Recently, an on-line friend’s son, who is around 18-months-old, was diagnosed with Fragile X Syndrome, which is believed to be one of the primary genetic components of autism (about 10% of ASD children have Down Syndrome, Fragile X Syndrome, or some other genetic/chromosomal disorders). My friend is struggling with how to deal with the diagnosis, much as I did with Simon (and still do, honestly). Today, as I was writing to her my thoughts, I realized that I was writing to myself as much as I was writing to her. I was writing what I needed to hear, as well as what I thought would help her. So, I’m going to share it here as well:
This is hard. It’s incredibly hard. Your heart will break constantly. You will cry and scream regularly, because this shit isn’t fair. You are being forced to change your vision of the life you wanted for your child and it fucking sucks. You will have moments where you resent parents with typical children, and even the children themselves, and then you’ll hate yourself for feeling that way. You’ll have moments where you just want to scream ‘why did this happen to MY child?’. You are going to feel angry and guilty and sad, and you’ll feel that way a lot. And that’s okay.
But there will also be moments of incredible joy. Milestones that aren’t that big of a deal to the parent of a typical child are going to be HUGE for you, because you know how hard he had to work to get there. When he takes his first step, you are going to feel like he climbed to the fucking moon, because that step was so hard fought for. It’s all going mean so much more to you. Even just little things like trying a new food or not crying at the touch of something he dislikes will make you dance for joy. The first word, the first ‘I love you’ are going to be fucking huge.
And you’ll find a way to deal with it all; all of the hurt and heartbreak and financial stress and scheduling and therapies and tears and laughter. You’ll find a way. You’ll deal with it all, sometimes grudgingly, because you have to. It’s not easy, it’s not fair, but this is your life now. His life now.
You’ll deal with it all because you love him. Because he is yours and you are his.