Today is a monumental day for our family. No, it’s not anyone’s birthday or a holiday. It’s not a day most people reading this will ever reach as a milestone either. As of today, Everett has lived 265 days without Type 1 diabetes and 265 days with it. Not to sound cliché, but tomorrow is literally the turning point for the rest of his life.
Tomorrow and every day after, Everett will have lived majority of his days as a Type 1 diabetic. As of today, he is 17 months and 12 days old. When he is 17 months and 13 days old, his days will be marked with insulin, and finger pricks, high blood sugars and lows. Decisions made every day that walk a fine line between life and death.
The only life he’ll know
When I meet other moms whose babies had diagnoses, we console ourselves with the silver lining that “we are fortunate they were diagnosed so young so that’s the only life they know.” But I also see those moms post about how their child later asks if Santa can take away their diabetes for Christmas, or if they can just stop being diabetic. I fear the days when Everett asks for me to take it away. Baby boy, I would take it away a thousand times over if I could.
By the time Everett was 12 weeks in to his diagnosis, we had gone through a prescription for 600 syringes. 600 shots in just under 3 months’ time. I know there are parents who are thinking “I could never give my child 600 shots” but I guarantee you would if you had to. We were lucky Everett started an insulin pump 4 months and 8 days after his diagnosis. Some parents go years giving shots to their babies.
Shots of love
When we would give Everett shots, we’d give it in his arms or his thigh that didn’t have the Dexcom on it. I’d count to 8 and end with “You’re so brave” every time. By the end, he would look at me and smile. Like the shot was a display of affection and love. And that’s exactly what it was. We are his pancreas keeping him alive every single day. What other acts of love can be as powerful and displayed like that?
While I’m still mulling over how I want to celebrate his Diaversary, today is a day that will only come once. His short little life is divided equally in two at this moment in time. One half with only an extra chromosome and insignificant hole in his heart, and the other half with an autoimmune disease on top.
As I said above, he won’t know life without boluses and blood sugar checks and site changes. He may wish he didn’t have it sometimes, but he won’t know what it’s like to live a life free of that. His wish will be a wish of what if. As parents, though, we know exactly what his childhood could be without Type 1 diabetes. And sometimes I think we were dealt the harder hand. I know when he takes control of his health years down the road, that will no longer be the case.
We know Everett will be great at math. I have already imagined quizzing him on car rides “If your bg is 125 and you want to eat an apple, how much should be bolused?” Mathematical word problems taken to the next level you could say.
In the more near future, I hope he understands to sit still when it’s time for a new Dexcom or a pump site change. The mess Landon and I struggle with currently is only laughable after we have wrestled him through the entire task. It feels like a full workout every 3 days!
The rest of Everett’s life will see many changes in technology. We are hopeful to switch to the Dexcom G7 from the G6 in the next few months. That alone will be amazing! The G7 is significantly smaller, meaning we can place it perhaps on his arms or stomach rather than just his thighs every time. It also has a 30-minute warm up period instead of 2 hours. That’s 90 less minutes we are in the dark of where his blood sugar is at every 10 days!
There is also talk of insulin pumps that can include sugar/glucagon. They could treat highs and lows. And as Everett gets bigger, perhaps the algorithms where the pump makes decisions based on the CGM will work for him. Taking away more decisions and working with where he’s at based on his current blood sugar readings.
The ultimate prayer
And then there’s the ultimate prayer. That a cure could be found in his lifetime. Technically, Type 1 diabetes has research for a cure, but it requires the immune system to be suppressed so much to not attack a new pancreas, that it puts the individual at risk for many other illnesses, including cancer. But if Everett’s lifetime could see a true cure, what a blessing that would be to millions of individuals and their families!
Tonight, I will hold my son to sleep and tell him how brave and strong he is. I will tell him that tomorrow marks a new chapter, even if he doesn’t understand what I am saying. Neither of us may understand why the last 265 days have had to be this way, but I will gladly be his pancreas until my last breath on earth.