It seems it's much easier to just use that little thing to watch shows, check emails, and to stay connected. For some reason opening up this 'huge' computer has proven challenging!
I have been meaning to write, though, about so much. Every day I think, 'that is something to tell', or 'remember how that feels for the blog'. But then I get home and it all disappears.
Tonight, though, I am sitting on the floor looking at our Rowan and wondering about a couple of things. 1. I wonder if we have just gotten used to this diagnosis, or if we've accepted it finally- because I haven't cried about it in a while. That worries me, I think. I don't think I really want to accept it. Maybe I do. I don't know. I have noticed, though, that a lot of things have become routine in our house. I call the doctors several times a week or they call me. We check ketones with test strips and cotton balls. We make up ketogenic foods. We set up therapies, we get Rowan eye exams, we get his labs done, we order medication refills, we order special formula, we track mood, appetite, bowel movements, sleep patterns. We sign paperwork, meet workers, go to more appointments, get EEGs, upper GIs, chest X-rays, fax doctors, call doctors, have doctors speak with each other. And it's all become routine.
Scary how quickly that has happened.
2. I wonder about his eyes. Rowan's had a couple of visits from an eye specialist who is trying to determine whether he has Cortical Visual Impairment, or CVI. I think both Steve and I know he does. Some days he seems to see much better, but most days he doesn't track objects, has a difficult time focusing, doesn't have a flinch-reaction and seems to like gazing at lights. Children with CVI are also known to need more stimuli in other areas- and Rowan seems to really need a lot of movement. They're also more vocal... So I guess that's what's on my mind tonight. I think I'd just feel such relief to know he could see his sister and us. It really saddens me to imagine him not experiencing the world like we get to.
I wonder how he feels; on so much medication and being poked and prodded and measured and tested...I hope our sweet boy feels all of us loving him through it. I hope he knows that I carry his heart in my heart.
Here is a picture of Rowan on his 1st Birthday- What a handsome boy.
What a gorgeous family. Love you all, miss you! Most of all Happy Birthday to that handsome man! xoxox
ReplyDeleteI love that picture of Rowan's birthday. Life is so hard, but in that one moment there was celebration and love. And that includes all of us out here cheering you on. You guys are amazing. Sending lots of love.
ReplyDeleteI can't seem to stop thinking that if it's hard for him to see with his eyes, his heart is just that much bigger. I know, I know that perfect little fighting spirit knows how much you all love him.