Tonight I did something I have never done before. I got paid to share my opinion. Normally, I do that for free! (*rimshot*)
I participated in a focus group for parents of kids with Type 1 Diabetes. Having never been part of research completed in this way, I was excited, but had no real expectations. Based on what I’ve seen on TV, I assumed I’d be in a room with five to ten other people, we’d be sitting around a large table with a moderator holding court, and there’d be a two-sided mirror along one wall. I was almost right. The table, the moderator, and the mirror were all there, but it was just me and one other person in the “group.”
We shared about our experiences with diagnosis, day-to-day management, and then opined on some products that are either currently on the market or in development for diabetics. Obviously, Cooper is one of my favorite topics of conversation and diabetes is a HUGE part of lives now, so participating in the conversation was easy and enjoyable.
Except for one thing…
The other parent was a mom with three children. Her middle child, a boy, is six years old, and was diagnosed when he was four. They were on injections for about six months before switching to a pump (the same one we’ll be using for Cooper). She spoke very intelligently about the disease and the management of it (as I presume any parent of a diabetic child would), but there was such a strong undercurrent of anger and bitterness to her words. Everything she said – whether she was talking about inserting pump sites or difficulties in enrolling her child in her church’s VBS – was laced with such deep hurt that it absolutely broke my heart. Our session lasted for an hour, and I was fine the whole time and truly did enjoy participating. But when I got in my car, I fell apart.
I completely understand the anger and confusion and hurt that goes along with this diagnosis. I feel those emotions to varying degrees every day. Every two or three nights, I still mutter under my breath, “I just can’t believe we have to do this,” when I’m preparing the glucometer for Cooper’s 11 p.m. blood sugar check. There are times when I stick the syringe in the wrong spot on his arm and a pinprick of blood rises to the surface of his skin, and I think, “I just made my child bleed. That freakin’ sucks and I hate that I have to do this.” There was a night a few months ago when I had to give Cooper a shot in the middle of the night and he totally freaked out (I mean…who wouldn’t?), and I was overwhelmed with sadness that this is our life, but more importantly, this is HIS life, and it’s something he will deal with forever (until he’s healed or there’s a cure).
But in the big picture, overall, we manage our emotions very well. And it’s not just a show. Cooper having diabetes is upsetting, but we don’t live upset. It is challenging, it is frustrating, it is consuming, but we rise to the challenge, we overcome the frustration, and we have truly taken it on as our new normal. Of course, we want Cooper to grow up educated about his disease with a sense of responsibility about the differences between him and non-diabetics. But the MOST important thing to me is his attitude about it. I don’t want him to be angry or bitter about diabetes. FEEL those things, sure, that’s normal, but don’t BE those things.
If I had to boil my theology and philosophy on life down to its bare bones, it would be these two things. Love wins, both in the moment and in the end, and rain falls on the just and the unjust. In other words, good stuff happens to bad people, bad stuff happens to good people, but love is always the answer.
I have not asked God “why” Cooper has diabetes. I ask Him almost daily to show us what we can do for the kingdom now that it’s here.
I don’t believe God “gave” Cooper diabetes. I ask Him to give Cooper a purpose and a destiny so that it can be used for God’s glory.
These are the core beliefs that help us manage our emotions and keep us sane. As I was driving home from the focus group tonight, I prayed so intensely for this mother who feels alone and angry, that she would release that anger and find a place of peace in the midst of some really crappy circumstances. I prayed for her son, that he would not grow up with that bitterness towards his situation, but accept it as his normal life and find a way to use it for good.
We’ve had diabetes for 10 months now. And I never thought “thankful” would be one of the emotions I associated with our diagnosis. But I am SO thankful…
…for a husband who has learned everything I’ve learned and can do everything I can do.
…for a community of family and friends who have supported us in physical and emotional ways.
…for a church community that has not looked down on Cooper or turned him away from any activities because of diabetes.
…for a diagnosis early in Cooper’s life so he won’t fight memories of a pre-diabetic lifestyle.
…for my sweet boy who has taken all of this in stride and just today said “I want to wear the insulin pump RIGHT NOW.”
Diabetes sucks. There’s no way around it. It is rain that falls on us every day, sometimes in a light shower and sometimes in a downpour. But it’s just rain. We won’t melt.
I am more thankful than I could ever say that we have the protection of those things listed above, and pray that this precious mother I met tonight finds an umbrella of her own to make it through this storm.