the end of the day, I want him to be active and engaged. I need to figure out the best possible way to do that and keep 1) my sanity 2) his sanity 3) Mackensie and Miles satisfied. I am a big believer in less is more (activities, stuff, etc.), but I don't want to fall into the trap of too little too late.
