DMD Clinic Days with two boys are exhausting and overwhelming… but also such a blessing that we can see all of their specialists in one place.
Yesterday was our every-6-month marathon day.
5am wake up to head to Chicago for a 7am appointment… that lasts about 7 hours.
We start with all the tests—EKG, Echo, Dexa scan (bone density), spine X-ray, and pulmonology testing… then settle into one room for the rest of the day as each specialist comes in.
Cardiologist, pulmonologist, endocrinologist, physical therapist, occupational therapist, nurse practitioner, neurologist, orthotics specialist, child life specialist, social worker… and I’m sure I’m still missing some.
Each specialist comes in one by one, and you’re trying to soak in everything they’re saying… while also remembering everything you need to say.
Keeping two boys, two care plans, two sets of meds straight—it’s a mental marathon in itself.
There are always those moments of,
“Wait… that was Mason’s med—no, Dawson’s…”
Total chaos at times.
And all of this happening while the boys are in the room, doing their best to be patient and behave through a very long day.
It’s a lot. Mentally, emotionally, physically.
And this is just the beginning because our boys are still so young.
But even in the chaos, I see God’s hand in it all.
He goes before us in every appointment, every conversation, every result.
He gives me the strength when I feel overwhelmed and the peace when my mind is racing.
I’m so grateful for a team who knows Duchenne and cares so deeply for our boys… and for a God who walks with us through every step of this journey.
One day at a time… trusting Him in all of it.
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