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

A New Start

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.

1 comment:

  1. How brave of you to make that leap. I'm glad it worked out in such a great way:)