Guest Voice: Finding strength in raising two children with hemophilia
I learned how to keep going even when I feel like breaking
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I never thought my life would be like this, but as a mother, I had no choice but to be strong for my children.
As a mother of two sons with severe hemophilia A, Lean Archer and Lukas, my world has been shaped by fear, vigilance, and unconditional love. And as if that journey wasn’t already heavy enough, my youngest son, Lukas, also has autism, which makes things more challenging because he cannot always tell me when something is wrong.
Each day is not just about surviving; it’s about fighting in ways people don’t always see. Living with hemophilia is difficult and exhausting because you never know when a bleed will happen or when even small accidents can become serious. A simple fall that a normal person disregards can turn into something dangerous for a person with hemophilia.
There are moments when my heart races at the sight of swelling, when I hold my breath waiting to see if pain will get worse, and when I have to act fast, even though I’m scared. I used to have nights when I didn’t sleep. I’d just watch my children, check on them, and listen to every movement, afraid that something might happen if I closed my eyes.
That kind of fear doesn’t leave you. It becomes part of you.
Then there is autism, another layer of both love and challenge. My youngest sees the world differently. There are times when he cannot express what he feels, especially pain. Imagine being a mother who fears internal bleeding and trying to understand a child who can’t always tell you what’s wrong. That uncertainty is something I carry every single day.
There are moments when everything feels overwhelming — when I’m tired, when I feel alone, when I question if I’m doing enough. Being a mother is not just a role; it’s a responsibility that never pauses.
Celebrating moments others overlook
But this journey has also changed me. It has made me stronger than I ever thought I could be. I learned how to stay calm in emergencies (sometimes), how to speak up for my children, and how to keep going even when I feel like breaking. I became their shield when the world felt too harsh, their voice when they couldn’t speak, and their safe place no matter what.
I’ve learned to celebrate what others might overlook — days without bleeding, small smiles, quiet moments, and progress that may seem slow to others but means everything to us. These are our victories.
Not everyone understands this life. Some people see bruises and think it is nothing. Some don’t understand autism beyond the surface. Behind all of that is me, a mother constantly watching, thinking, protecting, and loving with everything she has. This is not the life I imagined, but it is the life that shaped me. And if there is one thing I want people to understand, it’s that strength isn’t always visible.
At times, I may look like a mother staying awake all night. Sometimes, it looks like I’m choosing to be brave, even when I’m afraid. It may also look like I’m loving my children so deeply that I carry everything for them without hesitation.
To other parents walking a similar path, you are not alone. Your strength and love matter.
To my sons, you are the reason I keep going, even on the hardest days. You are my purpose, my fight, and my life.
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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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