“Twenty nine days, Gracie.
Parts of these 29 days feel like they’ve lasted 29 seconds.
Some parts drag on to the point where they feel like 29 years.
And other parts are moments that my brain doesn’t fully register at all.
Meagan very quietly took some photos of the day we put you to rest. She knew I might want them some day—not to remember the pain, but to remember the people who came to celebrate you because they love you.
Truthfully, I downloaded them and promptly hid them in a folder on my laptop because I wasn’t ready.
I went looking in that folder today for the photo of your casket lid, mostly to read the notes that people left for you.
In the middle of this storm, I needed to see the reminders of your joy and your impact.
I found it.
The notes from your Kayla, your Kady, your Ms. Eggert; the scribbles from your Isaac. The Baby Shark stickers.
You were loved.
And then I scrolled to the next photo, assuming that it was the same image from a different angle.
Instead, I found four of the people who carried you through 4.5 fragile years carrying you to your hard fought rest.
The hematologist who was never satisfied with never having the answer to the mystery that was you.
The one who was with you for every single infection, every single biopsy, every single hospitalization due to febrile neutropenia.
The one who sang ‘Itsy Bitsy Spider’ every time you asked and teared up the day you climbed into her lap umprompted—after she had been your doctor for almost three years.
The TPN pharmacist who knew you better than anyone.
The one who saw every minute change in liver, kidney, and bone marrow labs.
The one who saw rough patches coming from a mile away and compounded your literal life sustenance every week.
The one who sent you stuffed puppy dogs and always made the time to hug you when you gate crashed his office.
The pediatrician who moved mountains for you even though you tolerated him at best.
The one who chuckled at being told that he was not your beloved nurse Ra-Ra and was growled at every time he came within 3 feet of you.
The one who would never admit that you were probably the only patient he expected to chomp at him every single time, without fail—and that despite being a big, burly tough guy, he had a soft spot for you anyway.
The palliative care specialist who was with you from moment one.
The one who saw you go from a scowling, terrified baby on her mama’s chest to a world and medicine weary toddler to a bossy pants,’only on my terms’ pre-schooler.
The one who you christened ‘Dr. Swing’ and was the only one in all those years and specialties that you asked for by name—because she was the only one in all those years you ever fully trusted to never hurt you.
You changed them, Gracie. You mattered to them.
And they miss you.
Mama does, too.”
This story was submitted to Love What Matters by Kelly Dirkes. You can follow her journey on Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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