A Mormon family in Utah has been putting their son’s journey of a terminal form of Muscular Dystrophy. The boy, Mitchell, was doing great. But quickly his position changed and they found that his disease was killing his heart and fast. While working on getting an LVAD, they documented his last few weeks, and ultimately his last few days and hours. His father documented the journey in amazing and heart wrenching photographs. What I wonder, was how this mother was and did, raise her child knowing and teaching him about dying? How did she do it with strength and dignity? Of course, I wasn’t there behind closed doors, but the questions still looms, how do you raise your child to die?
Today we had an opthamologist visit for Tyler. We truly do love our eye care team and Tyler, especially, LOVES his vision therapist and teacher at school. He calls her Jenny the Pirate. We had a terrible, TERRIBLE visit with an optometrist ( there really is a HUGE difference) a few weeks ago but we knew that we just needed it for a few things at school. But this doctor, Dr. S, is different. He is a retina specialist. He deals with ROP and kids like Tyler. He is very good and very through. He is also very bold and very honest. He never sugar coats things and we are able to get good information for what we need.
Tyler hit a growth spurt the last few months. He really has put on some weight, and grew bigger. While that is a blessing for us, it has wrecked some havoc on his body and his conditions. One thing I didn’t expect was that his eyes would be affected by him growing. This recent growth spurt has caused him to become more near sighted. We knew that as he got older that he would have a harder time seeing. But I thought when he was 18 or 19 or older. Not 7 or 8 or even 50. The reality is, I never thought he really would get “worse.”
His script went from -13 to -16 in a year. Correction doesn’t correct his vision to even legally blind. He is amazing at compensating and he has great “functional vision.” We have done all that we have known to do to keep him seeing. We make sure that his ability to get what he needs is done. But we do not know how to stop or slow down the progress of his ROP and his nearsightedness
(This is what 20/500 vision is. Tyler has this picture WHEN CORRECTED!! So WITH GLASSES)!For Tyler, we still see the opthamalogist every 3-4 months. They are still worried about his retina’s detaching and him going totally blind. The older he gets, the better he will be at telling us that something is wrong with his eyes but ultimately it will be with the follow ups that we catch it as early as possible.
What hit me hard, was how do you raise a child to become an adult that will not be able to see? How do you teach him about all the wonderful things that there are in the world, yet he sees none of them? We are teaching him a song about all of the wonderful things that Heavenly Father has given to us, yet he is denied seeing them?
For today, I am sad. Today I look at photographs taken from amazing people, who see and takes photos of amazing things. I want to pack them all into a short time so that Ty can see EVERYTHING. Experience everything. Even with the limitation physically, I want him to see everything he can. I don’t want him to lose what vision he has.
How will I raise my sweet, amazing, miracle to grow up blind?