Two years ago Friday. This is an anniversary that will never be joyful or fun. It is the day that stole my seven year old's carefree childhood. It is a day that has forever changed not only her, but our whole family. I try to be the optimist that I usually am and turn it into a celebration of Jessica's good health. I am so proud of so many things.
I am so proud of Jessica--words can never express the awe I have for her. Every day there are so many examples of how she has not let diabetes win. I watch her excel at school, on the soccer field, at piano. I watch as she decides that "Taking Diabetes to School" really isn't the best thing to read to your fourth grade class, and she designs her own power point presentation instead. I laugh as she shows me the slide of Grumpy, the Snow White dwarf, that she made to describe to the class how she feels when her blood sugar is high. I watch as, on her own, she approaches her principal to ask to make an announcement to the whole school about a JDRF fundraiser that we are having. And then I watch as she practices over and over what she is going to say in front of these 600+ people. I am, quite simply, amazed by her. There are bad days. There are days when she hates diabetes. There are days when she is 300 and starving and simply cannot handle the thought of another string cheese or meat. There are days when she tells me "I just want a break, I can't believe I am going to have this the rest of my life." Yet she is resilient.
I am so proud of Courtney, Jessica's sister. She is truly the unsung hero. She looks after Jessica when I can't, even though I have told her again and again that it is not her job--she is only a child and should never feel responsible for Jessica. But, she does not waver. Her pancreas works, yet our whole family lives as though ours do not. She stands by as Jessica gets the bulk of our attention. As much as we try to balance this, site changes, counting carbs, and all the many diabetes tasks take a huge amount of time. She worries she too will get diabetes, yet tells me "mom, I see how well you and daddy take care of Jessica, so I know it would be ok, you would take care of me too." She cheers Jessica up when she is down. She takes Jessica into the world of make believe where diabetes is forgotten. I am forever thankful not that Jessica has a twin, but that she has Courtney as a twin.
I am so proud of my husband. As hard as this is for me, I can only imagine that in some ways it is harder for him. He intimately knows what Jessica's future holds. He has been doing it 22 years. One of the saddest things he ever told me was that he has stopped believing there will be a cure. When he was first diagnosed they told him five years, then it was ten. It simply got too painful to keep hoping. I know it breaks his heart that Jessica has this now too. Yet, he has tried so hard to make sure she never feels alone. When she wanted a pump, he got one first to lead the way for her. He puts up with all the insensitive comments about "Oh, you have it too, I guess that is why Jessica has diabetes." People don't mean to be insensitive; what that comment really means is "Thank God my child will likely not get this...her dad has it so that is why this has happened to her." But, I am sure it hurts. He is a pillar of strength and I cannot imagine going through this journey without him. He is my best friend, soul mate, and biggest source of support.
I am so proud of myself. I have managed to balance this with work and all my other responsibilities. This is hands down the hardest thing I have ever done. Med school, residency with twins? A cake walk compared to this. Those things had an end. Med school ended. After working 36 hours as a resident, the shift ended and a short rest could be taken. Infant twins grew up and learned to sleep through the night. Diabetes has no end. It is a 24/7 job. And, as her mom, there are so many emotions that go along with it. When Jessica tells me "I hate diabetes" she dumps it and walks away...it is I that am left with tears in my eyes and filled with guilt that she must live with this. And, the bigger guilt is that she is the one that must live with it the rest of her life. She will grow up, and although I will always worry and try to help her, in the end it is her disease and she must carry it. I hope I am teaching her the tools she will need. I hope that I am instilling in her that there will always be a Team Jessica. I hope I am teaching her to celebrate little victories and to never forget the sheer joy there is to be found in life.
I have learned many things these two years. It is hard to believe it has only been two years. So much of life feels as though it passes "in the blink of an eye." This does not. It has been a very long two years.
As with most crises in life, support wanes with time. Yet, in doing so, it also has shown us the rocks in our life. We are so thankful for those that have continued to support us and carry this burden with us. Our good friends who continue to reach out and ask how we are, who have learned about diabetes with us. I am forever thankful to my mom and dad who have walked every step of this journey with us.
And, I have learned I must try to deal with my disappointments and anger. People are only human after all, and they mean no harm. But, I am tired of explaining the difference between Type 1 and Type 2. No, Jessica can not take pills. No, she did not get this solely because her dad has it. No, she did not used to be fat. No, she is not able to get rid of it like your Aunt did. No, it is not easy now that she is on the pump. It is easier, but why don't you try taking her home for a couple of days and see how "easy" it is? No, we do not need to "loosen up" and not be so anal with this disease. Highs and lows feel like shit, and DKA is always looming in the distance...only a mere four hours or so away. Long term complications rarely cross our mind, yet they are there too. Yes, Jessica CAN eat anything. No, you are not being helpful by getting her a sugar-free cake, or serving only carb-free food. She needs carbs to live, just like you or I. I wish I could just post a sticky note on her that says "If I want it then I have to know the carbs in it." Yes, she CAN have candy----it is labeled with the carbs!
In so many ways things are better. We have an amazing diabetes provider for Jessica, which has made such a huge difference. Our way of life for us is mostly our new normal. None of us like it, but we do it and it is easier now. Counting carbs, site changes, highs lows....they are still so unpleasant, but we are used to them. We are closer as a family then we ever were before Jessica was diagnosed. Diabetes has led us to many new people and inspirational children. It has shown us our true friends. Diabetes has made Jessica stronger, more resilient, and healthier. It has taught us to celebrate the little victories, to never give up.
Two years. I still wait for the day that we can celebrate the anniversaries of how long it has been SINCE Jessica has had diabetes. Scientists--I'm counting on you.