Have You Remembered Your Child Without Diabetes Today?

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I have another daughter, Leigh. She is my first child, about four and a half years older than her sister Lauren (the one with diabetes). Leigh is beautiful and smart. And she’s giving. She works as a first-grade teacher in an inner city school where she tries to put little lives on the road for success.

I say this because, if you follow me in the diabetes community, you may not know that. And I say it today because all of us – parents raising a child with diabetes and doing our best to not let that consume us – need to stop and take notice. Are we doing all we can for our other children?

I’m not sure I always have. I remember when Lauren was diagnosed with diabetes. Leigh was 10 at the time, a smart, introspective, and quiet child who took everything to heart. I took her for a walk when she came to see her sister at Boston Children’s Hosptial, and I said something like this:

“It’s going to be a bit stressful for you for a few months. You are going to feel like all you ever hear is ‘Lauren, Lauren, Lauren’ and ‘diabetes, diabetes, diabetes.’ I promise you I’m going to do my best for us to move past that. But for now, it is going to feel that way. I want you to know it’s okay to tell me when it’s too much. Okay?”

Being the Type A first child she is, she nodded yes and said she understood. And then, I fear, internalized.

Here we are, 18-plus years past the day we took that walk. We’ve done well as a family. Both my kids (and now my son-in-law, Leigh’s great husband) are close. We all care about one another deeply and we stay in touch.

And yet, I have to say: it might just be possible that I’m still in that ‘diabetes, diabetes, diabetes’ mode. I wonder, sometimes, if Leigh has resented it. I wonder if, despite my determination to even things out, I’ve sometimes fallen short. I think back on how my husband and I tried to keep it balanced and wonder if that was even possible.

To be sure, I focused well on Leigh’s life and needs as she grew. I was the PTO president of her school back when Lauren was diagnosed, so I’d already dived into Leigh’s life and happenings. From the time she was tiny, I found playgroups and friends for her. I brought her to art time and story time and for walks along the waterfront. (She loved to feed the geese even though they freaked me out.) I read four billion books a day to her (it felt that way sometimes! We were anti-TV back then except for a daily dose of “Mousersize.” And a tiny bit of Sesame Street).

I worked very full time but I found a way to always have flexible time to be there for Leigh.

But diabetes seeped into our lives in more ways than I could have ever imagined. We became advocates. We formed a giant walk team. Lauren testified before Congress a couple of times, and appeared as an expert guest on CNN Life. Diabetes supplies took over multiple drawers in our house. I kept saying things were even, but how could they be? Diabetes had become like a second career to me, so there I was: a working mom with two very big jobs along with two kids.

And Leigh almost never complained.

Once, though, it all spilled over. Lauren was sick in the middle of the night. It was the year of the NovoVirus, when cruise ships were being shut. Unfortunately, Lauren inherited my “glass stomach” and I swear every time someone drove by our house with that virus, she got it. And went down hard. So it was the middle of the night and I had to zip her into Boston Children’s. Leigh was awake at the top of the stairs and as I rushed out the door (Dad stayed behind with her) she screamed “Seriously? Again? You have to leave again?” It broke my heart because yes, I had to leave again.

By the time I got home, maybe 24 or 48 hours later, Leigh was fine. Because that’s what my first daughter did and does – steps up and moves on. It’s a trait common to diabetes siblings, I think.

But I also remember a time it went the other way. Leigh being Leigh, she had won regional and state science fairs and was all over the local news. It was pretty much all we talked about for a while. One day, Lauren pushed back, saying “I am so sick of hearing about this science fair. It’s like our whole lives!” Leigh, without missing a beat, said “And now you know what diabetes feels like to me.”

I tried so hard to avoid it, but did diabetes complicate my other daughter’s life. I know she has felt guilt because she doesn’t have diabetes. How could she be mad at it? Was she selfish to resent it?

I know she has felt fear. Pee a few extra times and the thought flicks in your brain.

I know she has felt worry. She wants to grow old with her sister. She wants to share being aunts together. She wants the family to expand. She does not want diabetes to rob us of any of that.

Have I done enough to help Leigh, as I’ve helped her sister? I hope so. She’s wise and brave and beautiful, and deserves it all.

So now, I’m going to practice a little of what I preach. Meet Leigh. She’s a Fordham grad and a Northeastern Master’s grad. She’s an excellent tennis player and has a way with sewing and decorating that she absolutely did not get from me. She’s very smart, and spoke in full sentences by the time she was 12 months old. She is one of the most graceful and confident skiers I’ve ever taken turns with (and I ski with champions all the time). She’s quiet (imagine having me as a mom and being quiet?) and a very compassionate person. I don’t know anyone who does not like her.

I’m sorry that diabetes has gotten in the way, and I hope Leigh knows that I’ve done my best to celebrate her all the way along. The day Leigh was born my life became infinitely better and it just keeps getting even more so thanks to her.

I am sorry if diabetes sometimes clouded my ability to show all that. But know, when I work for a cure, I do it for Leigh, too. I do it so diabetes can stop robbing her of my time. I do it so things can be fair. I want that so very much.

 

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