We are home, but our bags are still filled with unpacked clothes and a lone hospital blanket. One counter in the kitchen has been cleared of cookbooks and instead has become the new hub for vials of insulin, needles, syringes, glucose meters, and food scales.
We are finding our new normal.
“478” reads the meter in the middle of the night. “No! Please, just let me sleep!” I stroke my little boy’s head as my husband pinches his thigh and pushes in the needle. “It’s all over, buddy. You were so brave!”
Gulping down tears, he yells at me, “I don’t want to have diabetes anymore, mama!”
I had someone stop me the day after we were released from Children’s hospital. “I’m so sorry. But, at least it’s not cancer!” She quipped.
I stood still for a moment, with my child’s hand locked in mine, trying to process the emotions that came barreling through my chest like a freight train. “Yeah, I guess so,” I responded, as a cold hug was forced upon me.
As I drove away from that woman, I drove straight into rage.
Please, tell me that my feelings of heartache and grief are not valid because my child could be sicker. Tell me how manageable this disease is while I’m shoving Lifesavers in my little boy’s mouth because he’s not waking up fast enough.
Reassure me that it could be worse as I have flashes of my 4-year-old being pinned by adults; while I trace my fingers over his bruised arms and legs.
I could explode with anger. I could scream and cry and shake my fists at the universe — but I don’t. Little feet stand next to mine. Little eyes watch how I respond. My words are guiding him through this journey. So, while my fingers scream words with my keyboard, I smile and beam with pride when he is watching.
One week into his diagnosis and my little boy is grabbing his glucose meter and pricking his own finger. His voice elevates with excitement when he reads a number that is below 200. He is teaching me about strength and courage with every bead of blood pooled on his tiny fingers.
This disease will not break our family. Instead, we will sculpt these feelings of disparity and unfairness, and use them as a catalyst for change. Today is the day I stop being a martyr and start being an advocate. For my brave boy, for my Angus.
Editor’s note: Angus was diagnosed with Type 1 in December 2013 and currently uses an Omnipod, Dexcom, and has a service dog, Bruce! This piece was originally published in Mamalode.
Read Maggie’s story on What to Consider Before Getting a Diabetic Alert Dog.