"You can do this." I repeat this to myself almost every day. My daughter has not taken off her "You Can Do This" bracelet since she got it. I don't know if Kim Vlasnik, the creator of the "You Can Do This" project has any idea how many lives she is truly impacting. The power of these four simple words is huge.
I see so many diseases and so much suffering on a daily basis. It is hard, and perhaps only human, to look at every disease I see and not compare them to Type 1. I am no doubt biased, but I have yet to see a disease that requires so much hourly (secondly?) work. And, I am not sure I have found one that is so laced with guilt. This by no means makes the other diseases easy to have. But, Type 1 seems to be its own unique daily adventure.
It has been almost three years...there is no end is sight. And, the mantra "You Can Do This" sustains both myself, my daughter, and my whole family.
So many normal moments that are impacted by Type 1.
We baked cookies together the other night. I stopped doing this for at least 2 years when she was diagnosed. I LOVE to bake (cooking not so much). I missed it. I needed to bring a dessert for work, and looked in the cupboard to realize decorated sugar cookies were the only option. I didn't intend for her and her sister to help. But, they quickly realized what I was doing, and like any eager ten year olds popped in to help frost the cookies and decorate with sprinkles. I saw her lick frosting off her fingers a couple of times. Who doesn't do this when they bake? I didn't plan ahead and bolus her for this unpredictable moment. And, I truly didn't see her take that many licks.
310. The highest number we have had in weeks. "I hate diabetes," Jessica yells when she sees it. I miss when she was seven in some ways. When the numbers meant nothing to her. When she didn't understand what it meant every three months when she went to her diabetes appointments and heard the value of her HgbA1c. I hate that we can't spontaneously bake and decorate cookies without later having her feel guilty. Of course, I tell her that we only do this on special occasions, that we have insulin and it will get that number down quickly, and that this is absolutely nothing she needs to feel badly about. And, of course, in my head I think "why didn't I bolus her?" But, how do you judge how much frosting a ten year old might lick? And, when decorating cookies at 8:30 pm at night, what parent wants to guess wrong only to have her bottom out later. And, this is truly the first or second time we've done this since diagnosis, so like everything we just need to learn how to do it with Type 1 in the picture.
"You Can Do This," I tell her. It is ok to hate diabetes. I hate it too. But, we had fun making cookies, and we will get this number down quickly. And, "You Can Do This." I see her glance at her bracelet.
A vampire site (Thank you Kerri Sparling for introducing me to the term!) The needle goes in and she yelps. Blood oozes. The famous vampire site that has hit a capillary and is now sending blood dripping down her leg. I pull it and apply pressure. And, of course we need to do another. She starts to get upset.
"You Can Do This," I tell her. Let's not let this become a big deal. Let's just get it done and move on with life and not let diabetes ruin the evening. She calms down, the new site change is done, and we move on.
"A boy at school said to me Oh, I'm high...Oh, I'm stupid...Oh, I can't take a test" Jess tells me. We have a 504 plan for the first time this year. If Jess's blood sugar is significantly elevated she defers major exams until it is in the normal range. It was the right thing to do. Taking an exam with glucose laced brain cells is not fair, and doesn't allow her to reach her potential. But, clearly other students have caught on to what is going on. "That must have been upsetting," I say to her..."How did you handle it?" Jess tells me she told him that she felt that was bullying and that he should stop. I am so proud of her..."Jessica!" I proclaim..."Wow...you handled that so well.....You Can Do This!" She beams with pride.
I wake at 5:30 am to prepare for the day. We find it is easier to manage Jess's numbers, and to ensure her school days are better if we pack her lunch every day. We spent hours researching the grams of carbs in the school lunches, but changes are made without notice, serving sizes vary, and to be honest, in a world where french fries count as a vegetable, I am happier just to have her pack. I hate packing her lunch. Measuring every blueberry on the food scale. Trying to balance a small treat with other food that has a low glycemic index so she doesn't spike too quickly. Making sure I put her post it note with the number of grams her lunch is in her bag. Checking her supply bag for lows, strips, a new tissue. It is a lot of work, and some days I'd love to just throw in a lunchable and call it lunch. I choose not to (this might work for some families) as I have seen in Jessica and Sean the difference high glycemic vs low glycemic foods make in their blood sugars. Some days I would give anything for a break.
"I Can Do This," I tell myself.
Blood sugars of 85 right when I had planned to go to sleep. Knowing that this means at least one more night check. Days with repeated unexplained episodes of hypoglycemia and knowing I'll be up during the night checking. Complete exhaustion. This is the life of every Type 1 parent I know.
"I Can Do This," I tell myself.
The hubby comes home from inpatient. "I admitted a patient in DKA last night," he tells me. Diagnosed at 12...now in her 30s. She just decided not to take insulin. I can see he is upset. And, I am too. How do we not worry this will be Jessica? People telling us "that will never happen to her...she is too smart," doesn't help. How can we possibly know how she will feel after living with this for 23 years by the time she is 30? I can not even begin to imagine how sick and tired she will be of it all. My heart breaks when I imagine the impact it will have on her in middle school, high school, college, and beyond. Site changes every three days for years and years. Multiple blood sugar checks a day indefinitely. Measuring every single stinkin morsel of food...or feeling guilty about it. The co-morbidity between diabetes and depression is huge. I hope we are giving her the tools she needs. I hope she sees that we are a team and always will be. My husband has told me how alone he has felt living with Type 1, how hard it was that when he was diagnosed he was old enough for it to be his disease alone, and what a lonely world that was. We have told Jess we will be there if she reaches a point where she can't do it another day and needs a break...no matter how old she is. We are Team Jessica.
"We Can Do This." My whole family can do this. In part, because quite frankly, we really don't have a choice. But, we CAN choose how we will do this. And, so far I am pretty darn proud of the way we are choosing to live. There is no doubt that this hated Type 1 impacts almost every hour of our life. But, we control it. We don't let it stop us. It may get each of us down at different times, but there is always a member of Team Jessica willing to pick that member back up. And, we are so incredibly blessed to have a big Team Jessica. Our friends and family who "get it." For every child that says something mean or rude to Jess, there are so many more who support her. For every grown up that says something insensitive, or fails to recognize how much work this is, and the impact it has on our lives, there are those that fill us with kindness and compassion. Our close friends, and members of the Type 1 diabetes community that we have yet to get to know well...they sustain us. And, we are showing Jess that she is not alone...it does take a village. And, most importantly I hope she sees that there is no doubt that she "CAN DO THIS!"