Tuesday, March 17, 2009

Baby You're Not Lost

I've had my cry I've accepted it, if he is blind then he is blind, and well if his eye muscles are taking their time to develop well then fantastic! I'm leaving the issue alone until I get an actual diagnosis from the opthmaologist. And in the meantime I am doing my very best to stimulate those eye muscles. We think he may have been focusing a bit yesterday on one of his toys, he was smiling and it looked like he was looking at it. So yes I am holding out a bit of hope that his eye muscles are just slow to develop or that he has some low grade amount of sight. I'll be happy with whatever I get, even if he is blind we will adapt.

I'm not dwelling on it or worrying about it, I called his NP yesterday and just made sure of the appointments and asked her about the de Morsier's syndrome, she said the neurologist and opthamologist will have to make that call, which I knew. So I'm leaving it at that. He is my son regardless of anything, and he hasn't changed, he is the same baby he was before I realized he wasn't seeing much of anything. He is still himself regardless, and I love him exactly the same as before.

We're scheduled to the enth degree which is crazy because I have never had this many appointments and groups to go to in my life. You'd think I'd be burned out, but I'm actually taking it in stride, C and I seem to have united against everything and are doing very well. We had our first home visit from the Families First home visitor, I loved it. She's only a year older than C and I, and as we were chatting I mentioned that C was from the country (I've always been a city slicker) and she asked where, he told her the small town he grew up in. What do you know that's where she's from too. C told her he knew she looked familiar, and they launched into a discussion about people from their hometown and all that. It was awesome. She said the first visit is just to get to know each other. We had a great time and laughed a lot. She explained a bit about what they do, and we talked about Skyler.

It turns out she even has the same degree I'm going for. She told me how much she used to make when she worked at a daycare. Not bad cash I must say.. She said with my ECE I could do the same job she is doing, and she mentioned that she makes a fair bit of money. She also told me I could work at a daycare and take my ECE at the same time and the government will pay for my schooling. All good stuff to know. I'm quite excited about the families first program. I think it will be good, we were comfortable with her, and vice versa.

Last night we did an intense spring cleaning. While I was at work C took everything out of our bedroom, including an insane amount of clothes (he emptied all 3 closets and we own a LOT of clothes). He washed all the laundry and we went through all the clothes and made three big garbage bags full of clothes for charity. We cleaned out so much junk and rearranged all the furniture in our bedroom. I must say it looks gigantic now. I mean it's a huge room, but the way the furniture is laid out now it looks very spacious. I love it. The bed and the crib are across from each other, and right by the window and ah it just feels so much nicer. We cleaned out the living room too. Just the kitchen now needs a bit of tidying.

It feels great now that it's all done, but man was it exhausting. I came home from working all day with baby and had to sort through and fold and hang the biggest mountain of laundry I had ever seen, and I took out 3 bags of garbage to the bin outside. We were up until about 2am, and then of course shortly after going to bed Skyler woke up with gas pains. We made it through the night and didn't even get frustrated with each other in the slightest. Which when you're completely drained is quite the feat.

I thought I would be freaking out and whatnot, which believe me I did my fair share of freaking out the other day, but I feel pretty good actually. We're so well connected within the community that I have no doubt that we will be able to work with whatever we're up against with Skyler's development, and that we will be able to provide for him whatever he needs. I mean I basically have to accept that it's out of my hands. My child is who he is and whatever issues he has we will just learn how to work with them.

When you feel like you're done
And the darkness has won
Baby you're not lost

~Michael Bublé


Never Clever said...

I have said it before, but I admire your strength and courage. You're right, Skyler is no different regardless of any diagnosis he may receive.

Yay for Spring cleaning!

Karen said...

"He is my son regardless of anything, and he hasn't changed, he is the same baby he was before I realized he wasn't seeing much of anything. He is still himself regardless, and I love him exactly the same as before." Sometimes, that's so hard to see, but it is the absolute truth. Love is the most powerful defense against all that life throws at you.

Amy said...

It sounds like your in a good place mentally about all of this. Keep us posted.

Becky said...

I can't find your email address in my address book and I can't find a link to email you. So email me! Cinderella20032@aol.com

We had Lily's Early Intervention come today for the same thing. I'll blog about it, but probably not until tomorrow because I need some time to proccess. It was good, I think. Not perfect, but good.

Anyway...I truly think that his eye's are just slow to develop. We used to do the same things for Lily when she would just stare at the TV, the computer screen, or look in the other direction. We'd stare at her hoping for something...anything. The thought that your child could be blind is terrifying. I'm glad that you had time to step aside for a bit, take a deep breath, and see things for what they are. I'm still struggling with that sometimes. Is he going to see the Pediatric Opthamologist? Ours was incredible with Lily. From the exam, he could see that she wasn't blind but her eyesight wasn't perfect. 20/40 he said. I don't know much about eyesight because I don't wear glasses, but they will be able to tell you from there. He said that 50% of children with Nystagmus (regardless of the overall cause) need glasses before school-age and the other 50% needs them around age 7 or so. When we asked what we could do to stimulate her, he said to google Visual Stim. We also printed out big letters in black on white paper to show her. He also said that if she liked to look at TV and computer screens to let her because at least she's looking at something. So when Skyler 'watches' his shows, celebrate because he's watching something. He's seeing something. So if it's shadows or colors or blurry...he's still seeing.

(((hugs))) My heart goes to you. I wish that we lived closer because I could use the support and I'm sure that you could too. Please email me when you get the chance. I know that your super busy, but know that you aren't alone.

Becky said...

Oh...but the thing with Nystagmus, again regardless of the overall cause, is that even though the wobble gets better over time, the eyesight doesn't improve and does get worse.

She said...

You're doing so much better than you think you are. As hard as it is, just keep taking one day at a time and you'll make it through whatever challenges are ahead.

Anonymous said...

well put. there are some people who could learn from you. I am as always hoping for the best!! and will make sure to check in more often...keep that chin up!