The early days when you suspect something might be wrong with your child completely suck. Literally—the fear and worry sucks the life out of you to the point where you wonder if you have the strength to actually go on. But the day you hear the words, the actual diagnosis, is the worst day. It’s indescribably (though I’ll try) horrendous.
When we got the phone call that confirmed our daughter has a chromosomal disorder I was dumbstruck. I couldn’t make sense of what was happening. There was a loud ringing in my ears that made it hard to think. I fled outside and gasped for air. I couldn’t breathe. I eventually came back in and sat quietly on the couch beside my husband and we cried.
A few months later our daughter ended up in hospital which is a despicable story in itself (doctors are wonderful people, but they don’t always see what you see. When a medical professional tells you that it’s all in your head, listen to your gut and do what needs to be done.)
This is when further genetic testing revealed the extent of our child’s chromosomal deletion/duplication. The first few weeks with this new knowledge were spent in the hospital and the weight of the diagnosis was shouldered in part by the doctors and nurses and therapists around us. I was in denial and focussed on getting our baby eating and drinking and thriving again.
And we did. And they sent us home.
My husband and I spent countless nights tossing and turning. The worry and fear was beyond anything I had ever known.
I combed the internet for information. I searched for other families with children with a similar diagnosis. Maybe they could tell us what to expect. Perhaps they would say there is hope and that everything would be okay. I really needed to hear that.
I found a website called CDO. I joined the network of families there and received a print out with the contact information for other families whose child has/had a similar genetic profile. Though Avery’s particular disorder is unique, there were others who were similar.
I joined a Facebook group focussed on chromosome 3 disorders and I met Sarah. Sarah’s daughter was a little older than my child and had the closest deletion to Avery’s that I had come across at that point. I reached out to her with questions. So many questions. I poured over the photographs she posted of her child, looking for signs. She’s walking! She looks happy. Her mom is smiling. Any indication that their life was good, gave me hope.
I also found families whose child had died from complications resulting from their genetic disorder—the same disorder that was present in every cell of my baby’s body. Those were difficult days.
My husband would say, “Lisa, stop it. Quit reading all of that.”
But I wouldn’t stop. I needed to know everything I could. Amid the tragic stories, there was information about treatments and therapies and ways to help our daughter. So I couldn’t stop.
I kept reading and one day I met Amy. Amy’s son is a year younger than my daughter. They too share a similar deletion. Amy was and still is an incredible sounding board. We “like” each other’s Facebook posts about our kids and support each other through medical challenges and dark days. Though far away, Amy provides comfort. Just knowing she is there, feeling much of what I’m feeling, makes me feel less alone.
A sweet mama of a newly diagnosed child reached out for advice recently. Here’s what I want to tell her:
~It gets better.
~You are strong enough.
~It WILL be okay.
~This wasn’t your fault.
~You will laugh and feel carefree again.
~Early intervention will make a world of difference. Find a physical therapist, a speech therapist, an occupational therapist, a nutritionist…anybody who can help your child reach her full potential.
~Ask other parents with experience for information about funding. Therapies and equipment are expensive, so make sure you know what is covered by insurance and government funding.
~Find support for YOU. Sleep, eat well, exercise, breathe, go out with the girls, watch funny movies, read books that are NOT about special needs. I say that sheepishly because I didn’t take very good care of myself for a long time. I’m better now. Not perfect, but better. Don’t ever feel guilty about taking care of you.
~Grieve. Your child is different from what you had expected. It’s a loss. Acknowledge it so you can move on.
~Setbacks will happen. Even ten years later I have days where I feel angry or scared or just plain sad. Let yourself feel those things. It will pass.
~Treat your child like any other child. Don’t talk down to them. Try not to coddle. Set high expectations. Believe they can and they will.
~Know that life will never be completely “normal” but that’s okay. When you think about it, is any family completely free of challenges? Kids without special needs face bullying and health issues and mental illness and loss and depression and isolation and learning disabilities. Struggles exist for lots of families, not just ours.
~Keep your sense of humour.
~Some days you’ll feel intense jealousy and anger towards a mom and her “perfect” child at the grocery store. You’ll feel sorry for yourself and want to lash out. It’s okay. It’s normal. You’ll feel better the next day.
~Be prepared for stupid comments. People will make insensitive remarks. They don’t usually mean any harm, so cut them some slack or set them straight in a respectful but informative way.
~Find a Sarah or an Amy. Make friends (online and/or in real life) who get it.
~Doctors might tell you to expect the worst. Don’t. Well, prepare for it I guess, but imagine the best. We were told our daughter would never speak, that she would be autistic, and would likely never walk without an assistive device. Of course, we would have coped if these predictions had come true. However, they did not.
~Do internet research, but consider the information you find carefully and skeptically. There are no absolutes. Learn as much as you can, but take a break when it starts to freak you out. And it will.
~Talk to a financial planner with experience working with special families about your will, about insurance, about setting up a trust for your child. Let them help you. It’s boring and confusing and tedious but you’ll feel better once it’s done.
~Your other children will be okay. I honestly believe my son, Avery’s older brother, will grow up to be a more compassionate, kind, thoughtful, empathetic and loving person as a result of having a sibling with special needs.
~Share the responsibilities with your child’s other parent. You’re in this together. Make time for each other—you and your partner have more stress than the average couple. This can actually bring you closer if you consider yourselves a team.
Your child is special and they love you with all their heart.
They may not be “perfect” in the traditional sense, but wow, one look into their eyes and you’ll see true perfection. It’s been my experience that children with special needs have the sweetest hearts. They are pure love. I consider our daughter to be an absolute gift. I can’t imagine a world without her. I wish I could go back and tell that sobbing, terrified, angry, worried mother that her daughter is an absolute joy who will bring her so much pride and happiness. I wish I knew then what I know now.
It will get easier. Life will go on and it will be magnificent.