Friday, May 4, 2012
Noah could only ride with his legs apart for a brief while and then had to switch to side sitting on the horse. He had three attendants and a therapist assisting him ride. We hope that this will very much help Noah with his head and trunk control. He had many moments of slouching and looking downwards which the therapist assured us was contributed to the weight of his helmet which we must use for safety. Chris was able to join us today as we needed his help since it as a slightly longer drive for Noah to get there. He usually doesn't have many opportunities to witness Noah participating in therapy since he is at work when most of them are scheduled. I detected sadness today from him as he turned to me saying "it's terrible that we even have to do this." In translation I knew his heart was trying to tell me it was difficult for him to watch his first born son struggle so much. And it is difficult to watch Noah struggle to do something that should come naturally like lifting his head, or sit, but we have to swallow that pain and tuck it very deep so that we can continue on to help in the only ways we know how. We must only show him only our support and praise - never our fear and pain.
This, like most of Noah's therapies are not covered by his Medicaid. It will cost: ($800 June 4th-August 11th) ($1120 Sept 4th=December 17th) ($1120 January 21st-May 11th) $3040 for 1 year. These are not easy things amounts for us to come up with, if you imagine that we do 6 other types of therapies that are also not covered by Noah's Medicaid and are out of pocket costs as well. I try to hunt foundations and grants the best I can, but there are only so many avenues of help, only so many times you can even fundraise before you've exhausted all the goodwill and love the world can give to Noah. Not to mention that there is a level of self-pride that you must continually swallow each time you ask for help. It's not easy, and nothing about it is fun. It's probably the only time I've ever felt ashamed in my life - admitting that I cannot help my child with our own resources. It is taking more than a village it feels like it is taking the universe most days just to get through Noah's daily needs. No one could ever truly imagine the costs associated with a special needs child unless you were living it. Astronomical is an understatement. As with everything I'm just taking it a day at a time - sometimes a minute at a time.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Posted by Noah's Miracle at 7:12 PM