Outlasting the wait: What 15 years have taught me

 

On Aug 20, my wife Sook Yee, my son Branden, and I picked up three small bottles of medicine from a pharmacy counter.

I had pictured this moment for years, and always pictured it loud - tears, maybe, some kind of shout of relief.

Instead we signed forms, carried the bags to the car, and drove home mostly quiet, the conversation turning to what we should have for dinner, as if it were any other evening.

It wasn’t numbness. It was more like my body finally letting go of a breath it had been holding for 15 years.

Fifteen years. That’s how long since a doctor first told us to prepare for the worst.

It was hard, but…

For a long time, the wait was for the world to catch up to science, for a treatment to exist at all and be approved anywhere.

Then it became a wait for doctors here willing to treat a condition most had never seen, and for promised funding to reach him instead of being pulled elsewhere.

I won’t pretend this journey has been anything but hard, because that would be a lie.

There were nights I did the math on how much longer we could afford his care. My wife and I both walked away from careers we’d spent years building - a lot of it, spinal muscular atrophy (SMA) simply decided for us.

SMA is a rare neurodegenerative condition that’s fatal if left untreated. But here’s the part I don’t say out loud often enough: it also gave me things I wouldn’t trade back, not even on the worst nights.

I know my son in a way I don’t think I would have otherwise. He paints now. He has opinions about colours I don’t share. I get a front-row seat to every bit of that, because front row was the only seat we ever had.

Sook Yee was always the better crisis manager between us - firm and clear-headed when a decision couldn’t wait.

We didn’t always see things the same way, but we never disagreed on our kids, and 15 years taught us how to keep moving forward through our differences instead of getting stuck in them.

My older son, Jaden, grew up inside all of this too, and never once asked for any of the attention that went to Branden, even while quietly carrying his own medical battle. He just kept building his own life, proving our family could hold two stories at once.

There was family on both sides too, each carrying a piece of it unasked - quiet prayers, in-laws who took over Branden’s care so we could breathe, caregivers who kept showing up for work most people would find impossible. We know it was you.

Appreciate the small moments

These last few months brought their own exhaustion. The compassionate-access programme that had kept Branden on this medicine since 2020 was discontinued, and the only alternative was a price tag of more than half a million ringgit.

For weeks we didn’t know if that gap would close in time. On Aug 20, 2026, finally, it was decided.

The three bottles are sitting in our fridge now, plain and unremarkable, nothing about them hinting at what it took to get them there. We took three photos, and none of us quite knew what to say.

We got one ordinary afternoon - a small deliberation in the car about where to get dinner - and I don’t think I’ll ever stop noticing what a gift that is.

To every family still waiting on their own version of today, I don’t have anything wise to offer, except this: hold on to the small, ordinary moments in between.

They’re not the consolation prize. They might be the whole point.

15 years, 15 lessons

Along the way, 15 years also taught us 15 things - not specific to SMA, I think, but true for any family navigating serious illness or disability:

1. Ask for help early. Don’t wait until you’re drowning to say it out loud.

2. Don’t get stuck on “why”. There’s rarely a satisfying answer, and hunting for one burns energy you need elsewhere.

3. Let your child’s cheerfulness pull you out of despair, not the other way round.

4. If there are siblings, protect that relationship on purpose - close, but also ordinary.

5. Guard your marriage too. Caregiving strains it as much as anywhere else, often quietly - keep choosing each other.

6. Be disciplined about love and attention. It doesn’t distribute itself fairly on its own.

7. Keep searching and reading, but stay present. Don’t let the future cost you today.

8. Build a team. This kind of life is whack-a-mole - you need a tribe, not just yourself.

9. Be open and honest. It’s uncomfortable, but it’s how the helping hands find you.

10. Expect the unexpected. Your first reaction to bad news is rarely your best one.

11. Nothing comes easily - plan for that. Keep pivoting instead of ruminating.

12. Listen and learn before you speak. It makes you constructive, not just a complainer.

13. Watch for rainbows. Notice the big, unexpected good moments, and hold on to them.

14. Know your values. They’re what you return to when nothing else is certain.

15. Embrace your child wholesomely - not the diagnosis, the whole person. Mkini

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EDMUND LIM is Branden’s father and an access-to-medicines and rare disease advocate in Malaysia.

The views expressed here are those of the author/contributor and do not necessarily represent the views of MMKtT