Friday, November 20, 2009

thanks for the memories

As my dogwalking foray has taken a serious turn into a near-addiction, I now have even more time to think....(!), and have been thinking about life in general, especially Mason and his non-verbage. It's amazing that someone nicknamed Motormouth growing up and who loves food and has brown eyes/hair would have a child who does not speak and has trouble gaining weight and has green eyes/blonde hair. Kind of ironic. As he approaches his 12th birthday, I am inclined to think about his birthdays past. Two doctors told us he wouldn't make it to his first birthday, so that was a monumental milestone, even though we held our breath for the 12 months leading up to it. That was also the time he had his feeding tube placed, so it was a very stressful time for all of us. The tube was placed too close to the opening to his stomach, so he could never tolerate a bolus (all at once) feeding without extreme vomiting. This meant slow drips of food, over 8 hours, so that he wouldn't get sick.

The second birthday was met with him still having his tube, but having gained weight and doing fairly well, health-wise. The third birthday was still surrounded by lots of doctor appointments while we lived in Omaha, and no more tube...(after force feeding him for the first few years of his life, he somehow learned to swallow without danger). Our appointments were sometimes as many as 1 per week. Year five was busy with medications and appointments, but probably slowing down somewhat from the years prior. Year six was his year to start 'kindergarten'...although he really didn't. That was heartbreaking for us. Year seven was the neurologist reminding us that, "If he doesn't start talking by the age of 8, he probably won't." Year eight came and went with no speech, no skills at toilet training, etc. Years 9-12 have sped by, and here we are, still working on toilet training and still no words.

Mason's Palmtop 3, his speech device, broke for us again about two weeks ago. It was tough to watch him want to tell us things and be completely unable to do so. It gave me pause to think what his life would be like if we hadn't insisted they try a speech device with him, and if we hadn't finally found a speech therapist who agreed. Her name was Lindsay, and she was an angel. Not only did she agree he could use one, but she lobbied ferociously with our insurance company for him to get one, and did miles of paperwork to get it done. (Although she has moved on from his school, she is still referred to as "Angel Lindsay" in our home.)

His first device had twenty available spaces in a plastic rectangle about the size of a piece of paper, about 1 inch thick. He had about 5 laminated pages that we could switch out with different words on them. His current device is about the size of a brick, with tons of pages that link together with other pages. When Lindsay first showed it to me, I thought, is he going to be able to do this? Sure enough, not only can the little stinker use it, he can use it while looking at it upside down, (when it's plugged into the wall to charge at night) he can use it while not looking at it at all, and it only has 3% memory left on it, since there are so many words/phrases loaded onto it.

We are so fortunate that we found someone to help us give him a voice. I sat at countless IEP meetings, telling the staff that if he had a way to communicate with us, he'd have something to say. I was always met with, "He's not ready," or, (a popular one) "He's not cognitively aware enough to learn to use one."

That same child can now identify all of the family members with his device, tell us his feelings, tells me to "change the channel" if I try to listen to Siriusly Sinatra while he's along in the car, tells me he's "bored" when I walk with him through the card stores, tells us he's too cold or hot, tells us he's hungry and what he wants to eat, tells us his chest hurts when we take him to the doctor, and tells us which show he would like to watch on tv. It's about as close to a miracle as I think I'll ever see in my time on the planet.

If we had listened to the "experts", Mas would still be learning one new sign language motion about every 2-3 months, and he would have no functional way to communicate. I'm not only thankful for our angel of a therapist, but also thankful that we persisted in insisting they at least try him on a device, even though everyone told us he wouldn't be able to use it.

I'm not sure at his point what Heaven means to me, as I learned about one type of Heaven growing up, and have read about many others since then. Will my old dogs be running around? Will there be streets of gold? Will we recognize our loved ones? Well, I don't know the answers to any of those things, but I have to believe that God will provide Mason with his own voice. Not an electronic, robotic-sounding child's voice that sometimes doesn't work, but a lyrical, beautiful, pure voice filled with love and wonder at his new surroundings. Hopefully he has to wait a long time for it, but I hope he is someday rewarded greatly for the challenges he's had to face in his life. Twelve years of fighting, twelve years of laughter, twelve years of heartaches, failures, triumphs, health problems, planning, working hard, trying to make his life as great as it could be. Happy Birthday to our amazing son. You are 12 now and we are so proud of every milestone you hit, and have learned to stop beating ourselves up over the ones you don't. We have grown just as much as you have. We are so thankful for the gift of you.

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