Updated: May 11, 2023
Originally Published: May 11, 2023
I never imagined I would find myself contemplating a treatment for my son’s condition. My son lives with a type of dwarfism. It’s important to clarify that this condition doesn’t mean he is unwell, nor does it inhibit his ability to form friendships or enjoy life. He is simply smaller in stature. And honestly, I couldn’t be prouder of being his mom. He has taught me that true perfection comes in a variety of forms.
If I had learned about this potential treatment at the time of his diagnosis, my feelings might be different. Perhaps, but I find that hard to believe. It may sound strange, or even selfish, but who wouldn’t want to alleviate their child’s struggles? A condition that’s made the first few years of his life more challenging? Yet, as his mother, I understand that being petite is an integral part of his identity, and I cherish him for it.
“I never would have thought to ask for a child with dwarfism, but I also can’t bear the thought of changing it.”
The medical community has performed wonders. Thanks to their dedication, my son has flourished. He has been monitored closely to ensure he remains as healthy and happy as possible. Recently, they introduced a drug that could potentially stimulate bone growth. This could not only enhance his physical size but also reduce the numerous complications associated with dwarfism.
Still, I am filled with trepidation.
I fear losing the little boy I adore beyond words. The thought of altering him by choice terrifies me. If I opt for this treatment, am I not diminishing his essence? His small stature is one of his most endearing qualities, and it has shaped him into a remarkable individual. He has cultivated resilience and patience, and he is vibrant and incredibly outgoing. Sometimes, what we perceive as flaws can be the catalysts for greatness, and I am reluctant to risk taking that away from him.
As a mother, I feel it is my responsibility to guide my children toward self-acceptance—celebrating what makes them unique. Today’s world is saturated with “fixes” that claim to enhance our appearance or abilities. From hair dyes to teeth whitening, extreme diets to Botox, we are constantly bombarded with messages that suggest we need to change who we are. It can be confusing and frustrating. In raising a son who is different, I feel an even stronger responsibility to instill in him a sense of self-love. Why can’t we embrace our differences?
“If the drug is offered to my son, I’m playing God.”
True beauty lies in diversity. While I never envisioned having a child with dwarfism, I cannot fathom the idea of changing him. He is perfect as he is; his small size is overshadowed by his larger-than-life personality. His bright blue eyes and infectious smile are nothing short of gorgeous. Why would I want to alter something so extraordinary?
Yet, the prospect of this treatment is undeniably tempting. My son has undergone countless procedures and tests. This treatment could allow him to reach the bathroom sink without assistance. He could ride a bike without adaptations, and suddenly, the world would be more accessible. Many of the health complications he faces could potentially become a thing of the past. Why would I deny him the chance for a healthier life?
If this medication is presented to me for my son, I am making a monumental decision. My concerns resurface. Though the intentions behind the treatment are noble, what will he think as he grows older? He may appreciate my choice now, but will he later feel that I rejected the person he was? Or worse, would he resent me for not providing him with the opportunity for improvement? I know I’m fortunate to be in a position to make this choice, especially when I consider families who would do anything to be in my place. However, the weight of this decision is daunting.
Fortunately, time is on my side. My son is only four, and the drug is still undergoing clinical trials. I have time to learn more, observe, and contemplate. If the time comes for me to make this decision, I will face it with both struggle and gratitude for these shoes I am fortunate to wear.
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