I Wouldn't Choose his Condition. But I Would Always Choose My Son.

On exhaustion, gratitude, and the courage to live fully with what life brings.

I have a son with Duchenne muscular dystrophy (DMD), a progressive condition that causes his muscles to weaken over time.

It's a serious diagnosis, and the uncertainty about his future is something our family lives with.

Is it easy? No.

There's heartbreak, worry, and letting go. Sometimes daily. Sometimes moment by moment.

But isn't letting go part of raising every child? Perhaps ours is simply an amplified version.

Do I always handle it powerfully?

No! Sometimes I'm tired of everything that's needed, everything that's asked of me. Sometimes I simply don't want to help anymore. I don't want to be patient, nice, or supportive.

And other members of our family have difficult moments, too. Every so often, I have a fight with God and throw a temper tantrum. Then, eventually, I pick myself up, dust myself off, and return to my life.

Because this condition is part of our family life. But it isn't the whole of our life.

And there's another side to our story.

I've learned to be deeply grateful. For the little moments. For the love I feel. For a flower in bloom. For each of my children. For the beautiful experiences we share.

I've learned to slow down and become more patient, because my son often moves at a different pace. And believe me, patience is not my strong suit! 🙂

Of course, I wouldn't have chosen the difficulties this condition brings. But I can recognize how living with them has changed what I notice, what I appreciate, and what matters to me.

We don't want to postpone living.

The truth is, we have an extraordinary life. We take chances. We seek adventures. We try not to let fear decide everything for us. Like four years ago, my husband took a three-month sabbatical, and our whole family went on an amazing trip. What a gift that was!

We don't know what tomorrow will bring. And perhaps that's why we try to make room for the experiences that matter to us today.

Not because life is easy, but because life is worth living now.

A question from my daughter

One day, one of my daughters asked me why her brother had this condition. I told her I didn't know. But I also told her something I knew with absolute certainty.

If I had to choose between having my son with Duchenne muscular dystrophy or not having my son at all, my answer would be clear. I would choose my son.

And she agreed. I wouldn't choose the condition. But I would always choose him.

And perhaps that's what I've learned most about gratitude. I don't have to love every circumstance of my life to deeply love the life and the people I have.

Some days I'm exhausted. Some days I fight with God. And some days I'm overwhelmed by the beauty of it all.

All of those feelings can belong to the same life.

And all of that is part of our story.

With thanks to Martina