Another Painful Anniversary

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“If another child of mine were to develop diabetes, I will no longer be a nice person.” I said this many times in the months and years after Leo was diagnosed with Type 1 shortly after his first birthday. I suppose this was part fear and part warning. This weekend marks the 3rd anniversary of my 12 year old son’s diabetes diagnosis.

It was an uncomfortably hot and humid day in early July, not unlike how it feels today. I was driving a carpool of six boys to camp. Since I was running late, I asked Sam to help me out by checking Leo’s blood sugar. After impressing his friends by checking him, he announced he was going to check himself. I told him not to do this. It was annoying and unnecessary, and it wasted more test strips which would ultimately end up on the seats of my already messy car. He checked anyway and said, “Mom, I’m 400.” Just like that. I felt my stomach sink, and somehow managed to calmly say “wash off your hands with your water bottle, maybe it’s the sunscreen. No such luck. “Ok mom, it’s 390, I’m coming down.”

It was so far from “okay”, this BG was quadruple that of a healthy nine year old boy. Sam had not been having a great summer. He had started nightly shots for Growth Hormone (GH) deficiency nine days before this. Three days later he had a head injury on a boat (the camp’s first emergency on opening day) and ended up with 30 stitches above his eyebrow. Who knows if either of these things triggered the diabetes?  I didn’t have time to think.  At the moment, I needed to remain calm during the last five minutes of the slow,bumpy road  into the camp parking lot. I drop-kicked the kids from the car and brought Sam and Leo with me to the water cooler outside of the main building. I washed off my hands, checked my own BG, hoping it was a problem with the meter. No, my BG was perfectly in range.

I called my husband Adam, who, just like me, was hoping it was a temporary side effect of the GH. The endocrinologist, sensing the panic in my voice, advised me to check his urine for ketones before deciding the next step. We went home, checked for ketones (he had none) and that’s when she told me what I feared. With numbers that high, it had to be Type 1, not just insulin resistance from the GH. Speaking to her from my bedroom, Adam remembers me slapping and digging my nails into my thighs until they were red and raw. It was the only way I could unleash my anger. Adam told Sam we needed to go, at which point he cried “I don’t want to have diabetes.” I hugged him, held back my tears , and I put  some  numbing EMLA cream to his arms for the impending blood draws.

Routine provides comfort. The car practically drove itself to the diabetes center at Columbia. The parking lot attendants knew us well and welcomed us, and we made a beeline for the registration table on the second floor. The whole staff greeted us, and we were grateful for the hospitality and familiarity. That was the only positive feeling we experienced all day. When Leo was diagnosed almost 3 years prior, I was shocked and overwhelmed. Now I was only seething with anger. When the diabetes nurse educator said “well, there are worse things” I shot her a look, eyes like daggers and replied “don’t  say that to me.” I let Adam call my mom and sisters-I didn’t want to hear their reactions. I saved my frustration for Janet, my friend who is also the mom of a diabetic and celiac son. She always answered her phone. But this time, she was in the basement of Target with bad cell service and didn’t return my call for hours.

How was Sam? He was miserable. Just like us, he knew that diabetes was an awful disease which had already altered the structure of our family life. It was difficult to comfort him. I myself had trouble with the onslaught of “well-intentioned but unhelpful comments” from friends in our community.  Well. you’re the experts now. At least you know what to do. At least you are a pediatrician.  I restrained myself from screaming “Why can’t you just say that sucks?”

We had some important decisions we needed to make immediately. Sometimes it’s good when life forces you to forge ahead, placing one foot in front of the other. One month from date of his diagnosis, I was planning to take my older two boys to Israel for my nephew’s Bar Mitzvah. We had been looking forward to this trip with my family for years.  How hard would it be to take a newly diagnosed diabetic and celiac, tree-nut allergic child to a foreign country? I had visions of dehydration in the desert heat of Masada. In the end, we did it. It was challenging, harder than I imagined, but we wanted Sam to get the message that diabetes should never hold him back from anything he wanted to do. The same went for his soccer. He had just made a new travel team in a neighboring town. The coach was also a podiatrist, a specialty all too familiar with diabetes, and he encouraged Sam to play right away starting from the day  after he was diagnosed. I will always be grateful for the enthusiastic support of his team.

Am I still a nice person?  I like to think so. But for those of you who have kindly commented  on my positive energy and grace, you should know that it has been a work in progress.  In between fingersticks, phone calls, and mood swings affected by extreme blood sugars and puberty, I work hard to focus on the snapshots of my kids which make me smile. That way, when people ask me,” How are you, and how are the kids?”  I can answer “they’re doing great.”


8 thoughts on “Another Painful Anniversary

  1. I’ve read this 5 times and I cried each time. When Sam says “I don’t want diabetes ” I can hear my own child’s voice. He was so young but already knew so much which only made it worse; how many times am I relieved my patients only understand what they need to at the time so they can slowly digest their diagnosis? There were no nice things anyone could say to mommy or child; yes Nurse, it could be worse, it could be your family.

  2. Thank you for this intimate glimpse into your family’s journey, its pain and its success. Not only are you one of the nicest of persons, my friend, but your writing gives strength to others. I know your boys, Deb, have seen them in action, and believe that one of your deepest desires – that neither diabetes nor any chronic condition “should ever hold them back from anything they want to do” – becomes more of a reality every day.

    • Thank you-it’s true my deepest desire is that they are not not held back by any condition. I’m glad you see that, and hope that others can feel the same way about their children.

  3. That was a fabulous post, concrete and evocative, and communicated to me at least a superficial sense of that immeasurable stress. The thought of going outside of your established health and support systems that way is truly brave.
    Have a great week.

  4. What a moving story ! I want you to know I’m living proof that you should
    nevet let diabeties hold you back I managed to do a
    campnig safari in Africa , hike through the mountains of la reunion , and delivery 3 healthy children
    Never say never !
    Dawn

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