"We've had a little set back." These are not the words you ever want to hear but ones that come all too frequently when dealing with a special needs child. Set backs come in all shapes and sizes and sometimes seem overwhelming and insurmountable. Other times they are just a matter of making an adjustment or waiting something out a week or two. We've had our share of them through the years and lately there is what seems like a very challenging one looming over us.
In the hospital after the accident, set backs were things like pneumonia from the breathing tube, a staff infection in the bloodstream, the need for high top shoes so that the muscles in the feet could readjust for walking, yanking out the feeding tube before they were really ready to survive without it and days where the brain was so agitated that it made therapy an impossible venture.
Today, set backs seem larger or it may be that I'm just tired of them so every single one looks much bigger than it really is like the shadow a mountain casts when it blocks the sun making the mountain appear three times it's real size. In my mind I know it can be overcome, but the thought of all the time and effort and probably rejection we will encounter just makes me hesitant to start the seemingly long climb it will take to surmount the problem. If only it were something medicine or a doctor could fix.
During the years since the accident, I have relied mostly on the school district for therapy and advice. Before the end of her senior year I contacted a vocational rehab service in hopes that she would be able to get employment of some kind. In the meantime, I also started the long, drawn out and extremely frustrating process of seeing if she qualifies for SSI. Mostly with SSI, I've just run around collecting information, which never seems to satisfy them. In the end, she will probably be turned down at which time we will have to secure a lawyer-just one more expense in the sea of financial obligations that we never dreamed we would be responsible for. The lack of SSI has also limited what services she can receive because some agencies expect partial payment for things that SSI would cover if she had it, which frankly we can't afford. So OVR has "referred" us to another agency and so we start the process all over again. In the meantime there is just a lot of frustration because employment is desired but can't be found. And so we flit from one agency to the next until the age of 21, which may open a few more doors than we can open now, but that's 3 years away!
In the beginning I determined that set backs would be looked at more like detours and that worked well for me. And in the back of my mind, I still see all of this as a means to an end. I guess I was just hoping that the trip would end sooner than it appears it will. Am I being selfish? Probably, a little. Secretly, I don't want to be like our neighbor who is in her 80's and still caring for a brain injured son on the weekends. Sometimes I feel torn between wanting to do things that women with "normal" children are doing at my age and wanting to do whatever I can to help my child. But I have to remind myself that the grass is not always greener on the other side of the fence. I'm like the dairy cows we had on our farm. We would spend hundreds of dollars planting something special for them to eat. We were always so excited to let them out into that pasture in the spring so they could enjoy it. After a day or two, where were they? Sticking their heads through the wire fence with their long, sticky tongues grabbing thistles and milkweed and pulling it into that nice, lush field!
Today I have to remind myself what the other side of the fence looks like in my case. If my child had died, I would be doing what women with "normal" children are doing but would it be worth the empty chair at our table, the open spot under the Christmas tree, and all the photo pages that would not be filled with heart snapshots through the years? I think not. It would be a burden far more heavy to bear than what I have now.
So, I'll step back, take a deep breath, create a plan of attack and take a run at this mountain! If I don't quite make it over, I'll slide back to the bottom, look at it from a different perspective and try again and again and again, if need be, til I reach the summit and can shout victory!
No comments:
Post a Comment