In 1992 when Kaitlyn was diagnosed, insulin pumps were just coming around to commercial use. At that time, the management tools were better than they were years ago, but of course not as good as they are today. When Kaitlyn was diagnosed, we were devastated. We learned many things in the early years but probably the biggest and hardest lesson was that diabetes is not our disease. It belongs to Kaitlyn.
Granted, it impacted everything but we learned the faster Kaitlyn ‘took on’ this disease the faster she would understand it and the more she had a chance at controlling her own future. To be clear, Kaitlyn surely had times when she had enough, when she was depressed, when diabetes started to edge ahead and think it might gain the upper hand. By giving it back to her, she learned to manage this monster at every different stage. It was IN her life, it did not OWN her life.
I best understood this when she was being interview for a news show when she was nine and responded to the reporter, “I have diabetes, diabetes is not who I am.”
Amen. Girl Defiant!
It was at that moment I knew we were on the right track. Going to support group meetings, having her involved with decisions (even at a young age), educating her the best way we could as we learned ourselves; all contributed to her feeling confident that there was not a thing she could not do. NOTHING.
Life was hers for the grabbing. Dance school, sports, school activities, and everything and anything was on the table for her to try. We gave her the choices to not only be involved, but also to accept the challenge of this disease; to know that a glycemic reaction was occurring and to tell us/a coach/a teacher. She needed to do things so diabetes was in managed and she could not be shy. She owned the management. Unless it was a severe glycemic reaction, she stayed in the nurses office until she felt better. We did not run to the school every time she went high or low. She needed to know we would not coming running every high, and/or every low. She saw her way through each episode.
In the earlier days, we were right by, but she did not know it because we wanted her, HER, to understand exactly what was happening. When we would go out when we first started with a babysitter, we would get in the car and just park down the block, just so she was used to us leaving. Each time we exited, it would be longer and longer until she knew ‘she had this’ diabetes thing,
We tried to minimize the fear by adding understanding. We minimized fear. Fear is the unknown, the more one knows, the better they will be. Mistakes were to be corrected and management tools were gauges, not report cards. And we were not afraid to make sure her medical team understood this as well. With the management tools in existence now, you can almost follow them every minute. Now more than ever, you need to get them to take charge. If you are following them like a drone, the rebellion at some point is going to be huge.
CGM. Don’t even let your T1D child even know you have an additional device monitoring them. The extra device should allow your child to do more on their own, because now you can make sure they are okay. You are the back up…..NOT The ones to do everything. Please trust me on this. Parents are doing more than they ever have before and as long as you are willing, your kids will let you. But to what end. Teach THEM to manage their diabetes. Don’t fall for that adage, “Well I’m taking care of it now because they are going to have to take care of it the rest of their life.” Would you carry them now because they will have to walk the rest of their life? Of course not. It’s exciting to watch them learn and be on their own; and with diabetes it’s no different and THEY WILL BE STRONGER THE EARLIER YOU START
The confidence they will gain is immeasurable. Kaitlyn was an elected class officer, in the prom court, and the homecoming court. She excelled in everything and I whole heartily believe it was because she learned to manage this disease during a time there were half the management tools around as there are today.
It was a long time ago since we started and in three weeks I’m walking her down the aisle and placing her hand in another man’s to have and to hold. That confident young lady has been ready for a long time and it started when she was six and she gave herself her first shot. It grew from there and we stood back as much as we could, helped when were needed, and allowed her stand when ready. Sure we were there. But as she grew and she wanted to do more and more, we let her.
It was so exciting.
Be there to pick up your child when needed…….don’t carry them the whole journey. They will run one hell of a race, but only if you allow them to walk first, on their own.
Remember that, sit back, and be amazed what they…….will teach you.
I am a diabetes dad.
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