My husband gave me a tacky beer cozy—you know those foamy cups that insulate your bottle? “This is not the life I ordered!” was written across it in neon letters. It was a silly gag gift for an occasion I can no longer recall.
When our daughter was diagnosed with the genetic disorder that would change all of our lives, I dragged out the beer cozy from a box in the basement and announced that I would be using it to hold all future beverages.
When our daughter was four months old we had concerns. This baby, our second child, wasn’t gaining weight, she refused to nurse or drink from a bottle, and she wasn’t achieving the milestones associated with her age. By six months we were worried. By seven months we were frantic.
Our family doctor (the only medical professional who actually listened to us), was at a loss. She ordered the necessary genetic testing, and in the meantime referred us to a pediatrician who I took Avery to see several times. On the last visit, near tears, I begged him to take our concerns seriously. My husband and I knew something wasn’t right.
His response to my plea for help was a casual, “You just need to relax.” He asked if this was my first child. Followed by, “Women have been feeding their babies for thousands of years. She’ll be fine.”
We never went back to see him again after that.
Instead we went to another pediatrician whose advice was ridiculous and downright negligent. After explaining to her that Avery was losing weight and that her urine had an unusual odour, this doctor suggested feeding her high calorie foods like cheesecake and crème brulee.
Seriously? I reminded her that my baby refused food. ALL food. And she suggested I give my starving child dessert?
She told me to give it a week and we would “wait and see.” Wait and see if she would lose even more weight? Collapse? Die? What exactly were we waiting for??
I did not wait and see.
Instead I took Avery straight from “dessert doctor’s” office to Sick Kids Hospital emergency. They examined Avery and found she had a severe urinary tract infection, was dehydrated, and “failure to thrive.” The doctor shook his head and admonished, “This child should have been here a long time ago.”
They admitted her and said they would figure out what was going on.
I cried my eyes out in frustration and relief. Finally somebody was going to help us.
When the genetics results came back we learned about Avery’s faulty DNA. Her condition is rare so they couldn’t tell us what the future held, but the geneticist suggested we focus on giving our daughter the best care possible to maximize her potential.
So that’s what we did. It’s what we’re still doing.
As time goes on we continue to discover more about the challenges involved with this chromosomal deletion/duplication disorder, but we’re also learning lessons about resilience, determination, and the power of positivity and humour.
This may not be the life I ordered, but it’s good. It’s really good.
If you’re a parent at “the beginning” of all this, you already know how rough it is at first. It feels dark and scary and lonely and incredibly sad.
But then in time, it’s not.
Your world will brighten. You’ll adjust your expectations and discover how amazing your child really is. You’ll feel grateful. You’ll laugh. You’ll sleep through the night. You’ll find your sparkle. You’ll wonder what you ever did to deserve such a beautiful family.
I’m absolutely serious. I can’t imagine my life any other way.
I’m a special needs parent. Like you, I feel hopeless and hopeful and fearful and grateful. But isn’t that the same for all parents? This may not be the life we ordered, but it will be okay.