I’ve been searching for the answer to a question for many years now; pretty much as many years as Type 1 Diabetes has been a part of our lives. The question is this: What does hope look like? I’m talking visible, tangible, “I can reach out and touch this” hope.
I’ve searched a lot of places for it. Would I see on the Petri dish I got to peer into at a researcher’s lab, all junior-year-of-sciencey and squiggling as if in space? Would hope look like some kind of medicine that would be injected into my daughter to stop her autoimmunity, clear as a shot of vodka but more potent that we mere mortals could imagine? Would hope show itself to me as a machine; one that I truly trusted with my daughter’s life? Would hope appear in the eyes of a brilliant man or woman, dressed in a lab coat and knowing, with their heart and their mind, they had the answer? Would I see it as a walked to cure — or will I see it this fall as I Ride to Cure? I looked at them all, and never quite saw “the real thing.” For nearly 15 years, I never saw it for sure; never got my answer: what does hope look like?
And then yesterday, a partly-cloudy summer Saturday, hope showed its face. Out of nowhere. For the first time. Right in front of me as I reclined poolside on a lounge chair at our beach club, chit-chatting with my daughter and my good friend Cathy. Hope showed its face and my heart opened wide to it. And here’s what it looked like:
Let me explain. For almost exactly 15 years now, I’ve been my daughter’s caretaker and copilot in this journey we call T1D. I’ve wanted – no, make that yearned for – some kind of real hope for her every minute of every day while we did our best to fight this insidious disease. When she was little, I stood as her warrior, not only logging blood glucose values, counting out carbs and tracking every ounce of energy she expended, but digging deep to find future solutions: better tools. Hopeful research. Studies worth funding. I brought her along on this journey, teaching her about science and politics and advocacy and funding medical programs and lots of things most little kids don’t know about. I did this because when that day came that we truly “saw hope,” I wanted to be sure she too would recognize it.
As she grew older, I did my best to supporter her through the struggle that are the teen years with diabetes. I knew she had times when she thought she’d never see “real hope,” that the endless and constant battle that is staying alive with diabetes would never change a bit. There were times, to be honest; I nearly felt the same way. Research programs I just knew were going to change the world stalled. Others I had great hope in flailed before they got off the ground.
But as I raised her through these times, I kept at all we were doing. There was a song I loved to listen to and think about my girls all their lives. Called “Wonder,” it talks about the amazing process of growing up as a person who isn’t the same as everyone else. Diabetes aside – no; there is no putting diabetes aside – diabetes center, this song rang true for both my girls, Lauren the daughter with D and Leigh, the daughter who got to be the sister in the house with D.
“Laugh as she came to my cradle. Know this child will be able. Laugh as my body she lifted. Know this child will be gifted. With Love, with patience and with faith, she’ll make her way.”
I wasn’t too sure about embracing the “gifted” part. Sure I thought my girls were brilliant, but gifted? That felt arrogant. But the rest of it rang true, I hoped. With love, with patience and with faith: could they make their way possibly with those three things and without actually “seeing hope for real?”
I held onto that. And kept looking for hope.
Then came yesterday. If you read this blog regularly, you know that Lauren is doing so much better with diabetes in her life. But still, things have not been perfect. As for details, I don’t know, because I’m doing a really good job at extracting myself from the intense level of copiloting that one shares with a child growing up with an incurable disease. I’ve known for a couple of years now for Lauren to live life well, I have to let go. And I’ve been working at it. Just two nights prior, unable to sleep because of a crazy-bad lip sunburn I got while training for the JDRF Ride to Cure Diabetes (looking for hope! Always looking for hope!) I was thinking about that song and my girls. My older daughter just got engaged to a wonderful young man. Both have excellent jobs and school teachers and own an adorable first home. We see them often. It’s a dream. And Lauren. I know Lauren has been checking her blood sugar and taking her shots because I see the evidence all over my house. Needle caps, used strips, hurrah! And she just plain looks good. Everyone has been commenting on it this summer. She glows. She’s doing well in college and has a vision of what she wants to do with her life. Both my girls are unique, so I thought of that song line “People seeing me, I’m a challenge, to your balance. I’m over your head now. I confound you and astound you.” And I like that. Lauren might not look like the “model person with diabetes,” but she is moving toward making it work. I’m, kind of feeling like my husband and I are moving closer toward checking off the “success!” box on the parenting form. I’d planned on blogging about that.
So there I am sitting, and Lauren non-chalantly pulls out her IBGStar meter and checks her blood sugar. This led to my friend – a kindergarten teacher who has had children with T1D in her class – to ask about the meter and comment on how quick and small and cool it was. This wrapped into a conversation between them about how it’s going with diabetes and college. I kept my mouth pretty much shut. Lauren admitted to her years of less-than-optimal care, talked about how much she loved her new adult endo and then said this.
“But you know, great new endo or not, at the end of the day it really is what he told me from the start: this has to come from me. This is about me. This is my diabetes, my life, my choice. And I’ve finally realized that. That’s why I’m doing so much better.”
Hope. There it was. Right smack in front of me. I’m no Grinch but I swear to God (or whoever you pray to) I actually felt my heart grow three sizes that very moment.
I saw hope. Right in front of me. The real thing. If I wanted to, I could reach out and touch it. Heck, I could hug it. But I kept still and quiet, letting the amazing grace rush over me as my daughter and my friend chatted on.
I felt changed; transformed. I could not believe the two of them could not notice what was happening to me. Lauren eventually headed off to do some errands. I turned to my friend and said ‘I hope you know you just witnessed a life moment for me.” I repeated what Lauren had said, and told her it was the first time I’d ever heard her talk that way, and that I was profoundly changed from it.
“I thought that was really cool when she said that,” Cathy said, “But you were so calm about it, I figured she says that all the time.”
And so there it is. Hope personified. Right in the eyes of the very girl I’d been searching the world to find it for. Hope to me means a child can suffer the way she’s had to and still have an amazing life. Hope to me means a mother can bang her head against the wall and beg and cajole and worry and cry and even if she thinks it’s all for naught, it’s not. It helps and it matters and it all gels one day. Hope for me is that a young woman can look into her future, know that for the time being it sill contains constant monitoring, blood checks, shots, lows, highs, fears and upsets and say “just bring it on.” Hope for me means that while I keep looking for the solution, I don’t need to scour the earth looking for hope. It’s here. And I love it.
So now I think back to that song that means so much to me. And I realize, suddenly, I had the punctuation wrong. Because here’s how it really goes:
Laugh as my body she lifted, know this child will be gifted with love, with patience and with faith.
She’ll find her way.
And that is what hope means: She’s been gifted with all she needs to find her way.