I have come to the conclusion that once you are diagnosed with Type 1 diabetes you are no longer able to travel light. Of course I base this on being the mom to a Type 1 kiddo and being married to one. But, let's face it...who really does the "packing" in life. If we represent most families I'd have to go with the answer: "The MOM!"
As we have traveled along life's road over the past not quite 1 and 1/2 years since Jess was diagnosed, and specifically in the four months since we have been lucky enough to have insulin pumps, I feel like I have gone back to the days with infant twins. Gone is the milestone we had finally arrived at where we could just throw a few things in the car and be off for the day. Wherever we travel these days, backpacks, coolers, and supplies follow. Now, anyone who knows me knows that I am the true girl scout who tries to "always be prepared." So, I am not saying everyone should or does live the way I do. But, needless to say I think most Type 1's would agree---there is a lot of sh*t to travel with!
Example A: Jess started at a new school. Courtney started at a new school as well. We got Courtney a few school supplies, gave her a kiss on the forehead and wished her luck. For Jessica, we met with the nurse. We met with the teacher. We talked with the principle. We met with the cafeteria manager. We made up a sub form with a picture of Jess and all of her information in case there was an unexpected substitute teacher, we made sure the bus driver knew she had Type 1 and could eat on the bus, we wrote a letter to the parents of her classmates asking (begging?) them to let us know when snacks would be coming into the classroom so that Jess could know the carb information and participate. We spent hours researching the carb information for school lunch items. We helped Jess pick out snacks to have in the classroom in case the dreaded treats came in without carb information. We printed out information for her teacher explaining what Type 1 diabetes is (as in it is not Type 2 diabetes...why do they even have the same name???). And, seriously...the list went on and on. It certainly felt like a heavy load to conquer. And, Jess arrives at school every day carrying the heaver burden on managing it day by day on her own at the young age of 8. And, did I mention the bag she must carry???
Example B: Packing for a trip with Type 1 diabetes. And, I thought this was hard...
Example C: Packing for a trip with Type 1 diabetes and two people on pumps. Seriously...this is crazy. Each time you hope the plane has enough room for all the carry-on bags one must have for all of their supplies: Insulin vials and syringes, alcohol pads, spare pumps, spare cartridges, spare sites, meter, strips, batteries, lancets, ketone meter, ketone strips, sweets for lows, snacks, sick day guidelines, travel letter, EMLA cream, and I'm sure I'm forgetting something! Not to mention the fact that apparently the pumps can't go through the xray machines, so each time I must prepare my 8 year old very shy daughter that there may be a pat down.
I could give examples D-Z, but the point is all the same. The balance is in carrying the heavy load while maintaining the enjoyment of life and the freedom and care-free days of childhood. I am thankful I can do this for Jessica now. Traveling through life may not be as uninhibited and joyful as it once was for her, but I am still able to do the bulk of the "packing" for her. I dread the day when she realizes the full burden of this disease. My hope is that by then we will have repeatedly taught her that diabetes can not stop her. It may take asking how she will do something, but she can still do it.
But, I have to admit sometimes I just have big time "I hate diabetes days." Today is one of them. We need a cure. I will borrow from my true idol Kerri Sparling's website and remind people "just because these children don't look sick does not mean they don't deserve a cure." Insulin and pumps are life saving miracles, but they are not a cure. Together we must all work hard to advocate and fund raise. And, until then I remain ever thankful for those in my life that "get it."