Parents: It’s not about you.
A life-changing diagnosis affects the whole family, but you are not the gatekeeper of pain and suffering.
September 8, 2015, was a day that will live etched in my brain forever.
Sitting in the children’s hospital, staring at my gaunt, pale 10-year-old son I ran the words over and over in my mind.
Type I diabetes.
I knew what I was seeing long before a drop of blood confirmed it. For days he had been excessively thirsty, getting up to go to the bathroom in the middle of the night, stopping in the middle of a soccer game because he was too exhausted to run anymore. But when his cheeks started to hollow out I could no longer pretend it was just a virus.
It was a beautiful Tuesday afternoon when we saw our pediatrician. I listed off his symptoms, already knowing what the test results would say. The nurse got the blood glucose meter. 546. I had failed my son.
I failed him because I recognized all of the symptoms (excessive thirst, excessive urination, excessive fatigue) but didn’t get him medical attention sooner.
I failed him because in the 45-minute drive between our pediatrician’s office and the children’s hospital I couldn’t adequately convey the seriousness of his condition.
I failed him because I gave him 50 percent of his genetic material that was obviously flawed.
Somewhere between day one when he had his first injection and day two when he did his carb count for lunch, my beautiful, intuitive, tender-hearted son turned to me with a look of horror in the perfect copy of his father’s hazel eyes and said, “I have to do to this for the rest of my life, don’t I?”
And that was when I heard a voice in my head say, “Jen, it’s not about you.”
I had been making his life-changing diagnosis about my guilt, my failure, my inadequacies as a parent. In my grief, I overlooked the fact that at 10 years old, my son was dealing with actually having the life-changing diagnosis.
There was no way I could be the gatekeeper of emotional pain and suffering on this one, no matter how hard I tried. I couldn’t suffer all of the burdens of his chronic illness. He had to stick his finger 6–8 times a day. He had to give himself injections every time he ate. He had to recognize when he was feeling “off” and know what to do to correct it. He was 10, not 2. Try as I might, I could not protect him from the pain and suffering type I diabetes would bring, he had to bear more of the burden than I ever could.
Looking into his sweet, child-like face, I knew what he was asking. “Is this hell my new reality, Mom?”
It was one of those moments where you know what you say will impact your child’s trajectory forever; one of those conversations where you have seconds to think, where you pray to say the right thing.
I sat on the hospital bed, put my arm around him and said, “Yes, you could have diabetes for the rest of your life. But I believe researchers will find a cure. You will have to test your blood sugar and give yourself shots for a very, very long time while we wait. But the cure will come.”
He wiped away a tear and nodded, satisfied that there were hope and happiness ahead.
That same scared little boy will be 14 in a few months. He’s nearly six feet tall. He rock climbs and build robots and wants to be a mechanical engineer. His A1C is exactly where his endocrinologist wants it. He talks about diabetes to everyone that will listen, especially to newly diagnosed kids who struggle to come to terms with their condition. He is an absolute rock star.
I am grateful for that moment of clarity early on. My son’s diagnosis was never about me and my failure as a parent. Type I is an autoimmune condition, the result of a weird batch of genetic soup. There is nothing I could have done to prevent his immune system from killing off beta cells.
My role as his mom wasn’t to shield him from the physical and emotional toll his diagnosis would take, my role was to help him understand how to be a normal kid in spite of it. It was never about me. It was about helping him become the man he was always destined to be.
Parents: It’s not about you.
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