Parenting is often a fine balance. Am I supposed to just listen or offer advice? Should I problem solve or let my child come up with the answer? Parenting a child with diabetes is more of the same, but the questions can be so much more heart wrenching.
Jessica: "I hate carrying this bag." This bag is her fanny pack with her meter, glucagon, skittles for lows...it is to me her lifeline. It is what her dad and I spent sleepless nights wondering if she would be allowed to carry at her new school. Thankfully, she is and therefore can test in the classroom, and treat her lows. To us, it was a huge relief she would be allowed to carry it. To her it is heavy and I suspect a daily reminder that out of all of her classmates, it is her pancreas that decided on an early retirement.
Me: Wondering to myself how to address this..."I know honey, I wish you didn't have to carry it either." Translation- I wish your pancreas worked so that you wouldn't have to carry it, and test, and measure your food, and....
Jessica: "I hate diabetes."
Me: Easy one. "I hate diabetes too."
Jessica: "Am I really going to have this forever?"
Me: Heart breaking. "Until there's a cure...and until then I am here to help you and be part of Team Jessica." I struggle so much with this question. I strongly believe you can never take away a patient's hope. Sometimes that is all there is left. But, my husband said something so discouraging to me recently. I asked him why he did not enter his information into Trial Net. Didn't he want to be in studies that could lead to a cure? He told me that when he was first diagnosed with Type 1 he used to hope and wait for the cure. He's had it 22 years now. At first he was told there would be a cure in 5 years. Five years came and went. Then 10...he said that it is just to painful to get his hopes up. He just needs to focus on the present. I don't think he thinks a cure is coming in his lifetime. That broke my heart, and made me wonder if I am doing the right thing by giving Jessica hope that a cure will come. I remember our JDRF walk. She was seven. We got done walking and Jessica said "we finished the walk and raised over $7000 for the scientists...now is there a cure?" I hated explaining to her that it wasn't as simple as her seven year old brain thought it could be. I can't give up hope for a cure, and I know it is probably just as much for my survival as hers that I keep believing in one. The scientist in me thinks it is possible, the mom in me needs it to be.
Jessica: "Why did I get this?" I am sure the translation that she will not speak aloud is "Why did my twin sister not?"
Me: "We don't know, but it is nothing you did or anybody did." As, I silently pray...please don't let her twin sister get it too. I can't fathom the thought.
And, my favorite...
Jessica: "Why doesn't daddy have to measure that, but I do?"
Me: Struggling here. The truth...because I only have such a precious short time while you will still listen to me, and I know it. Because I spend every moment trying to give you the skills and teach you what you need to know to live a long, healthy life. Because I saw a Type 1 in the office today with retinopathy, neuropathy, and so many complications that I almost burst into tears. I so desperately want to try to force you to be the most compliant Type 1 that ever lived, because the thought of having to watch you develop complications, and slowly but surely fall into ill health is enough to shatter my heart into a million pieces. The thought that you may die before I do has entered my mind more than once, and no matter how much I want to keep it out, it is there. And, in my mind the only thing I can do to prevent it is to teach you, and give you the tools to manage this horrible, unrelenting disease. I wish your dad would measure everything, but he has lived with this 22 years and done a pretty darn good job of managing it. So, instead "Daddy should measure it, but he has gotten pretty good at guessing."
Every day there are so many questions. Questions that an eight year old shouldn't have to ask. And there are statements. "Mom, I am worried I will get low and die in my sleep." No matter how many times I reassure her that her Dad and I check her and keep her safe, the worry persists. It breaks my heart that a child even has these thoughts. Yet, this is not a disease that could be kept from her. And, it is not a disease that should be. She needs to know the facts to manage it and take control of it herself.
And, she has grown so much. I don't think I would recognize the little girl she was before she was diagnosed. She has matured years beyond her age. She has learned so much, and I like to think she has grown so much more self confident. She knows what she does on a daily basis compared to other kids her age, and I think she feels a sense of pride as well. She is the healthiest little eater I know. As her mom, I am amazingly proud of her. I may not have all the answers, and she has a never ending supply of questions, but I love that she feels safe enough to come to me with them. My hope is she always will.