We love Matthew beyond measure. We know we have a LOT to be thankful for, so it makes the thoughts below seem even more wrong, but I can't deny that some moments are a bit darker than others.
For the last several months, I have had a renewed sense of mourning about Matthew's diagnosis. I'm a little embarrassed to admit it as I thought I was over the mourning. Matthew made it past his first year, and the scary stuff became but a speck in the rear view mirror. With that, I stopped mourning. And then this last Fall, it hit me again. I've again taken to crying in the shower and tearing up at random thoughts. I thought I was over landing in Holland, but I guess I'm not. Thankfully, I feel like I'm once again coming out of it, so I feel like I can finally write about it.
With Matthew being one of a kind (literally), I said we had no idea what to expect with him. Even though I said that, I think I expected by the time he was 4, he would be a pretty typical kid, maybe a bit delayed, but doing all the things a typical 4 year old does. Though there are lots of ways he is similar (walking, riding a trike, eating, etc), it is becoming more and more apparent this is not the case. He prefers toys well beneath his age group. He still has temper tantrums where he is inconsolable. We are still changing diapers. He still doesn't talk.
As well, I always envisioned him mainstreamed in school. Though that may happen, I am beginning to think it will only be possible with a large helping of special education services. Imagine how different your schooling (or that of your child) would be if you couldn't talk. Because he doesn't talk, we often assume he doesn't know something, when in fact, we just don't know how to get the information from him. He is going to challenge his teachers, his aides and us.
I think one of the reasons I envisioned him mainstreamed was because I didn't want to see him as 'special needs'. But that is what he is, how he will be perceived, and (some days) even how I see him. It is beyond the uniquenesses I've written about so many times (lack of thumbs, asymmetric ears, etc). Some days I'm so very sad how 'special' he appears. It is his 'crazy eyes'. He can make his eyes turn together and back and he does this at random times. Every time I catch it on film, I erase the picture immediately. I am coming to the realization that I can erase it from my camera, but it doesn't erase the fact that he does it. At the park, he will make shrieking noises no one else makes. Kids who don't know him stare. His shirt is sometimes wet with drool. He freaks out at the library because I won't let him on the computer, so he pulls rows of books off the shelf. He is that kid. Some moments, I'm embarrassed he's the special needs kid and then I feel horrible because I'm embarrassed.
I don't know if Matthew knows he's different. He doesn't seem to recognize that his hands only have 4 fingers while every one else's hands have 5. He isn't phased when he says things that no one else understands. He is just a happy, happy kid. We always say that 'every day is a good day for Matthew.' For that, we are very thankful, but even that isn't typical.
And, oh, the irony. When we decided to have baby number 3 (nicknamed 'Tres' before he was born), we decided to time his birth earlier than our original plans because of a trip to Disney World. On that trip, there were two 8 year olds, two 5 year old, a 3 and a half year (Alyssa) old and a 2 year old (Jackson). The difference between the 8 year olds and our kids seemed huge. Our kids wanted to see shows and meet characters while the 8 year olds wanted to ride the rides. Darren and I wanted to avoid 'having every day be our Disney World' by having 'Tres' a bit closer in age to Alyssa and Jackson, but, with Matthew, every day is our Disney World. I hope that will change, but I fear it will always be the case.
We landed in Holland when we were supposed to land in Italy. It's not all bright and shiny, but my hope is that the bright, shiny moments, to which there are many, keep overpowering the darker, sadder ones.