The best part of my children learning to walk was the shock of delight I felt the first time a tiny, chubby hand reached for mine. A lightning bolt of joy from hands to heart.
Logan, my oldest son, is eight. I asked him, just a few weeks ago, if he was done holding hands with mom. With a look somewhere between complete love and absolute misery, he put his hand in mine, swung them wildly for about 20 seconds and then gently pulled away.
"That," I thought as I tried to stop my tears, "just might be the last time we hold hands."
Then there’s Jax. He’s just four. And judging from the bear hugs, I love yous and kisses that he showers on everyone, this mommy is banking on a few more years of hand holding.
But the real guarantee stems from his type 1 diabetes. I hold his hand several times a day. Grab a little finger. And draw blood. At four, Jax hasn’t quite mastered this himself, so it’s my job. More importantly, since he’s only four and obviously can’t take THIS task on by himself, it’s my job to keep him alive.
I’ve found routine in some of the tasks surrounding this overwhelming job the doctors handed over to me: Drawing insulin, pulling up soft tummy skin and injecting insulin before every meal. Throwing the glucometer (aptly named General Grevious by Jax) into my purse every time we head out the front door. Ordering massive supplies of test strips, insulin and needles every month. Dealing with billing errors from the pharmacy and insurance. Carefully reading the label of everything Jax eats, scouring for milk, casein or dairy.
I’ve even become equipped with an internal clock, almost to the minute that reminds me when it’s time for breakfast, snack, lunch, snack and dinner.
What I’m fighting about this disease, the parts that aren’t routine and probably won’t ever be, are the constant ups and downs. I take blood glucose levels, carefully measure food and count carbs. Watch Jax for signs of hypoglycemia (which by the way, I’m mastering quite well, thank you very much). I’m careful not to overshoot treatment of a low and mange the highs. I call the doctor’s office to talk about the flu, allergies, a 106.5 fever, vomiting, bowel movements, ear infections and growth hormones.
Then I collapse in bed. Only to wake up to the knowledge that all of the work from the day before will not help me today. Each day is different. We can only start all over again. And again. And again. And again.
It hit me softly, swirled around almost tenderly, while I was holding Jax’s hand. As I cleaned a sweet little finger of my sleeping baby boy, I stopped. I held one finger after the other, turning each one to inspect the fingertips. I rubbed my thumb over each raised callous. I noticed for the first time the tiny prickly red scars on both sides of every tiny finger. "What will these fingers look like in ten years?" I wondered. It’s been just five months and already the scars of diabetes are showing. "What will they look like years from now when you do this for yourself?"
Sometimes I look out the window, not really seeing what’s there. Wishing we’d had a few more healthy years. A few more carefree years without rigorous maintenance just to keep Jax alive. Just one baseball game at which we wouldn’t know about low blood sugar. One more vacation for which we didn’t have to pack an arsenal of medical supplies, snacks and juice. I’d even bargain for one more day. I’d relish every minute of perfect health. We’d go everywhere. Do everything. Eat the entire day. Snack till our stomachs popped over our belts. Stop at every ice cream shop we spied. Stay up all night.
The reality is that it’s been five long months; I’m ready for diabetes to go away. Instead, we are just getting started. The routine and constant ups and downs will continue for the rest of his life.
I weep for the day I hand this dreaded care over to my child. When all of my work becomes Jax’s responsibility. I pray that God prepares his heart and mind, protecting him from depression or anger when it hits him, like it’s hitting me. Jax never gets a break. One day, I’ll be free from diabetes, but my son will not.
hope for a cure. I pray for a miracle. I pray for huge miracles. But while I hold onto the dream of some supernatural marvel, God reminded me not to miss the miracles He’s sending to our family every day.
Jax made it through the flu and a fever of 106.5. Four days of vomiting didn’t send him to the hospital or dehydrate his tiny body. During every single one of his many sicknesses since January, his numbers have stayed fairly level, with no ketones. An ear infection didn’t faze him. That tiny pancreas is still making enough insulin to keep him off long lasting insulin, which severely increases his risk of hypoglycemia. After three months with no job, daddy was offered a job the week before Jax was diagnosed. We have great health insurance. I have a wonderful job with a flexible schedule. I’m the proud mom of the two cutest, smartest little boys you’ve ever laid eyes on. I am a child of God. God cares more about Jax than even I do.
I’m counting the little miracles. And actually, they’re really not that little.