I have a vivid memory of driving to the hospital to have additional 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 Brothers gameboy game and start all 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. And that is exactly what I wanted to do in that moment. I wanted to hold down that 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 got sent to the Mayo clinic to confirm that Henry has a tiny extra piece of his 15th chromosome floating around in about 65% of his cells: complicating his development, making him rare, and unusual, and special. I didn’t want Henry to be rare and unusual and special. I wanted desperately for Henry to be normal.
My first child, Calvin, was born with 22q deletion syndrome – missing a tiny piece of his 22nd chromosome. And all through my second pregnancy I believed fiercely that my second born would be normal. It was unthinkable that lightning could strike our family twice. We had no reason to worry about another genetic anomaly. The news that Henry had Dup15q syndrome – not only another genetic anomaly, but a rarer syndrome with more profound developmental effects – was devastating.
The painful feelings that came along with Henry’s diagnosis were relentless.
Guilt insisted that it was my fault. That I had somehow doomed my child to a life of suffering.
Shame reminded me that 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 and unacceptable ways.
Fear kept asking anxious questions: what if he never walks? what if he never talks? what kind of life will this be? what about Calvin? how will you possibly care for two children with so many extra needs???
And Sadness could not stop crying over the imaginary normal child that Henry would never be, and that I would never have.
Those painful feelings wreaked havoc on my already unbalanced postpartum mind and body.
I wish I could say that I woke up one day and the sun shone on me and my beautiful boy and I realized that everything would be all right and we all lived happily ever after.
But the truth is, it continues to be a long, slow journey of learning to let go of Guilt, Shame, and Fear. Learning to hold the Sadness and balance it with Joy. Learning to work hard in ways I never thought I was capable of. Learning to ask for help and accept support. And discovering that our rare, unusual, and special Henry is a blessing exactly as he is.
We are still at the beginning of that journey. But already I am starting to see things that I could not see through the blinding pain when we got Henry’s diagnosis of Dup15q. If I could send myself a message to read in those early days when I was desperate to hit reset, I would tell myself 3 things:
1. It’s not a sob story.
In a million little ways, the world I lived in had led me to believe that raising a child with a disability was a pity. That children and adults with disabilities were poor things who would always be missing out because they’d never be able to do all the things that fully capable, non-disabled people could do. And that families and caregivers of those children and adults with extra needs were inspirational, because how could any normal person stand the burden. 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 that we were a sob story.
I was wrong.
I was wrong!!!
We are not a sob story. Our life is not a sob story. People with disabilities are not pitiable or burdens. Different is not less. Everyone needs and deserves help, each in their own way, and more importantly, everyone needs and deserves belonging. Our family may be unusual, but 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 for the future, or wish to change the past, look at Henry and focus on the present.
I actually learned this lesson early on, but I would go back and tell it to myself in the very beginning just to reassure myself that it is true and powerful: When the fears and worries of being Henry’s parent feel overwhelming, the one thing that can assure me that things are all right after all, is to look at Henry.
When I look at Henry, I see his energy, his smile and bright eyes. I see his abilities. 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. He shows me that he is learning, that he is growing, that he feels joy, frustration, curiosity, longing, satisfaction, glee, sadness, and all the other human emotions in-between. He shows me how capable he is. He shows me his potential. When I fear for Henry’s 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 doing it.
During my first pregnancy, James and I took a birth class with a wonderful midwife, yogi, childbirth and pregnancy guru named Jane. During one of our sessions, Jane told the dads and birth partners something along these lines: There may come a point in the labor when Mama starts to doubt herself. She may start telling you “I can’t do this.” And when she gets to that point, you look at her and tell her, “You already are.”
I have 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 my kids’ diagnoses, I was already doing it. When I got Henry’s diagnosis, I was already getting him to his extra weight checks, getting his blood tests done, showing up for appointments, doing extra work to feed him and getting help from my midwife and lactation consultant… all on top of taking care of his usual newborn needs. I was already being Henry’s mother.
I don’t know exactly what this parenting job description will entail in the future, but I know that so far, all along James and I have done our best. And that tells me that we will continue doing the best we can, learning as we go, adapting as we need to. So whenever I feel that self-doubt like I did in Henry’s newborn days, I will tell myself: Don’t be afraid that you can’t do it. You are already proving that you can.
Getting an unexpected diagnosis for your child can shake your whole world apart. It takes time to find peace with a new reality. Perspective changes over time as you and your child learn and grow.
To parents like me stumbling though unexpectedly special parenting, I hope these things I would have told myself may also help you.
And to special needs parents who are farther along your journey, what advice would you add?
On the 15th of each month I will dedicate a post to raising awareness for Henry’s special syndrome: Dup15q. For more about Dup15q and how it has affected Henry’s development, check out our page Henry & Dup15q. For more information about Dup15q syndrome, check out the Dup15q Alliance at Dup15q.org.
The Dup15q Alliance provides family support and promotes research and treatments for individuals with Dup15q syndrome. In February, Rare Disease Month, the Dup15q Alliance sets a goal of raising $15,000 in 15 days, starting on Valentine’s Day and ending on Rare Disease Day, February 29th. If you have any interest in contributing, check out the fundraising event page on the Dup15q Alliance website here: $15,000 in 15 Days for Dup15q. Thanks to everyone contributing to this cause!