I’ve recently found myself in the upsetting position of having to defend the 8 to 12 blood sugar checks we perform daily on Jenna to a pediatrician. It was during a routine check up. An a1c drawn at this appointment revealed pretty darn good control at 7.8. Still, this medical professional felt that checking Jenna up to 12 times a day on occasion, was excessive.
Jenna does not wear a CGM. For those who read my blog but don’t live with diabetes daily, first – thank you. You give a damn. You want to learn more. That’s so awesome! Second – a CGM (continuous glucose monitor) is a device that has a sensor which is inserted under the skin and stays in place for several days, measuring blood glucose in interstitial fluid many times throughout the day and night. It is a great piece of technology, but it has a ways to go before it is a consistently accurate and reliable way to monitor blood sugar. We are waiting until the technology improves before investing money and subjecting Jenna to yet another jab and another device to have to wear. In the meantime, regular blood sugar checks are necessary to ensure Jenna is safe. This means we get up every night, sometimes more than once depending on the circumstances, to perform blood sugar checks.
You see, each reading is merely a snapshot. She may be 5.8 at 10:00pm – an excellent reading, but what you may not know is that she is headed down fast because of the insulin on board from that bedtime snack she had or the extra hard playtime when she ran for an hour solid earlier in the day! By midnight she could be 2.1! The only way to know is to check.
I left the doctor’s office that day feeling so many emotions – anger, frustration, annoyance – but the worst, the absolute worst was the self-doubt and shame I felt. I actually let this doc get to me! I questioned whether we were doing the absolute best we could be doing for our little girl. He made me feel like we were setting Jenna up for failure with our diligence. How would she be able to pick up the baton when it was time to hand it over to her? This question was posed to me as I defended our nightly blood sugar checks to ensure her safety. He stated that if it were him, he wouldn’t be able to function on the broken sleep we were getting.
Never mind that I made the valid point that she will not just suddenly, one day, be charged with her entire diabetes management – that it will be a gradual process that has already begun that won’t overwhelm her. No, he felt we were setting the bar too high and needed to pull back. He then went on to assure me that Jenna would awaken if she were to go too low. Absolutely, for sure. Without question.
Now, the whole idea of checking and monitoring is to avoid highs and lows. AVOID them! Not to let them happen and deal with the low when it materializes in whatever frightening form that may take, i.e. seizure, or worse. I DO NOT want to have to administer glucagon, call the paramedics and pray that my daughter survives, all because I needed my sleep. We have survived the past three and a half years getting up in the night to ensure Jenna is safe. We have adapted, just as countless other parents have done. And I happen to know that not all people awaken when their blood sugar drops too low. Tragedies happen only too often. How does this doctor not know this?
I was a broken woman when he was finished with me – as broken as Jenna’s pancreas. I never want to feel that way again. And I never, ever want another parent of a child with diabetes to feel that way.
Being a pancreas to a child who’s own pancreas is busted is NOT easy. It is a constant, demanding, ever-changing, exhausting, unruly, scary, unpredictable, 24/7 job. No breaks – no holidays. Any parent who does this – any person with diabetes who does this – deserves respect and support – NOT criticism.
I recently read a quote written by another mom of a child with diabetes that sums it up beautifully:
…I have learned that it is not just about the needles and the numbers –it is about the constant burden of having to perform a critical body function externally . Think for a minute about having to tell your heart when to beat…and how fast. Imagine what it would feel like to know if you slipped for a moment what the consequenc es would be. It can be a heavy weight to bear at times.
Just for the record, I did tell this doc that, with all due respect, I was the parent of a child with diabetes – not him. But I did let what he said hit too close to my heart and I shouldn’t have. It took me days to recover from it. But with the help of my husband, who was furious at this doctor for making me feel so inept, and the reassurance of members of the diabetes online community who validated my diligence and questioned this doc’s knowledge of type 1 diabetes, I bounced back stronger than before. I felt reassured that I am doing the very best I can to keep my daughter safe and healthy and I shouldn’t have to defend what I do to ensure that goal is met every single day and night, especially to someone who doesn’t know what it is like to be a satellite pancreas – medical degree or not!
To the doctors out there: I urge you to tread carefully when you are sitting across from the parent of a child with type 1 diabetes, or a PWD. I know your intentions are good, but unless you have a child with type 1 diabetes, or you have diabetes yourself, you can’t possibly know what it is like to do what we do. Be positive, supportive and understanding. But above all, please be humble. Know that each diabetic person’s disease is as unique as a fingerprint and the approach to managing it can be just as varied and individualized. We are all doing the best we can. It’s not easy and some days are harder than others. You are merely one member of a team in the management of this disease; you are not the definitive expert, as hard as that may be for some of you to accept. Also, a little praise goes a long way. A pat on the back for the 7.8 a1c would have been nice.
Luckily, we had a check up appointment with Jenna’s endocrinologist two days later and received the positive reinforcement and validation we so desperately needed. We always have a positive experience when we see Jenna’s endocrinologist – who, by the way, feels that we are, in no way, paranoid or checking Jenna too much. As always, she applauded our efforts and praised our approach. I am so grateful for her.