🌼 Creating Joy on Purpose: Why Experiences Matter More Than Things for Medically Complex Children
- Shaynise Robinson
- Apr 7
- 3 min read
When you’re raising a medically complex child, you learn quickly that joy isn’t something you wait for — it’s something you create on purpose. It’s intentional. It’s sacred. And it becomes one of the most powerful tools you have to counterbalance the pain, the appointments, the limitations, and the uncertainty that come with chronic illness.
I never thought giving Raegan “everything” meant making sure she had the toys she wanted, the clothes she loved, the things that made her smile in the moment. And while she does enjoy all of that, I’ve learned that the most meaningful gifts I can give her aren’t material at all. They’re experiences. Memories. Moments that remind her she is more than her diagnoses — she is a whole child with a whole life worth living.
🌿 Why Experiences Matter More
When your child battles conditions like sickle cell anemia and liver disease, as well as the many complications as a result of those diagnoses, life can feel small. Pain shrinks the world. Fatigue shrinks the world. Mobility challenges shrink the world. And as a caregiver, you feel that shrinking too.
That’s why experiences matter so much. They expand the world again — even if only for a moment.
A trip to the store.
A drive with the windows down.
A new food to try.
A walk in the sun.
A memory made on a day when pain didn’t win.
These moments become anchors — reminders that joy still exists, that life is still happening, that she is still growing, learning, and experiencing the world in her own way.
🌼 The Shift: Focus on Creating Memories
As Raegan’s mobility challenges have increased, so has my clarity. The goal has always been to create memories with her and for her — but now that goal feels more urgent, more intentional, more precious.
She doesn’t need more things.
She needs more life.
And part of giving her more life means making sure she can access it. That’s why her upcoming appointment for a custom wheelchair feels like such a turning point. This isn’t just equipment — it’s freedom. It’s accessibility. It’s the ability to do simple things like grocery shopping without pain. It’s the chance to get out of the house more often. It’s the doorway to new experiences that add richness to her world.
🍃 Joy as a Counterweight to Suffering
I can’t take away her pain.
I can’t control her flare‑ups.
I can’t change the medical realities she faces.
But I can create joy.
I can give her experiences.
I can build memories that will outshine the hard days.
Joy doesn’t erase suffering — but it balances it. It softens it. It reminds her (and us) that life is still worth leaning into.
💛 What I Want Her to Remember
When she looks back on her childhood, I don’t want her memories to be filled only with hospitals, medications, and limitations. I want her to remember:
The laughter.
The adventures.
The moments we created on purpose.
The times we chose joy even when life felt heavy.
Because those memories — not the toys, not the clothes, not the things — are what will stay with her forever.
🌿 Choosing Joy Every Day
So this is where we are now:
Choosing joy.
Choosing experiences.
Choosing to expand her world in every way we can.
And as her caregiver, that’s the most meaningful work I will ever do.
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