Long day of doctors' appointments today for both you and your sister. Left at 8 am and got home at nearly 7 pm. I'm tired. I know you and your sister are too as you both fell asleep on the car ride home.
You were so quiet and nervous on the way down. You were so sure that your HgbA1c was going to be "terrible." It didn't matter what I said...you weren't listening. You wouldn't eat breakfast. You have this theory that if your A1c is taken when your blood sugar is in goal then it is better. If your blood sugar is high when the A1c is checked, you swear it is higher. You say you have been collecting data, and you are sure this is a proven fact. I have tried to point out that the differences have been on the order of 0.2 which is not likely to be statistically significant, but even when I think I am explaining this in 11 year old terms, you nod and tell me you just know you are right. Hence, no breakfast today.
I watch you get weighed and measured, and your blood pressure taken. So normal to you now that you know the routine. You prick your finger and give the blood for the A1c. We are then taken to the room, and I see you glance back at the machine, hoping it is done and you can see the number.
You sit waiting for your diabetes provider. So quiet. So nervous. You almost always bolus off the dexcom, so there are only two sugars a lot of days in your meter. The 90 day average based on those is high, and thus you are sure the A1c will be too. It is so new to me to see you check your 90 day average and process what it means.
Your diabetes provider walks in smiling. She asks you if you know what a perfect A1c is for someone your age. She says she hates to use the word perfect, but that is what it is. You shake your head and she tells you it is 7. And, she hands you the paper with your A1c written on it. It is 7. I see the relief wash over your face. You shine a humongous smile. This one is yours. I have done the nights, but that is it. She knows this, and she praises you so much I honestly get tears in my eyes. I am so immensely proud.
I try to sit back and let the visit be between you and her. I learned so much.
There is a boy in your classes. He calls diabetes diaBUTese and tells everyone it is an infection of the butt. I didn't know that. Your amazing diabetes provider tells you he is obviously insecure about something, and goes on to make you feel better about it then I ever could.
You try to sit with your chin in your hand all the time. This way when you treat your lows no one can see. I didn't know that either.
You sometimes ignore your dex alarm in class and act like you don't know what it is either. Then you pretend to reach into your bag to get something out, while you discretely look at it and turn it off. I didn't know that.
You still feel some of the teachers don't understand your 504, and you are ignoring it at times. Taking tests when high as you hate feeling the teachers are annoyed with you. That, I knew.
You get low most days after gym. I didn't know that. And, that speaks to the control I have relinquished. Your provider is proud of that. She tells you that because you are doing all of this on your own and doing it so well, it will make it easier for me to tell you that you can go out with your friends alone, or spend the night. She is right.
I watch as you and she come up with a plan for what to do about gym. You discuss it as two adults, deciding on doing a temp basal. I watch as she asks you if you need her to show you as a refresher how to do it. "I got it," you reply. "I do it all the time."
You are right, kid. You got this. Four years in and you have grown so much it simply blows my mind. I hate that you have had to. I would give anything to take it from you. But, I also know that it is you. You are who you are, and who you will become, because of this.
At the end of the visit, your provider asks if you would consider being a mentor. You smile..."sure." She also takes you to see the endocrinologist (she is the CDE & nurse practitioner). She brags to him about your A1c and your self management. You are so proud. I wish I could bottle up all of those feelings for you and give them to you when you come home beat up from a school full of kids and adults that just don't understand.
You are my mentor. I hope you are your dad's. I don't know that I would be able to do what you do. I don't think I could do it as well. I thought I knew how amazing you were, but...I didn't actually know that either.
I am awe struck. What an amazing person your daughter is.
ReplyDeleteMy wife just forwarded this post to me. This might be the first post I've ever read from another Type 3 in a similar position as me. My wife was diagnosed at 29, now 13 years in, and our daughter at 3 years old (3 weeks after her birthday, one week before Christmas...) now 6. I'd just like to thank you for your obvious love and involvement in your husband and daughter's lives. Regardless of anything else, it is so difficult (for me) to be looking in from outside.
ReplyDeleteI have to say I am moved to tears by your 3rd to last paragraph. You say what I feel so frequently. While our daughter is nowhere near able to be as self-sufficient as yours, I watch how my wife models behavior for her, how my daughter responds, and know she will be ok, even while I am gutted by the unfairness of the diagnosis/disease - for both of them.
Your husband and daughter are lucky to have you there.