Monday, June 6, 2011

The Space In Between

Bookmark and Share
It seems as if almost everything I have for Noah isn't working these days. He looks like he's outgrown his highchairs, the double stroller we have catches his long legs because he moves them all the time and gets stuck, so it doesn't work, leaving me without a way to really stroll both children at the same time. I lack the funds to go out and purchase a side by side double stroller and I still think Luke is too small for such a thing, I have no idea what to do with Noah's seating. I found a Seat2go online that looks promising but it's so expensive and the you have to buy the headrest and abductor separately, both I think he would likely need. And then I run the risk of it getting here and it not working. I got the Tumzee, it's worthless. If you are a special needs parent considering it, don't. I'm not even sure it's comfortable for a typical growing child. Of course to return it is a restocking fee of 15 percent and I have to pay for shipping...

I'm very frustrated, that I can't seem to find something that works, it limits my ability to do things. I can't even attempt to go out with both boys anywhere really, I'm pretty homebound without help. Noah gets upset frequently and there is no way to hold him and Luke at the same time and without a double stroller of some kind it is pretty much game over.

Chris and I attempted a Home Depot run the other day with both boys realizing the double stroller we have just isn't going to cut it for Noah's muscle tone as he fights to get his legs out from underneath the foot rest. So Chris carried his limp body through the store, as people stared on. Sometimes it feels quite horrible to be this "freak show." An unkind glance is just as bad as an unkind word. You constantly feel on display. Often Chris and I feel like we really don't fit in the world on either side. We no longer fit in with society's definition of "normal" and we don't quite completely fit with the "special needs community."

Other families with special needs have these groups - mom support nights and such, they network in ways I simply can't. And if you find that you're out of favor with one then you're really out of favor with them all, even if you've never met a single one. Dads, really are entirely left out of the equation in the land of special needs, leaving it often to a female-drama filled arena. Maybe that's because many abandon their fatherly and husband duties when presented with a life-altering special needs child, I don't really know. It's a phenomenon that I ponder and recognize exists.

I must admit these past few days I've felt a combination of both sadness with a hint of bitterness. My feelings are in no way because of Noah, it's more because I cannot provide him what he needs. I can't get a functioning stroller, I can't get him a seat to eat better in, really the list is endless and it leaves me with this immense failure feeling. A mother that cannot provide. I feel stuck and often hopeless. I convince myself that if I had the access to the right equipment that Noah would be making more gains. I've tried foundations without success, I can't even afford these recycling equipment groups, like They say you get a discount, but even $500 is out of reach for an item that is originally priced at $800. I've tried to contact groups like Kids Mobility without any response. There are days when it just feels simply useless despite my best efforts. How does one stay on the side of optimism when it feels the odds are constantly against you?

I found this little prayer box at a local garden store. It has three little angels inside for prayers. I wish it had three hundred. I need all the little prayer angels I can get. Each little angel is carrying a special prayer. As hard as things get I know God is there, and I have to keep trusting "where there is a will there is a way."


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.