This question has been weighing on me lately. Living with Spinal Muscular Atrophy (SMA) has shaped every part of my life — the good, the bad, the lessons, and the losses. It has made me resilient, resourceful, and strong. But it has also left me carrying questions I never thought I’d have to face.
One of the hardest? Whether I could raise a child who also had SMA. And if admitting that I don’t think I could makes me a hypocrite.
My Reality With SMA
I know exactly what this condition takes out of you — the physical battles, the emotional toll, the endless adaptations. I know the way it changes your milestones, your independence, and the way people see you.
And that’s why the thought of raising a child with SMA scares me. Because I wouldn’t just be imagining what it’s like — I know. I’ve lived it. And the idea of watching my own child go through it feels unbearable.
It hit me hard watching my niece and nephews. Their first steps, their little bodies running across a room without hesitation, their independence growing day by day. Beautiful moments that filled me with joy — but also an ache so deep it’s hard to put into words. Those were milestones I never reached. And in those moments, I wondered if my heart could take watching my own child face the same barriers I have.
Feeling the Weight of Judgment
As if my own fears weren’t heavy enough, there’s the judgment. People don’t always believe someone like me could be a “good parent.” They don’t say it outright, but I can feel it — in the stares, in the silences, in the way people skirt around the subject.
And it hurts. Because parenting isn’t about whether you can run after your child at the park — it’s about showing up with unconditional love. But those unspoken doubts still creep in, making me question myself in ways I wish I didn’t.
So here I am, asking myself the hard question: am I a hypocrite for not wanting to raise a child with SMA, while living with SMA myself? Maybe. Or maybe I’m just being honest about what I can and can’t handle. Maybe it’s not hypocrisy — maybe it’s human.
When It Comes to Family
For many, the conversation about children is straightforward. For me, it’s layered with complexity. People sometimes ask if I want kids — a simple question for some, but for me it brings a tidal wave of thoughts and emotions.
The truth is, having children when you have SMA isn’t impossible, but it comes with considerations most people never have to think about. It’s not just about whether I’m emotionally ready, financially stable, or in the right relationship. It’s about my body, my health, my independence — and yes, genetics.
Understanding Gene Testing and Possibilities
Genetics plays a huge role in my decision-making. SMA is inherited in an autosomal recessive pattern, which means both parents must carry the faulty SMN1 gene for a child to be affected. If both parents are carriers, the chances look like this:
- 25% chance the child will have SMA
- 50% chance the child will be a carrier
- 25% chance the child will be completely unaffected
On paper, these are just statistics. But when you’re the one sitting in a genetic counselor’s office, they feel like so much more. Numbers suddenly become possible lives. Percentages turn into “what ifs” that keep you awake at night.
There are options: IVF with preimplantation genetic diagnosis (PGD) to test embryos before pregnancy, using a donor egg or sperm to remove the risk, or adoption. And yes, there’s always natural conception — but that means carrying the weight of uncertainty and preparing yourself for every possible outcome.
People talk about these choices as if they’re neat and clinical, but they’re not. They’re messy, emotional, and heavy. None of them feel simple when it’s your body, your heart, and your future on the line. Even with science and statistics in hand, the truth is that these decisions go beyond numbers — they touch on love, fear, hope, and heartbreak all at once.
Society’s Timelines
Society has a way of handing us invisible timelines. By a certain age, we’re told we should have achieved specific milestones: finish school, get a job, find a partner, get married, buy a home, have children. These expectations are so ingrained that when your life doesn’t follow that path, it can feel as though you’ve failed some unwritten test.
Living with SMA, I’ve learned that these timelines aren’t just unrealistic — they can also be incredibly damaging. My journey has been filled with moments where I felt “behind” or “different,” simply because my life didn’t mirror what was expected of me. And while I’ve grown to embrace my own path, there are still moments where those societal whispers creep in.
Redefining What “Family” Means
What I’ve learned is that family isn’t defined by biology alone. It’s about love, connection, and the people who stand beside you no matter what. Whether that means children by birth, adoption, or choosing a life without kids, none of those paths make you “less.”
We need to stop measuring ourselves — and each other — against rigid timelines and outdated expectations. Life is not a one-size-fits-all journey.
My Truth
So here’s where I land: I may never follow the traditional script of getting married young, having kids by thirty, and ticking the boxes that society holds up as success. But my story is no less valid. I am building a life filled with meaning, purpose, and love — even if it looks different from what was expected.
The weight of expectation is heavy, but I refuse to let it crush me. Instead, I’m learning to set it down, step aside from the timeline, and write my own.
Choosing Hope
Even in the middle of uncertainty, I try to hold onto hope. Hope that science will keep moving forward. Hope that more people will understand the realities of living with SMA, instead of judging from the outside. Hope that, no matter what path I choose, it will be filled with love and purpose.
I don’t have all the answers yet — and maybe that’s okay. What I do know is that my life, my choices, and my voice matter. And if sharing my truth helps even one person feel less alone or rethink their assumptions about disability, then that in itself is a kind of family — a wider community bound not by blood, but by understanding and compassion.
Because at the end of the day, the journey isn’t just about timelines, expectations, or genetics. It’s about living fully, bravely, and authentically — and writing a story that feels like mine.
