As a therapist, I hear a lot about loss...
There is a photograph of lemons in my office. I wrote a book in which one of the chapters is titled "Making Lemons into Lemonade." I am all about exploring loss, working through loss, feeling the pain, coming out on the other side, and figuring out how loss makes you grow. I encourage my clients to find a new lens for understanding their greatest disappointments. I believe that those who look hard enough at their loss can even find joy and new meaning in their their life that would not be there were it not for their most devastating heartbreaks.
In spite of all of this, when my oldest daughter was diagnosed with Type 1 diabetes four years ago, I felt adamant that there could be no growth and certainly no joy to be found in the aftermath of this particular heartbreak. Type 1 diabetes is an autoimmune disease that attacks the cells of the pancreas that produce insulin; there is no cure, and it requires constant management to keep blood sugar levels within a healthy range. As a family, we lost our freedom to eat a meal without drawing blood and doing math. As a parent, I've lost countless hours of sleep staying up all night when my daughter's blood sugar levels are dangerously high or low. Most importantly, my daughter lost the freedom to be alive without a constant infusion of synthetic insulin. How could there be any growth or joy associated with the suffering that flows from hearing my daughter tell me that someone saw her checking her blood sugar and told her she was gross? The loss I feel with respect to her disease is essentially limitless.
Recently I was telling a colleague about some of the challenges associated with my daughter's disease, and my colleague asked me if she is happy. Yes, I answered without hesitating. She is a really, truly, exceptionally happy -- even joyous -- 10-year-old beautiful girl. There are many sources of her happiness -- her school, her friends, her family, her soccer team. But, if I am honest, no source has been more important than the role she has created for herself as an advocate. Soon after her diagnosis, at age 6, she expressed an interest in finding a cure for her disease. We, her family, have supported this interest and followed her lead. Over the course of the past four years, working with JDRF (the leading organization working to prevent, cure and treat type one diabetes), she has genuinely made an impact in the fight to cure Type 1 diabetes.
CNN recently reported that the artificial pancreas project is accelerating. This project is our best hope for some form of a cure. My daughter's testimony before an FDA workshop last November, in which she advocated forcefully and persuasively for certain roadblocks to be reconsidered, played a small but meaningful role in helping make this new technology a possible reality. She speaks regularly and passionately on the issue of the importance of finding a cure, she joins walk teams, she raises money, and her commitment to this cause is an essential and very positive piece of who she is and why she is so happy. She is making a difference and clearly, her most important experiences in her life so far have been through her work as an advocate.
Amazingly, our wonderful babysitter just participated in a clinical trial for the very same technology -- the artificial pancreas -- that was the subject of my daughter's testimony and the subject of Elizabeth Cohen's CNN story about getting closer to a cure. In Lesley's blog, she writes:
For the past 17.5 years, my life has been in the hands of either myself or my absolutely amazing parents. Artificial Pancreas Project aside, I really feel that I need to make a moment to acknowledge exactly how much my family has done to make sure that #1) I stay alive, and #2) I live the happiest and healthiest life possible for someone in my position. Stabbing your own finger with a syringe while trying to inject your severely underweight and malnourished newly diagnosed child with insulin is deserving of a medal itself, and that only barely describes the tip of the iceberg in regards to all that my family has done for me. Will I ever be able to repay them for the sacrifices that my Mom and Dad have made so that I can have the life that I do now? Probably not. But the best I can do is to live life to its extremes the best I can while still maintaining the incredible control over this disease that they've taught me.
Obviously, Lesley does not need to repay her parents. The inspiring and magnificent person who she is, which is in large part a result of the awful disease that she and my daughter fight each and every day, demonstrates the greatest gift and the truest joy any parent could ever hope for.