The Blind Leading...

The past week was great. Ollie is doing really well and only had to go to hospital once this week for bloodwork and a check up. He's still showing no signs of Graft Versus Host Disease, his blood counts are high and stable and his chimerism test remains at 100%! The rest of the week we've been playing, walking, doing physio exercises, resting and reconnecting. 

Abby is happily getting settled in Ottawa with dear friends who are treating her like their own. She goes with them to our house daily to feed and love up the cats and spend a bit of time at home. Her online classes don't start until September 18 now so she's been getting her haircut, seeing doctors and generally getting caught up on her own needs. We are grateful to her surrogate family for their love and support.

Today I really want to talk about his blindness. Blindness is considered a disability. I really hate that word. Some people think that blindness is a terrible thing. Debilitating. They're horrified at the idea that Oliver is now blind after being sighted. I prefer to think that Ollie is now especially abled. That his blindness has given him other super powers. 

From the very outset of his blindness (that was a side-effect of the lymphoma in his cerebral spinal fluid last January) Mario and I didn't see it as the end of the world. We sat in a room full of experts who told us they didn't know if he'd ever recover any of his vision or not and we looked at each other and said, "He'll still have a great life WHEN we save his life." Then we asked the doctors, "So what's next to kick out the lymphoma and save him?" 

I know from other dear friends who have special children with different needs and abilities that they felt this way, too. That they needed to acknowledge that their child was exactly as he or she was supposed to be and may have challenges as a result, but none that would be insurmountable. That their children are still able to be the loving gifts that they were intended to be.

We've worked really hard to encourage Oliver to appreciate that being blind is not the end of his world, but just a change in his world. That he can still see, he just uses his other senses and input from people around him to paint the picture in his brain now. That it's something that he can adapt to. Something that he can learn to live with and overcome the difficulties of. These last 7 months we've encouraged him to try things and focus on what he CAN still do to get him to a point of acceptance. 

I've had several people forget that he is blind and either send him photos to look at, suggest he might like certain games or toys while in hospital, etc. When they realize, they're all very embarrassed and apologetic. I always tell them not to worry as we sometimes forget, too. It's still new and we're all adapting. Mario, Abby and I are learning to be better explainers and describers. Using more descriptive words when telling Ollie about something he can't see. Trying to remember not to say things like, "Ollie I wish you could see this!", but instead describing to him excitedly what we do see so he can picture it, too. 

We're also encouraging him not to have a chip on his shoulder about his "disability" so that people don't treat him differently in a way he'd dislike. We're trying to make him honest, but matter of fact about how he feels about and deals with it. He tells people frequently that he's legally blind. It's funny because so many educated adults don't know what to say to that.

He also realizes that in spite of his blindness he can do just about anything he sets his mind to, and daily he shows us that this is absolutely the case. So it's awe-inspiring for me to watch a person who has been sighted and is now blind try to navigate the world around them. They have context. They have an idea of what things look like, what their texture and shape is. They get the concepts of size and they understand colour. They have all kinds of frames of reference that a person who is born blind doesn't have. So in some respects that makes a person who was sighted and becomes blind perhaps more advantaged. This was explained to us by the Vision Itinerant team at the school board as well. 

He's leading us and teaching us so much. When we were in hospital, Ollie wrote my mom a letter on his own. I only helped a bit to help him space out his lines of text. My mom has been so touched at the fact that he would actually sit down and write her a letter when he can't even see what he is writing. That's determination. He has an abundance of it and that's one of the many reasons why we won't let him feel sorry for himself. 

So we won't accept it when people seem to think that blindness is the worst thing for him and that we should keep trying to fix it. We have been told by experts that his optic nerves are severely and irreparably damaged. Of course we are hopeful that in future as Ollie ages and technology evolves he may be able to recover some of that vision. We're hopeful that one day he may be able to have an implant much like a cochlear implant that will enable him to see forms and shapes. Perhaps a bit of light. Things that will assist him in his daily life and make things a little less challenging for him, but in the meantime we're really glad that he has learned that he is totally capable of doing just about anything that he sets his mind to. 

I always find it very funny that when he gets mad, one of the first things he wants to do is stomp off by himself. He doesn't let the fact that he's blind or doesn't know where he is stop him at all. He puts his hands out, steps forward confidently and he's ready to go. You can be certain that attitude will take him very far in life...already has in fact because he's stl with us against all of the odds. 

There are still lots of things I don't understand yet. Like how he'll re-learn to do certain things like walk with a cane, find clothes that match, find a missing shoe, move without fear of hurting himself. I know he'll learn them all and so much more, it's just mind boggling sometimes to think abouthow much he'll still have to overcome and learn. He's now been assigned his new vision itinerant teacher and I can't wait to hear more about how they're going to help us to help him to learn in school, but also other important and practical life skills.

We restarted his Braille lessons with oh so patient Leona this week. He was reluctant and a bit difficult at first, but quickly showed us that his beautiful brain retained all 17 letters that he now knows of the Braille alphabet. 

I got a letter in the mail from Canada Revenue Agency telling me that I will now get the child disability credit and that he's also eligible for the Registered Disability Savings Plan. So I spend many hours in a day right now learning about resources that will help to secure my son's physical and financial future. Because now it's more important than ever that we set him up for success for the rest of his life. He's fought so hard to HAVE a rest of his life and we want it to be long and comfortable.