I never thought I would be able to consider the possibility, but I’m finding out that it may be possible to cure my son’s condition. My son has a form of dwarfism. His condition doesn’t mean that he is ill. It doesn’t hinder friendships and of ability to have fun. He’s just small. That’s it. And I couldn’t be more proud to be his mom. He’s shown me that perfection comes in all shapes and sizes.
Perhaps if I found out about this plausible cure when he was diagnosed, I would feel differently. Maybe, but I even find that hard to believe. I might sound like a strange horrible person. Who wouldn’t want to cure their child’s condition? A condition that has made the first four years of his life tough. But I’m his mom, and being little is part of who he is. And I love him for it.
The medical community is amazing. Because of their efforts, my son has thrived. He’s been watched over closely to ensure that he is the healthiest and happiest possible. And now they have come up with a drug that could make his bones grow. It would not only have the chance to increase his size, but it could also alleviate the countless complications that come with dwarfism.
But I’m still afraid.
I’m scared to lose the little boy that I love more than words can say. The idea that I’m changing him by choice frightens me. If I give my son this drug, I’m taking away his essence. His short stature is one of his beloved traits that I love. And from this, he’s developed so many other amazing traits. He’s learned perseverance and patience. He is outgoing and freakishly loud. Sometimes our seemingly worst trait is actually the stepping stone to our greatness, and I am afraid to risk taking that away from my son.
I’ve always felt that my job as a mother is to teach my kids how to love themselves—to celebrate what makes them unique and special. And already our world is full of “fixes” designed to “improve.” There are hair dyes, teeth whitening procedures, extreme diets, wrinkle creams, Botox, and on and on. Instead of loving ourselves, we’re constantly looking to fix “problems.” Yet in the midst of these products, we are flooded with the message to love ourselves while also getting bombarded with images of perfect people. This is confusing and beyond frustrating. And it makes my job to teach self acceptance a bigger challenge. And now that I have a son who is different, I’m even more adamant about my job to teach self-love. Why can’t we love ourselves and each other for our differences?
Diversity is where the most beautiful and amazing are found. I never would have thought to ask for a child with dwarfism, but I also can’t bear the thought of changing it. My son is perfect. His physical size is small, but his personality is larger than life. And he’s gorgeous. His eyes are bright blue, and his smile is the most contagious I have ever seen. Why would I change this? Why take something extraordinary and make it plain and ordinary?
And yet, this cure is still an alluring thought. My son has endured countless tests, procedures, and appointments. A cure would enable him to reach the sink in the bathroom. He’d be able to ride a bike without multiple adaptations. The world would be within reach. Literally! Stairs, light switches, doors, chairs, beds, toilets, cars, and on and on. Ear surgeries, leg surgeries, spinal compression, hydrocephalus—these complications could be history—never to worry about again. Why would I keep my son from this chance of health?
If the drug is offered to my son, I’m playing God. My fears resurface. There are good intentions behind this treatment. But as he grows up, what will he think? He may love me for it. But deep down would he come to realize that I rejected who he was? Surely he would. Or worse, would he despise me for not giving him the treatment? This is a decision that I’m lucky to have; I know that there are families who would give anything to be in my shoes. But if those shoes go on my feet, I’m terrified. This is a huge decision.
Thankfully time is on my side. My son is only 4. The drug is still in clinical trials.
I have time—time to educate, time to watch, time to wait. Maybe I’ll have to make this decision. And if I do, I’ll struggle. But I’ll also know how lucky I am to wear these shoes.