Friday, April 3, 2009

Can't Take That Away

Things have been good lately. Aside from the stupid fight C and I had the other night, which I think we're mainly over it now.. Just some stuff that needs to be talked about. Communication is key and whatever. Anyways, for the past few days C's baby sister has been staying with us, she's 16 (17 next month) so it's spring break and I guess she wanted to visit with her nephew. Can I just honestly say "aaaaaaaawkward". It was awkward for more than one reason. She's like 17 and a teenager, and I'm a rather private person when it comes to C's family. Yeah I know I post all my thoughts on the internet where everyone can see them, but when it comes to his family eh...

So that was weird, feeling like I had to bite my tongue at every comment because I know that if she casually mentions anything to her parents about anything that C's grandmother will be on the phone with him within a few days to discuss whatever I said or did. One time his aunt saw pictures he has posted on facebook, and called his grandma and she called him to tell him to remove his pictures and yeah, it's just a total annoyance. The point here is that they all gossip and it's a pain in the ass, so I was walking around pretending to be like completely normal never ever fights or raises her voice to her husband lady. It was like stepford wives over here. Now I have never seen that movie but I'm pretty sure it's about robots or something, and not the cool kind that shoot lasers out their eyes.

On to the other reason why it was awkward. Skyler was diagnosed on Monday as having hypoplasia and sent a referral to the institute for the blind. While I went and told my parents, C apparently decided to keep this info to himself, so for the whole time she was here she kept making comments about the baby looking at people and things.. I took C aside and I was like "Uhh did you not tell her he can't see?" and he pretty much just shrugged. I wasn't going to tel her because that's his family, I wasn't about to break the news to them. So on Thursday morning (his sister had been with us two days and was going home that night) we had his families first visitor over. So I had to explain to her what the doctor had said because she helps us with his development and I want her to know what's going on. So as I'm explaining it to her C's sister interjects with "So he's like colour blind then?" I turn and I'm like "No, more like legally blind.." and then "Oh." and that was that, but I found it kind of amusing.

Then at his parents house for dinner that night his dad was playing with Skyler and talking to him and all that stuff grandparents do, and he says "You don't look at the person holding you." then he's playing some more and turning him around and then he says "What are you blind?" and C and I both say "Yes." in unison without any hesitation, in a completely matter-of-fact voice. He seemed to accept that, and was actually pretty good with it. I was surprised there weren't any follow up questions. He just kept playing with the baby and made some jokes about him not seeing his "ugly auntie's face" or you know whatever insulting thing he said about his daughter. I kid you not.

OK on to the good stuff! Today I had to take care of N at her grandma's house because they're selling their house and there are showings there. So as C drove me to work I noticed that the CNIB was basically a block away from N's grandma's place. So after work C and I drove over there and managed to catch the Early Intervention Occupational Therapist. She said that there used to be two of them doing the program but the other lady left and now it's just her, and her caseload is huge and there is a giant waiting list. But she was very receptive and took us to the "kids korner". (a room down the hall with a whole bunch of baby/developmental toys) She spent an entire hour talking to us, and she even evaluated Skyler. He put on the baby charm and she decided to take him on immediately.

She answered so many questions and was just awesome. She told us we were doing all the right things so far with him. She is going to help us stimulate whatever vision he does have, and she will be able to evaluate his development in conjunction with his vision problems. It was a good thing we went in too because she said that just this week they implemented a new system where every new person who is referred to them gets their file sent off to Edmonton and then gets a call from Edmonton to answer a few questions and then the file gets sent back to Manitoba and then they get in touch with you. So she was saying that with as many people as there are coming in that it's likely they're getting lost in the pile and not even getting called back.

Our letter just arrived at the CNIB and at our place today. (The opthomologist sent a letter to us and the CNIB and the endocrinologist and his NP) So we got lucky, she managed to dig it out and made us an appointment for the end of the month. I'm so excited. She told us that most of the other kids in the Early Intervention program have hypoplasia as well and that only one of them is totally blind. The others all have varying degrees of vision, some of them even manage to ride their bikes to school, and play video games and do all sorts of stuff. She was very supportive and enthusiatic. She (like every other doctor/specialist/therapist we've seen) said that Skyler is very lucky to have parents who are so involved and want to help him in every way we can.

Anyway I came out there feeling pretty good, and very happy that I had decided to make an impromptu visit to the CNIB. It was lucky that we caught her, and managed to get an appointment, she seems very excited about working with Skyler. She couldn't get over how cute he was either. Eh but who can?

Okay, so yeah it may seem kind of insane, for someone who just found out for sure that her baby is legally blind, I'm pretty happy. I have a good clear concise idea of how to help his development, I know he has certain limitations, and I am ready and able to work with them. It's all going to be great.

I love my baby, and I am so happy he is here and alive and such a happy baby. No matter how many people are "so sorry he's blind." They can't take that happiness away from me.


Karen said...

Well I for one am not sorry for you. I'm jealous. I keep looking at his picure thinking how I just want to hold him. Seriously, though. You are so very lucky to have him, and so lucky to have found some great people to guide you all through the process of giving him what he needs to thrive.

Verna said...

I once heard a statement that someone said "God, only gives children with special needs to special parents".
You are special and So is he!

Taking it Day by Day like your blog Title, Is all any of us can do.

Stacie said...

Oy. That sounded rough. I don't do well with space invaders either. Not my cup of tea unless it's something I am very close to and comfortable around.

Sounds like you did well with all things considered.

Amy said...

Skyler is blessed to have you as a mom.