Diabetes doesn't care if you're exhausted, have work deadlines, or your beloved grandmother has died. It doesn't care if you're sick, or overwhelmed, or just plain sick of it all. It doesn't care if you have a math test, or a race to run, or are in the middle of an important work meeting. It is selfish and demanding and relentless.
Jessica had her endocrinology appointment this week. I love where she goes, and her caretakers there. But, I have to be totally honest. With Type 1 diabetes, 99% of the management happens at home. We lowered her Hemoglobin A1c from 8.1 to 6.8 in three months. This is a huge accomplishment. And, it took an enormous amount of work. And, 100% of it happened at home, with no communication between her diabetes care providers and us. This is not to say that they would not be available if we were to ask for help. But, once you learn the ins and outs of changing all the basal rates and I:C ratios, it is really a self management disease.
Last visit we were congratulated on lowering her Hemoglobin A1c from 8.2 to 8.1. I am a physician. I know that this could have been laboratory error alone. And, while I hugely appreciated Jessica's provider trying to give us encouragement, and I do the same thing as a physician, this really bothered me. I try so hard to motivate my own patients..."wow...you were 322 pounds last time I saw you, and now you are 320 pounds....great job!" I know patients are all just doing their best. I am just doing my best. But, I left that visit telling myself that I just knew we could do better. Again, this is not to say that we didn't appreciate the encouragement, or that I am not encouraging of my own patients when they make small positive changes. But, I felt that we had reached complacency. We were used to the pump. We were used to diabetes. We had been managing things the same way since we got the pump, and we were getting positive feedback. And, it was a lot of work already. Being congratulated on moving a lab value by 0.1 just seemed to highlight the complacency.
And, so things changed. Every family living with a Type 1 child needs to figure out what works best for them, and there is no "right" way of doing things. The hubby and I had been co-managing Jess's diabetes since she was diagnosed. For a number of reasons, we decided I would take over sole management of her rates and ratios. Part of this stemmed from conversations I had at CWD FFL with another mom whose husband and daughter also have Type 1. We discussed how managing their own diabetes was already such a burden for our husbands, and by taking on the management of our daughters we could help not add to that burden. I also realized that when two people manage a condition, no one truly takes ownership. Some days I would get home from work late and not look at her meter figuring the hubby had done it. Other times I would wake at 3 am and check her blood sugar without being aware of what had already been done. This worked fine. But, I have never been one to settle for fine. And, I just knew we could do better.
And, so Jessica and I became a micro-team within our little family of four team. And, we were super stars. No matter how busy or tired, every single day I reviewed her meter and took action. I have woke between 2-3 am nightly to check her. We nailed her basal rates and I:C ratios and she jumped up and down with glee and ran to tell her diabetes provider when the machine at the office flashed 6.8 this week. And, I was thrilled and proud.
But, the problem with diabetes is that it does not end. I am used to cramming for exams and then feeling the relief when they are over. Medical school and residency rotations may have been challenging but they ended. Parts of my job are horribly demanding but there is relief when deadlines arrive and there is a temporary pause. A day full of seeing patients ends.
But, there is no end here. I am tired of it all and I just want a break. My grandmother died. I just wanted to grieve, but diabetes was there with its highs and lows that could not be ignored. I ran my first half marathon as part of a relay team (6.55 miles!) and even though my kind husband volunteered to wake to check her at 2 am, I still woke up. Work meetings interrupted as her blood sugar is high and the babysitter is scared. Another growth spurt resulting in once again rates that need to be changed. Her Hemoglobin A1c was fantastic...can't we take a break now?
But, diabetes does not end. And, I must once again dig deep inside to find the energy and strength that I need to continue to keep it in its place, all while continuing all my many other responsibilities. I am filled with such admiration for my husband...almost 24 years of doing this day in and day out. I simply don't know how he does it. And, yet he does, all while dealing with all the other stressors life brings.
I am filled with admiration for my daughter. I am filled with pride at the decisions she makes every day. Choosing to delay dinner as she is close to 300. Telling me she thinks a rate needs to be changed. Dealing with all the little comments and looks that occur daily. Handling the miserables highs and lows. The site changes, the numerous pricks that have left permanent callouses on her small fingers. She handles it all with such grace and strength.
At our visit this week her provider asked her to talk to a newly diagnosed family. The little girl was seven-the age Jess was when she was first diagnosed. I was so proud that she wanted to help. And, I can only imagine how much that would have helped me at diagnosis to see such a healthy, happy ten year old who was diagnosed the same age as my daughter. She amazes me.
I am filled with admiration for all the wonderful T1s I have been privileged to meet. I am amazed by what they do to their bodies day in and day out. The way they handle the highs and lows. The littlest ones who can't even understand what is happening, to those I have met living with type 1 healthily for 50 years or more. They are my inspiration and my heros. And, they give me strength. If they can do it, then surely I can do it. Diabetes may not end, but neither does the determination of the human spirit. And, we can do this.