Type 1 diabetes is manageable most of the time. Then a day like yesterday happens. I needed to get the kids to school and meet some deadlines before grabbing them and getting them to my parents for a much needed date weekend with Rae. We don’t really have babysitters, since Lucy’s disease is complicated. So there I am in the car on the way to meet up with mom to take the girls and I realize that I left the extra pods (medicine dispensing devices) on the kitchen counter. How often do parents leave something at home? It certainly happens. If you are not struggling to get by, you probably plan a quick trip to Target. But we can’t do that for Lucy’s medical supplies. So I call my mom and we arrange to meet the next morning. I can drive back down an hour and a half again and hand it over.
We meet up with friends to go out to dinner in DC. We laugh and talk in complete paragraphs. We have conversations where we can swear or even talk about sex without spelling things out. We have a great night celebrating a good friend. We head to the metro and feel this great reconnection ready to head home. I am looking forward to sleeping in the next day and getting some extra rest. Then I get a message from my mom. The device expired early and needs to be changed within 5 hours. I had no choice but to metro and then drive back to Baltimore from DC, grab the supplies from the kitchen and get back on the road at 11pm and drive down to Richmond so I could change her pod and make sure she gets the medication that is necessary to keep her healthy and out of the hospital.
Most days we keep it together and it is a lot – calls and texts from teachers with questions or clarifications, cajoling and negotiating to get her to eat dinner because we can’t do the “if you don’t want to eat, then don’t” when she could go too low and not wake up, getting up multiple times at night to check her number – but we do it. It is our life. It is our reality. Then a day like yesterday happens.
We manage Lucy’s disease. We do everything we have to because she is our sweet girl and there is nothing more important than the health and happiness of our girls. We sacrifice sleep. We argue with medical device companies who forget to send the regularly scheduled shipment. We juggle our schedules for pod malfunctions and doctor’s appointments during work days. We do what we have to do and we will always do what we have to do. But after a night like last night, I have to say out loud and admit that it is hard.
I have to be honest that I lay awake at night worrying sometimes about what her life will be like. I have a night where I accidentally snooze the 2am alarm where I am supposed to check her number and I wake up at 5am in abject terror that she could be too low and for a few seconds until I look at her monitor I am scared that by letting myself sleep a few extra hours my girl could be hurt. Like so many parents, I am multitasking and running and just getting by each day with the myriad of responsibilities, but this disease adds a whole other incredibly difficult layer. We make it happen, but damn it is hard. So we are trying to do something about it. We are raising money to support finding a cure. We are participating in the JRDF One Walk.
A family is a team. We are on Team Catie and Team Lucy. Being their cheerleaders, their coaches and their teammates is the most incredible thing I will ever get to do. But we need you to be on our team, too. We need you to help us find a cure – to help our sweet, sassy, eldest and the many kids with Type 1 diabetes – and their parents.
You can join our team – either in Baltimore on April 16th or in Washington, DC on June 5th. What does that mean? Go to the page for the even that you can attend with us and click “join the team”. Even if you are not able to be there on the day, you can help. Make a donation, however large or small you are able to make and help fund ongoing research – the research that will eventually result in a cure. Donations can be made to Team Lucy for the Baltimore or DC event.
We are all trying to pay the bills and there are many worthy causes, but I hope that you will support Team Lucy. Whether you can give $5, $50 or $500, you are making a difference in the life of our sweet girl and millions of other children and their families.
- Team Lucy – Baltimore: http://www2.jdrf.org/site/TR?fr_id=6087&pg=personal&px=9159583.
- Team Lucy – DC: http://www2.jdrf.org/site/TR?fr_id=6089&pg=personal&px=9159583.