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3 Things I Wish I Knew When I Thought ‘I Can’t Do This’ About My Son’s Rare Diagnosis

I have a vivid memory of driving to the hospital to have blood tests done on my tiny baby, Henry, and thinking to myself, I wish I could reset and start over.

I was thinking of how I used to reset my Super Mario Bros. game and start over from the beginning if things didn’t go perfectly right. I would hold down the A, B, “start” and “select” buttons and the screen would go blank, and then the Nintendo logo would appear as the game restarted like new. That is exactly what I wanted to do in that moment. I wanted to hold down some magical combination of keys, let the world go blank, go back a few weeks into the past and give birth to a Henry with exactly 46 chromosomes, no more, no less.

Those blood tests confirmed Henry has a tiny extra piece of chromosome 15, complicating his development, making him rare and special. My first child, Calvin, was born with 22q11.2 deletion syndrome, and all through my second pregnancy I believed this time there wouldn’t be a genetic anomaly. We had no reason to worry about another one. The news that Henry had dupq15 syndrome — a rarer syndrome with more profound developmental effects — was devastating.

The painful feelings that came along with Henry’s diagnosis were relentless.

Guilt insisted it was my fault, that I had doomed my child to a life of suffering.

Shame reminded me this world has little patience for those who are “different” — especially those who need extra help, who can’t keep up, who behave in “unusual” ways.

Fear kept asking anxious questions: What kind of life will this be? How will you possibly care for two children with extra needs?

And sadness could not stop crying over the life without complications that Henry would never have.

Slowly, I began to get past those painful feelings until I could see our rare and special Henry is a blessing exactly as he is. If I could go back to those early days when I was desperate to hit reset, I would tell myself three things:

1. It’s not a sob story.

The world led me to believe that raising a child with a disability was a “pity,” and that families of people with special needs were inspirational, because how could any person stand the challenges? I had internalized those sentiments to the point where I actually wanted people to feel sorry for us, because other people’s pity validated my own self-pity about raising two kids with special needs. I believed we were a sob story.

I was wrong.

Our life is not a sob story. People with disabilities are not pitiable. Everyone needs and deserves help, each in their own way, and more importantly, everyone needs and deserves belonging. We will have joys and sadness, challenges and triumphs just like any other family. We are special, and we are not special. To my past self, feeling like she will drown in sadness, I would say with passion: It’s not a sad life. It’s a good life. 

2. When you fear the future, or regret the past, focus on your child in this moment.

When the fears and worries of being Henry’s parent feel overwhelming, the one thing that can assure me things are all right after all is to look at Henry.

When I look at Henry, I see his abilities and his potential. I see how strong he’s gotten, how much he’s learned. Even in the midst of a meltdown, if I really stop and look at him, I will see my sweet child trying as hard as he can to cope with an overwhelming world. And that struggle, though it looks like a tantrum, reveals both his tenacity and his vulnerability.

In his own way, Henry shows me every day that he is going to be OK. When I fear for his future or wish I could rewrite his past, what I need most is to take a good look at him and let him pull me back into the present.

3. You may think you can’t do this, but you are already proving you can.

During my first pregnancy, my husband James and I took a birth class with a wonderful midwife named Jane who told the dads and birth partners something along these lines: “There may come a point in the labor when Mama starts to doubt herself and say, ‘I can’t do this.’ When she gets to that point, look at her and tell her, ‘You already are.'”

I’ve never considered myself to be terribly strong or capable. I did think I’d be a good mother, but when faced with the reality of parenting two children with special needs, my gut reaction was: I can’t do this.

But by the time I got Henry’s diagnosis, I was already getting him to his extra weight checks, getting his blood tests done, doing extra work to feed him and getting help from my midwife and lactation consultant — all on top of his usual newborn needs. I was already doing it.

I don’t know exactly what this parenting job description will entail in the future, but I know that so far, my husband and I have done our best. And that tells me we will continue doing the best we can, learning as we go, adapting as we need to.

woman wearing glasses and toddler boy
Diana and her son, Henry.

Follow this journey on Surprisingly Special.

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