I have often wondered what your days at school really look like. How do you do it? What does it really look like? I hear random bits. The girl that teased you, the test you had to take during recess, the pride when you know you made a good choice.
Yesterday I shared part of your day. Your school had classroom visits, and I sat and watched you like a fly on the wall.
I didn't know that you wear your diabetes bag on your back the entire day. I wonder if it is uncomfortable to sit with it on your back as you lean against your chair. I see you go to the front of the class to write on the Smart Board and it is there-on your back. As your mom, it seems to scream out "my daughter is different...she is not like the rest." I ask you about it at lunch and tell you that you could take it off and put it on your chair. "No, mommy- I want it on my back- I can't lose it there-it has everything I have to have." I realize this bag represents your safety. As long as it is on your back, you can take care of yourself. In a world that I don't think you fully trust to take care of you, you seem to know that as long as you have your bag, you will be ok.
I watch you check your blood sugar before the math quiz. You miss all the verbal instructions the teacher gives as you check. You smile as you hold up the meter to show me the "104." I remember you telling me how the teacher sighs if your blood sugar is out of range, and how much you hate giving up recess to take the quiz then. I find myself once again wondering if the right thing to do is really allow you to reach your full potential by not taking tests when your blood sugar is high. And, then I think what a ridiculous question that is.
I sit with you and your friends at lunch. I see their lunches. "See mom---see what they all have for dessert?" you ask as you hold up your one small peanut butter cup. I am so sad as I think "but their pancreases work, and if they eat these desserts they will still be able to learn well...while you will be in a hyperglycemic fog." I tell you I do see, and I promise to myself that I will try to give you a bigger dessert but realize that something else will have to go. Your friends may be able to eat a 100+ gram carb lunch, but we have seen time and time again that the best I:C ratio does not hold with high carb meals. I can't explain this to you. And, I shouldn't. But, I find myself hoping that someday you understand why your dad and I have done so many things.
And yet, I think you are happy. You hate diabetes most days. And, the lows and highs are relentless. You still fear pump and dexcom site changes. And, you do get teased. But, you also have found good friends. And, above all else, you are still just a ten year old girl.
I am so proud of you. Every single day. And, as I sit like a fly on the wall I almost tear up with this pride. I know deep in my heart that this is YOUR life story. I may have suitcases full of my own emotion and baggage about your diabetes, but they are mine alone. You are living your life and triumphing. I know diabetes has made you stronger and healthier than most your age. I see how much more empathetic you are towards others that also have their own diseases to manage. And, I know that because of diabetes you will do great, amazing things. You are my super hero, Jess.
Wow. What a moving post. I especially connected with the part about her bag being her safety, and always wanting it on her.
ReplyDeleteShe's a super hero for sure.
Great post :) I hate that bag of safety as a D parent too, but I really do think our kids dont see half the burden and emotional issues we see as parents. Hopefully. Some days, of course they do....but overall I think they fare much more emotionally balanced than we think they would.
ReplyDeleteI love this post! Jess is adorable.
ReplyDeleteLike you, I recently visited my T1D child's classroom, and saw some surprises. I *wish* my son had a bag attached to his back--Jess is brilliant! I want to see it. Is it a teeny tiny backpack?
And I never thought to have my son *not* test with a high BG, I only thought as far ahead as imagining me asking if he could re-take a test that he bombed. So far that has not happened--not because he is so smart, has such "good control," or is so super lucky, but because they don't seem to give tests in 4th grade.
I am glad Scott brought you into my window on the DOC! I look forward to reading more!
Any chance you get to watch your kid go through regular routines outside of the house is something special—kind of like watching those NatGeo films of wild safari animals. But I, too, am especially touched/amazed/proud/angry and even a little bit shocked every time I see all the extra stuff our kids have to contend with when it comes to taking care of their diabetes. The fact that they do it day in and day out with mostly a smile (and good grades), puts them in the same category as the infamous honey badger. Great to have discovered your blog.
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