3:20 p.m.- Out of the corner of my eye I watch my 5 year old son Leo leave the kindergarten playground and approach some older boys to join their soccer game. These 4th and 5th graders are friendly, and they welcome him. As I walk over to get a closer look, two moms smile at me and ask, “He’s yours? So cute, so brave of him.” I mumble my response, “Thank you, he’s got two older brothers, and he loves soccer.” That’s all I manage to say, because at that moment I am struggling to contain my emotions.
I could tell them that when this boy was 1 year old he was rushed to an intensive care unit, almost in a coma, where he was diagnosed with Type 1 diabetes.
I could tell them them that diabetes means his life is completely dependent on the insulin he receives from a pump connected to a site in his little tush (behind) by a catheter. That’s the cute fanny pack he is wearing.
I could tell them that we check his blood sugar every 2-3 hours, 24/7.
I could tell them that everything he eats must be weighed carefully. His celiac disease further restricts his food choices by requiring him to be on a life-long gluten-free diet.
I could tell them that he often misses out on birthday treats because his blood sugar is too high at the time, and it is just not safe for him to eat.
I could tell them that despite our best efforts at good control, his dangerous blood sugar swings make him feel awful: exhausted, hungry, thirsty, sweaty, shaky and dizzy…
I could tell them that even a mild cold or change in weather patterns can drastically affect his blood sugars and that last year a mild stomach bug put him in the hospital for almost a week.
I could tell them that because of his low tone (which is unrelated to his diabetes), he has spent hundreds of hours in multiple therapies so he could walk without falling and sit correctly in a chair.
I could tell them all of this, but in all fairness, I should also share the following.
That in spite of and perhaps because of his medical challenges, he is a fighter: strong-willed and determined to get out there with the best of them.
That although he hates diabetes, he loves life. This he reveals with his bright smile and infectious laugh.
That when his oldest brother developed diabetes two years ago, it was Leo who became his courageous role model.
That although my 3 boys live a complicated lifestyle, they also demonstrate tremendous responsibility and compassion for others.
I could tell them all of this. Everyone has a story, a set of challenges, and I am sure they would understand the intensity of my emotions. Instead, I stand quietly and watch Leo run up and down the field… Who knows what tonight’s drama will bring, and what the blood sugars will look like overnight? I need this moment for myself, to record and to cherish. I need this moment to feel the joy this brave little boy brings to me and to everyone he meets.
Dr. Debra Etelson is a pediatrician and mommy blogger living in Westchester with her husband and 3 children. She is an Assistant Professor of Pediatrics at New York Medical College and sits on the Board of Directors of JDRF, formerly the Juvenile Diabetes Research Foundation. Debra is an advocate for her sons who have several medical conditions, including Type 1 Diabetes and Celiac Disease. You can read more by and about Dr. Etelson at www.mdmommy.com.