I’m not sure where to go from here. It’s a place I’ve never been before and there are no directions on where to go next. “Take each day as they come” is the advice given to me, but I’m one that likes to prepare. What will I need? What tools should I make sure I’ve got? How do I prepare for tomorrow or tomorrow’s tomorrow? What are my coping mechanisms if everything falls apart? How do I put it back together again? Most importantly, how do I make sure things are WHOLE for my son. My son. My SON. Who, truly is, the centre of my universe.
Back in November of last year, we were given the news that Kiefer, our four year old bundle of joy and love, is autistic. It wasn’t shocking news. We weren’t blown out of our seats surprised at the news. We had him assessed. We obviously thought there could be something up when we signed him up for the ADOS testing. But until you hear those words. Until a doctor looks you in the face and says, “well, yes he has come back as being on the spectrum” you just have all these hopes and dreams as to what your child’s life will be like. And for us, for me, the hardest part is not knowing what the future holds for Kiefer.
“Well, we can’t really tell you what his future will look like. He is clearly high functioning right now, but sometimes those kids degenerate and become worse off. Sometimes they ‘outgrow it’, as much as you can outgrow autism”
I spent two months not talking about it. The odd question would come up and I would answer, well, we just got back a diagnosis – but I couldn’t even bring myself to say the word. Autism.
My head fills with thoughts like will he be teased in school? Will he be an outsider always wanting in with the other kids? Will he know he’s different? Will he be happy? Will he learn everything he needs to know? Will he go to high school? Will he go to college or university? Will he get married? Will he always need to live with us? Will that be a burden on us or will it be okay? Will his brothers see him as a burden? Will he be NORMAL?
There are no answers. The answers I get are ‘we don’t know’. No one knows. Just take each day as they come to you.
So the original future wedding I had all played out in my mind, Kiefer wearing a tuxedo and a figure of a woman all dressed in white, are dashed away. But there isn’t a scary image left in it’s place. The canvas is blank. Empty. Dark.
We fear the unknown. I fear it. I fear it for Kiefer. I want to gather him up in my big Momma arms with his “squeezy hug?” requests and his favorite books on animals and stuffy’s and protect him from the world that I’m terrified will hurt him. That I’m terrified will crush his easy go lucky, carefree happy spirit. The spirit that everyone loves so much about him. That I love about him.
I don’t know where to go from here. The only thing I do know is every journey begins with the first step. Please be gentle with us as our footing on this journey isn’t quite stable yet.
Hugs to you, and to all your boys. Your "normal" just took another sharp turn, and I'm sorry for your loss. We can never predict the future, but that doesn't stop us from dreaming about it, especially as parents. And even thought we can never know what our kids will and won't do, that doesn't stop us from grieving a bit when something happens that affects those dreams. I'm sorry you're having that grief and uncertainty now.
ReplyDeleteIt's impossible to say what Kiefer will and won't do, but truly, it's impossible to say that about all our kids. They will be happy. They will be sad. They'll make you proud, and make you crazy. They'll be each others best friends, and worst enemies. But through all of it, the one thing you CAN know is that they will have you loving them fiercely, proudly, and forever. That is within your control, it's both your path, and your coping mechanism.
(Or at least, that's what I keep telling myself, when I'm worried about the possible impacts of decisions I've made on my boys' futures. Sometimes it helps. And sometimes, I just need a good bottle of wine and some friends. Hugs and love!!!)
wow. reading this post brought me back to the time shortly after Audrey's diagnosis. very real and very raw.
ReplyDeleteI can assure you, that 2 years after her diagnosis, I could write a completely different post. And, I will bet big money that in 2 years you will be writing a completely different post.
Be kind to yourself and allow yourself to grieve and know that you wont always be grieving.
xoxoxoxo