Sure, I get it; after diagnosis our lives are never normal again. How could they be? This is an incredibly taxing disease, on us, our family, and most of all on our child newly diagnosed. It was in the middle of the thought process on how horrible our lives had become, and would continue; on September 26th, 1992 when I had the realization that this would just not do.
Now clearly the majority of this challenge fell squarely on Jill’s shoulders to achieve, it was something we agreed upon. Once we decided that I would work the two jobs to try to make sure everything was not lost financially, Jill became the ‘keeper of Kaitlyn’s life’. But together we learned, and shared. But never to think otherwise, and I have said it many times before, Jill did the day-to-day with Kaitlyn and she is the luckiest girl on earth to have the mom she has.
Was it too early to start this at the age of two, Kaitlyn’s age upon diagnosis? We thought not. Did we cry? Yup and a lot (but she never saw). But our energy was razor-focused on making sure we knew all we could and spent numerous hours finding out about this disease. I have said it a million time, knowledge is power, it is the equalizer in this diabetes world.
That power would be reflected in Kaitlyn’s life. That power would be to rely on no one’s word but our own knowledge….NOTHING was taken at face value….we found out for ourselves. We asked a million questions, We made a million phone calls. We spoke to a million people. Everything learned went into ‘the educational hopper of our mind’ and out came a course of action.
We decided that diabetes would stop Kaitlyn…..from nothing, and when Rob was diagnosed (our youngest of our three children) at age 13 in 2009, that same philosophy was now a part of life. It took a lot of work. It took a lot of education. There was no daily FB chat with families going through what we went through–it did not yet exist to the extent it does now; we had to go and find it….and we did.
In today’s world my only warning is just because you see it in an instant means of our present online world….NEVER take it as gospel truth. Great place to start but remember that because it works with one person, does not mean it will work with your child. Your source of action is up to you. Ask….ask….ask….run it by your professional medical team….and go ask….ask…ask again. Decide. The course of this journey is up to you.
To be honest with you, our worrying was out-paced by our thirst for knowledge. There is the Children with Diabetes Friends for Life Conference every year, there are camps, there are support groups……..we did not choose one……we did them all. We did not support one organization over another, we supported as many as we could in any way. If not financially, we volunteered our time. Great people are involved all over and we wanted to be near as many as we could who had more knowledge than us. It taught us that this now-no-longer-normal could be much closer to normal than we ever thought. Right up to the time Kaitlyn came home from school and stated “I’m thinking I want to try cross-country”. Really?
If she wanted to try something, be something, or do something; it WAS OUR JOB to make sure she could………………….whatever it took. And we did. Was she ‘all state’? No. But she would not have been ‘all state’ if she didn’t have diabetes ether…..and THAT is the point. She did what her abilities allowed. Class officer, lettered in a sport of her choosing (just because she wanted to), Homecoming Court, Prom Court, Scholarships, this club, that club, this event, this trip, sleepover, whatever………because SHE wanted this…….she got it. And ‘she-sure-did’; she did it all while managing her diabetes.
Add to this mix is that it was a much ‘different diabetes’ when she was first diagnosed. Insulin pumps, CGMs, smaller syringes, pens……..nope……none of it in every day use like today
That did not make this job easy, just easier than when we started. It still comes down to you. What part of this disease is acceptable to you? If it’s none of it; than do all you can to get back to where life was. Know that it will NEVER get back exactly the way it was but if you spend more of your life TRYING to achieve that than completely being swallowed up in the grief on the lost childhood you think you now have; your child will be better off.
Kaitlyn graduated Nursing School less than a month ago, she prepares for her exam as we speak; Rob works full-time and goes to school full-time and last night he spent hours making some-sort of crazy buffalo-chicken-type-pizza from scratch. That, my dear friends, is what I call as close to normal as it could ever be…….that is all we ever wanted.
One final word, we also were/are VERY well aware that at any given moment his disease could completely destroy a life. The way we handled that thought was, yes, that COULD happen and it would be absolutely devastating. But I decided that should fate EVER throw that in our path, I damn-well better be able to look myself in the mirror and know THAT I DID all I could to stop it. If I needed to work harder—I did. That simple. You can listen to naysayers or you can chart YOUR course. Never once did I say it would be easy………but I learned a long time ago……the harder you work at something, the ‘luckier’ you will be…….after that; it’s up to Whomever you believe in. This has served us well for over 23 years, I hope it helps you just a little. Something to be said, ‘with experience’.
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