Anyone who knows me knows that one of the biggest goals we strive toward is normalcy. Now I know of people where normalcy means many things; one thing it has not been for us is non-involved in diabetes care normalcy.
I have heard it stated many times that “I want my child to enjoy a normal life.” But there is a big difference between a normal life and a normal life with diabetes. We decided that we would never sacrifice good diabetes care for the sake of just being allowed to have a ‘normalcy’.
Now that does not mean there were days we gave our kids a break or a time-off or as my friend Joe says; “…take an extra meter out and run it over with the car to blow off some steam…” moment; we certainly have had all of those moments over the years.
But the one memory I will never forget was when TJ and Kaitlyn were very young. As young children we thought what could be better and more normal than taking our children to Disney on Ice. Like all kids, they loved all of the Disney characters.
In the early days, we decided that I would work and Jill would stay home to care for the kids and specifically for Kaitlyn’s diabetes care (she was diagnosed when she was two). With that in mind, we still needed two incomes as any couple with young kids and a house would need. So For over 12 years I held down 2 jobs and my days usually went from early am to almost midnight every night, 7 days a week; Saturday and Sundays my work day was a little better and started at around 10:00 am. That meant weekend morning times with the kids to take to breakfast or read or do whatever we wanted.
It may seem gruelling but I loved both jobs and I never had a problem with working. We never questioned it; it just had to be done so we did it. I share this with you not-so-much-that you hear my work schedule but so you fully appreciate the fact that anytime that I could grab some time with my kids…..it was a gift.
So we saved where we could and I scrounged around enough money to buy tickets to Disney in Ice for the four of us. It was going to be a treat among treats. This was not an easy task and I was so happy that we could arrange this for our kids.
We planned everything, took what we needed for Kaitlyn’s diabetes, and headed toward Nassau Coliseum for this night of magic. As we pulled into the parking lot Kaitlyn started to whine. Something was wrong.
By the time I reached a parking space Kaitlyn was screaming and crying at the top of her lungs. I am talking blood-curdling screams. Her face was purple. Jill jumped out o fteh car and moved to the back to tend to her. I took TJ and could only watch as Jill started everything in motion.
In horror I watched as her little, tiny, body completely locked at every muscle. She was as stiff as a board. Jill checked her blood sugar. There was no pumps back then; no cgms. Usually we had to mix two insulins. Kaitlyn was high and Jill reached for what was called ‘regular’ insulin and injected it.
Jill wrapped her arms around Kaitlyn and rocked her and held her.
And after what seemed like a million years; Kaitlyn started to calm down.
Jill continued to rock her back and forth in her arms. I was biting my lip not to cry as TJ seeing me cry was not something I need him to see at this moment. I wanted to walk around the parking lot but TJ was not leaving his sister’s side. So we all watched and waited.
Of course, finally, Kaitlyn came around and we started toward the entrance of Disney on Ice. We missed a good deal of the first half and once inside the kids enjoyed themselves to no end.
For them it was the night of magic…….for us it was a reminder of diabetes……the new normal.
I am a diabetes dad.
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