This weekend marks twenty-five years that my husband has lived with Type 1 diabetes. I have known him for nineteen of those years. I have witnessed firsthand the daily struggles, the highs, the lows, the WORK that is involved in living with this disease. I've seen the emotional burden. I have watched him cry when his own daughter was diagnosed at the young age of seven. I saw the misplaced guilt that consumed him; the absolute devastation that he knew what she would live with.
But, I have also witnessed his strength, perseverance...his spirit. I have watched him graduate from medical and graduate school without one accommodation for his diabetes. I have watched him work inhumane hours during residency...saving patients' lives all while his blood sugar was in the 200's or 300's at times. I have seen him sit and sweat while he quickly treats a low in order to get back to work. I have seen the syringes, the thousands of strips, the pump and dexcom changes. I have witnessed bravery and triumph. I have watched him travel desolate places. I have seen him become the most amazing father my children could ever have asked for. I have watched him become a hero to my Type 1 daughter. I have seen him LIVE with Type 1.
Lately, I have seen his hope. For many years he was hopeless. He had been promised a cure in "5-10 years" at diagnosis. We've all been promised that. And, it did not come. A horrible feeling to realize that there is no end in site. This disease is so consuming. He continued to live and thrive, but I remember my frustration when my daughter was diagnosed and I looked so desperately for that cure. I combed the research and would excitedly share possibilities with him. He did not share my excitement. He had already lived through the disappointed and acceptance that a cure was not here.
But, lately his hope is back. He once again believes there may be a cure. But, more importantly, he believes for the first time that there will be a radical change in his life. I will never forget his excitement and absolute idolization of Ed Damiano and his bionic pancreas. It has given him motivation, and the belief that one day soon things will be better, not just for him but for Jessica and so many others too.
He is working harder then I have ever seen before. Eating healthy, exercising, losing weight. He excitedly texted me earlier this week...his A1c was 6.8---under 7 for the first time in awhile. I could hear the pride. He was so excited. I watched him open the envelope from his endo with his lab results. "Here are the results of your recent tests. The statin has worked very nicely. Please stay on it." SERIOUSLY???? That is it???? No mention of his A1c which had been over 7 and is now 6.8...no acknowledgment of any of the work that had gone into these numbers. I was disgusted. Furious. He was not. He spent years looking to his health care provider for support. Recently he realized it would never be found there. But, he has found it. In the form of Children With Diabetes and the DOC. He feels connected for the first time...he no longer feels alone. I watch his happiness every time he talks to the adults with T1 that he has met. They are his support. They are what he was always looking for.
This weekend marks a twenty-five year journey. The battle of one man against a ruthless disease. It marks a victory. He stands strong with no complications and living an incredibly full and happy life. He symbolizes hope....what I hope for my T1D daughter, and all those living with T1D. Some of it is luck...I have seen those who have worked so hard still develop complications; some of it is being born in the right time and place...so many still die without access to insulin even today; but a huge part of it is work. His work. And, that is what we will celebrate this weekend. Twenty-five years of hard work is worth a celebration.