Life lately

Hi friends, it’s been a minute. Although it’s not a full Naptime Notes newsletter, I had a few quiet moments this morning while everyone slept and wanted to drop in your email inbox and share a few thoughts.

After weeks of waiting, we received the results back from Charlie’s genetic panel and discovered that he has PACS-2, a rare genetic condition. Right now, there are about one hundred confirmed cases worldwide. PACS-2 is the cause of Charlie’s seizures, and may also be the cause of some developmental delays and intellectual disabilities in the future. It puts him at a higher risk for autism as well as a couple of other things we’re monitoring.

We have a diagnosis, which gives us some answers and many unknowns. However, we’re no strangers to therapies, specialist appointments, and digging through medical journals at 4am for answers. In many ways and for many years, God has been preparing us for how to love Charlie well and for that I’m grateful.

Charlie is thriving and hasn’t had a seizure since July 22nd, which has been a total grace from Jesus. We continue to adjust medications, and we’re hopeful that he will grow out of the seizures and the need for medication eventually.

He’s a gift.

Every one of my children is a gift.

My brain is exhausted from keeping track of a variety of prescriptions for multiple children, helping little kids process big emotions, and waking in the middle of the night to feed a baby and suction Will’s trach. Needless to say, the past three months have been a whirlwind.

But we are so rich and blessed.

I’m tempted to worry about a long list of things, the specifics of which I won’t share in this newsletter. I can spend hours wondering about what my life will look like in ten, twenty, thirty years. But I’m intentionally focusing on today. Sometimes I have to hone my focus to just the next hour on the hardest days. Yet in the midst of the hard and heavy moments, Jesus reminds me that I lack nothing. He provides everything.

The past few months have been full of neighborhood walks, hospital waiting rooms, outdoor concerts with the kids, surgery recovery, and finding our rhythm with homeschooling, preschool, and therapies for the boys.

Normally, I’d share a list of poems and books as well as some links to things that have made my life slightly easier. But if this summer has taught me anything (and it has taught me many, many things), it’s that there is so much grace in the present moment and that joy doesn’t come from things you can add to your Amazon cart.

It only comes from Jesus.

So here are just a few moments of total joy I’ve experienced lately:

• Watching Joseph hold Charlie and laugh and talk with him

• Maeve speeding down the sidewalk on her bike with no training wheels

• The gentleness of William with baby Charlie. Will is my rambunctious, rough-and-tumble guy, but when he comes over to kiss Charlie’s head, he’s as sweet as can be.

• Our neighbors, who brought flowers to my door the day Charlie was born

• The incredible teachers, parents, and therapists at our school, who have held my children and hugged me as we navigated a crazy summer

• Watching William swing in a big kid swing for the first time

• Dear friends who text me to check in on how we are doing

• The countless family, friends, and religious sisters who are holding our family in prayer every day

• The rush of climbing to the top of the rock climbing wall at my gym at 5am

• The kindness and patience of our home health nurse who has been a true God-send

• How settled and calm Maeve is after time in the Catechesis of the Good Shepherd atrium

• The girls delivering bouquets of zinnias to neighbors all by themselves

• Preserving, pickling, and freezing a bountiful garden harvest

• Reading Jane Austen

• My boys in cardigans as the weather gets chilly

  

“You’ll find big magic in the mundane, the big picture in a small frame. Everything is sacred when you take time to notice. Big love happens in the small moments.” - J.J. Heller