So, along this diabetes journey I have learned so much about my daughter. Throughout her life we have tried to protect her, as most parents do their children. I remember right before she was diagnosed with Type 1 we had called every pharmacy within 2 hours looking for flumist (the nasal flu vaccine) so that she would not have to undergo the flu shot. You see, unlike her sister, she has always had such fear and panic over medical encounters, and especially shots. I remember feeling the irony when just a few weeks later she was diagnosed with a condition that would require four shots daily. Kids are programmed so differently, and I have been blessed enough to have one daughter who allowed her forehead to be stitched up without anesthesia and who laughs when she gets a flu shot, to her sister who reacts as I've already described. I say that I have been blessed because it has taught me so much empathy as a physician. I have often listened as staff have talked with disgust of the child that must be held down for shots, or who panics when he needs even a rapid strep. Oh, I think to myself...they don't have one of those children. I do, and since I also have her fraternal twin who has been raised exactly the same way and yet handles things so differently, I appreciate the genetic differences between children. And, perhaps just as importantly I also appreciate the stress and embarrassment their parents feel when they take them to the doctor. We have tried many different ways to handle her fears throughout her life, and thus have spent a great deal of time trying to protect her from those situations she fears so much.
What it took diabetes to teach me was that she is actually the bravest little girl I know. Behind that veil of terror and panic is a child made of steel. A child who is not afraid to be different, a child who has stood up to mean accusations as to why she has diabetes, a child who checks her blood sugar 10-14 times a day (which is more than any of my adult patients), a child who gave herself 4 shots a day, and a child who tonight inserted her own site and did every step of a site change at the young age of 8.
But, she doesn't always look brave, and it took diabetes to teach me how to help her realize how brave she is. I remember back to when she was first diagnosed. She would cry and beg us not to give her the shots. She then came up with this routine where she would count to 100, then tap her fingers all before we could give her the shot. All the while she would be shaking and sweating. A good friend reminded me at that time that I should be happy she had found a way to cope. This was good advice, but what I didn't realize until recently was that allowing her to do those things was actually the worst thing we could have done. What I have learned about Jessica is that for her the "before" is so much worse than the "after." She is a child who is consumed by fear so much so that she visibly shakes and sweats, but when the experience she is so afraid of is done she immediately is relieved and moves on without a look back.
We spent weeks trying to compassionately help Jessica give herself her first shot. She was so close so many times...her little hand shaking as she tried so hard to do it. Many times I reassured her that it was ok she wasn't ready, only to watch her try over and over night after night. How surprised I was when we went to a family support weekend and one of the counselors watched Jessica trying and then assertively, forcibly told her "Put it in!, just put it in!" I watched with shock as she did it. It was then that I realized for the first time that perhaps the kind, gentle approach I had always taken with Jessica was not actually helping her at all.
Tonight, for the first time she announced "I want to do a site change." I don't know what sparked this decision, and I have to admit I was definitely more than a little nervous as our pump trainer had told us the average age kids attempt this is around 12. But, I was not about to dissuade this interest. I led her through step by step all the preparatory steps and she did amazing. Then the time came to actually insert the set. We have the spring loaded sets, and I have to admit they even make me a little nervous with their quick and somewhat loud insertions. Jessica panicked and cried and begged me not to make her go through with it. But, I have learned. I saw through the tears and the pleas and realized that what she needed was not for me to tell her it was ok, and we could try again later. What she needed was for me to tell her that she is braver than she realizes, and that she can do it, and that she would do it. I did not back down, and even though it killed me to hear her cry and plead, I told her assertively that she would do it, and as I told her "push the button now!" she did it! I don't know if she was more surprised or I when we realized she had done it. She looked at her site with such pride and such relief. She proudly called her grandparents, and she instructed me to tell her diabetes care provider as she was just so proud of herself.
Thanks to diabetes and the lessons learned, we did not go through weeks of watching her suffer as she tried so hard to insert her own site. She did it the first night. I wouldn't know my daughter so well if not for diabetes. And, I don't think she would know herself so well either. I remember when I first met my husband I was so surprised when he told me that diabetes was his biggest strength. I didn't fully understand then, and maybe I still don't, but I think I am closer to understanding. I wish with all of my being that Jessica had not been given this burden of diabetes. Type 1 is a relentless, unforgiving disease. But, I can also see that it too might end up being her biggest strength.
I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.
And, of course, it is by no means meant to offer medical advice.
Wednesday, January 5, 2011
Time has flown and I have not emotionally been in a place where I could write. We went through a very rough fall and learned some very big lessons. This summer we had the huge gift of attending a Family Support Weekend for families living with diabetes. It was an amazing, life changing experience. While we were there we couldn't help but notice pumps, pumps, and more pumps! In fact, it seemed that every child with diabetes except our own was on a pump. The weekend was filled with wonderful classes, and deep bonds were created. We left the weekend with a new deep understanding of how much better Jessica's life and our own lives could be on pump therapy. The other wonderful thing that happened was I realized that while I had always thought Jessica wearing a pump would bother me I no longer was afraid it would. I met so many beautiful, happy, healthy children with their cute pump packs, spy belts, and big silly grins. I realized that I didn't see the pumps, but instead their big personalities and heroism. I had always been worried that if Jessica were actually attached to a pump I could no longer deny on any level that she was different. In between shots it is easy to deny this beast, easy to pretend life has not so dramatically changed. But a pump would be a constant, daily reminder. I had not, until that weekend, seen what the trade off was and that it would actually free Jessica from this beast in so many ways.
Armed with knowledge and full of optimism we went to our next follow up diabetes appointment and asked about pump therapy. We were coming quickly to the one year anniversary of diagnosis and I was anxious to take steps forward. We had been on a consistent carb plan (45 grams of carbs with every meal, rigid snacks of 15 grams each) and absolutely no flexibility. I was exhausted from telling Jessica that she couldn't eat when she was hungry. I was tired of telling her that diabetes wouldn't stop her and she could do anything, while at the same time constantly telling her no to all the other foods kids ate in front of her. I now had a glimpse of what life with a pump could look like and I was ready.
Unfortunately, our diabetes team was not. I could describe in great detail the barriers we faced, the tears that were shed, the sleepless nights wondering if we would ever be "allowed" a pump. I remember with great heartache Jessica asking us "Why won't they let me get a pump? Have I been bad?" We struggled and were paralyzed with what to do and where to go. Irrational thoughts would enter my consciousness such as moving to be near the best diabetes care in the country. But, where was that? It was so hard to know where to go, and whether it would be any different there.
And, then, as life has a habit of doing, it worked out. I came across the name of an old medical school classmate. I last saw him over 13 years ago at our wedding and haven't spoken since. Luckily for us, he ended up becoming a pediatric endocrinologist within two hours of us. We transferred care, and I kid you not, within two weeks Jessica had her pump.
Starting a pump is a blog entry all unto itself, but here is the lesson learned. If you know, deep in your heart, that your child's diabetes team is not a good fit, move on. This relationship, like others, is hard to break, but break it you must. The Children With Diabetes website has a column on how to know if you are receiving standard of care. Look at it. If you are not, move on. This disease is hard enough to live with without having a diabetes team that you trust, and that you can work together with.
We love Jessica's new team. Jess runs and hugs her nurse practitioner when she sees her, and my old medical school classmate is now her pediatric endocrinologist. It is reassuring to see him, and I trust him. He and the nurse practitioner are a team, and the nurse practitioner is my daughter's new cheerleader. She tells me she is counting on Jess to become the doctor who discovers a cure for diabetes. She reminds Jess every time she sees her that she is "Jessica- a beautiful, smart, wonderful girl who also happens to have diabetes...NOT Jessica, the girl with diabetes." Our new team has given me hope, and I felt a huge weight lift ever since we transferred there. I wish this for every family living with a child with diabetes. Until there is a cure, we deserve, at least that.