Yesterday I attended the memorial service for the 23-year-old son of a dear, dear friend. It was beautiful. Since the young man loved New Orleans, guests – dressing in bright colors and summer casual garb — were greeted as they arrived by children offering colorful beads. Throughout the afternoon, friends and family told stories that made us laugh, smile, nod in agreement and yes, cry a bit. The young man’s good friend played a bluesy New Orleans tune on his guitar and sang along. Feet tapped. Hands clapped. We all felt alive – and in the presence of this amazing young man.
I’m still contemplating all of it. But one thing the young man’s mother said really hit home for me. You see, her son (who did have Type 1 diabetes but it’s truly not relevant in this moment) had an accident a year ago that left him paralyzed. In this past year, my friend’s entire life has revolved around his long, long hospital stay; his long, long rehab stay; his many, many medical appointments; his transitioning into a adapted apartment, more medical appointments, and things I don’t even know about as a good friend. She’s been attached to him. And here is what she said about that, paraphrasing:
“In a way, this past year was a blessing. Because we (she and her husband) got something that few parents of young men his age got: lots and lots of time together. We talked about everything. Nothing went unsaid. So to you I say this: Don’t leave things unsaid. Tell those you love that you love them. Tell them every day. And keep close to those you love.”
Which got me thinking about our life with diabetes on board at my house. Because in a much, much lesser way (but in a very real way for us), diabetes has done that for us. In the almost 16 years that Type 1 has been a part of my daughter’s body and soul, my parenting demands, my family tapestry, our very being, it has brought us this blessing: we are pretty damn close.
I’ve had to talk to my daughter about way more than most parents ever have to. I know – I also had to function basically as her pancreas for years and I knew more about the workings of her organs on an hourly basis than most parents ever know – but it’s not about that. It’s about having been close to what made her tick. What made her mad. What made her sad. What success feels like. What a sad day feels like. Because diabetes was there, I had to dig deep and talk to her more.
Her medical appointments were almost always in Boston – a decent drive from down here on the South Shore. But that car time we spent together is time I hold sacred. Sometimes we’d be quiet for a while, letting one another’s mood or reaction to the day or fears marinate us for a while. But we talked a lot too. I can remember car rides full of high fives and others full of tears. Yes, some involved frustration and anger, but dammit, we shared all of it. We always went shopping or out to eat afterwards, making it an all-day thing. True, some might say she went along with it for the Lilly P swag, but I know in my heart it was for our companionship too. To this day, I still drive my now adult daughter to her appointments. It’s sacred time for us.
And when she was a kid and had struggles with stomach bugs, leading her to lots and lots of hospitalizations? There was no facebook or texting back then. No internet access. And only a few TV stations on the hospital TV. There are only so many times you can watch “Boy Meets World” reruns or play Candy Land, so we used the time to talk. About everything. There in our little world, we had only one another to focus on. A blessing, in the form of a mini crisis.
That extends to the rest of my immediate family too. Because I have not always been blessed with family that gives a hoot about me, one of my top goals in life was to raise my children in a family that truly cares and is close (but in a normal way. I’ll never demand Sunday dinner appearances but that’s another blog topic for another type of blog).
I realized early on that for that to be doable, I was going to have to find ways to make sure I developed that same kind of closeness with my daughter without diabetes or medical issues of any kind (Me to her when she was little: “Why do you think you never get sick?” Her back to me, in her, oh, 11-year old voice: “Every night before I go to sleep I thank my white blood cells for all their hard work!” Too funny).
So the gift diabetes gave me in seeing how to be close to my daughter with d helped me do the same with my other daughter. There could never be a time that the time spent could be equal, but I always made sure to take time to be alone with her too, and to be unafraid to talk about anything. To leave nothing unsaid.
It extends to my husband. Raising children is hard work period. Raising kids with both parents working while one of them has a chronic, incurable disease? You’ve got to stay close for that. It’s not always been easy, but we’ve done it. If we manage to stay together another few weeks, we’ll be married 29 years. (Although on our 25th a friend said “Happy anniversary, how many years?” To which my husband said “Fifteen happy years!” To which I said “Sean: it’s 25.” To which he said ‘Like I said … 15 happy years!” Ha ha. Humor helps). I think having to face hard things helped us all those years.
I know diabetes is a terrible burden to bear. We’ve lived it here. But like most things in life, it brings good as well. I’m so proud of my friend and how she carried herself yesterday in a most unbearable, unimaginable, unfair and just plain &*(^%#
ing wrong day that never, ever should have happened.
So I ask you to take her advice. Look at our D life and see how we can find this blessing in it. And then: celebrate it.
If she could, we certainly can.