I have this very vivid memory of bringing our youngest daughter home after her long post-diagnosis hospital stay. Our lives were a whirlwind of fear mixed with learning with a ton load of grief. Through all of those emotions, a little bit of my father’s daughter reared up and on one manic recovery day, I paused long enough to make a vow; Type One Diabetes was not going to hold our daughter back.
And it hasn’t.
Nor will it for our oldest daughter. Not then. Not now. Not ever.
To underscore this point, our oldest daughter wrote an essay and applied for a trip abroad as an ambassador for the University of Michigan Mott Children’s Hospital Teen Advisory Council as a member of ICAN (International Children’s Advisory Network) for the 2nd Annual ICAN Summit to help improve the lives of all children within the medical community.
After months of planning and preparation, the big day finally arrived and our daughter flew from our home in Michigan to Paris, France. As her chaperone (mom perk!), I was happily able to go along with her. Our first hurdle was navigating international airport security with all of the necessary medical equipment and gear. To mitigate loss risk, we packed insulin, pump and CGM supplies in separate carry-on and checked baggage. We also packed a doctor’s letter as well as airline security rules about traveling with medical concerns. Maybe it was Newton’s law but it seemed just by virtue of preparedness, everything went smoothly. We breezed through Paris customs and blissfully spent a day as regular tourists.
Our next perceived challenge was transferring from France to Spain via another plane. Once again, preparedness seemed to eliminate any obstacles and security went as smooth as could be.
After a few more days, our first (and really ONLY) issue came to light at around 1:00 a.m. on a Sunday, the night before the official summit kick-off. We had been to a concert venue earlier in the evening, danced and then, walked several miles back to our hotel. Somewhere along the journey, oldest daughter lost her lancing device. In Barcelona, ‘Pharmacy’ is atypical, stocking a variety of non-medical goods and not even readily available like the American-style CVS or Walgreens. We knew we had to troubleshoot independently. Just as I was starting to fret about how to fix the situation, a lightbulb went off. Why not work through this scenario using our teenager as the lead?
I calmly looked at her and asked, “How would YOU handle this situation?”
With big eyes, she looked tearfully back at me and asked, “What do you mean?”
“Well”, I paused and gave her an encouraging nod. “This very same situation could have easily happened back at home or at school or one day soon, at college. How would you fix it? What would you do?”
“I would call One-Touch”, she replied hesitantly. “And maybe they could send me one?”
“Ok! Let’s try.” I nodded with an encouraging smile.
Oldest daughter looked at her smartphone and found the US One Touch hotline. Placing a call, she immediately connected to an on-call operator. After a couple of moments of explaining the situation, she was able to understand that while the US One Touch company would love to help, they cannot send US medical devices overseas. Instead, One Touch agreed to send a new lancing device to her home, which while helpful after we returned, did not help the situation she was currently in. A few more attempts to reach the international One Touch hotline did not prove to be fruitful. At this point, it was close to 2:00 a.m., so we agreed to manually poke a fingertip with a lancet (Which can I just share how sad that is? My heart hurt for her sweet fingers!) so we could both get some much needed rest .
The next day, we went to breakfast and having to once again, manually poke her fingertip, our family-style breakfast table included several of the ICAN conference attendees. One inquired about where her lancing device was. Explaining tentatively of what had happened (which was quite difficult as she tends to be somewhat conservative of opening up in front of adults); our oldest daughter shared her new idea about heading over to the neighboring hospital to see if a lancing device could be procured. She spoke quietly and I could see that she was uncomfortable with the attention on what she felt like was a problem that she had created. Even though accidents happen, she took it to heart that the lancing device had been her responsibility.
However, through her openness, a rainbow appeared. That first conversation sparked another conversation about one of the researchers that was in attendance at the conference. Certainly that person might have a connection at the hospital in Endocrinology that might be able to help.
An hour later, oldest daughter found the researcher, agreed to meet in the hospital and was on her way to getting a new lancing device.
Later that day when we were able to have a break in the day, she came over and gave me a hug. Thrilled with her new lancing device, she showed off her healing fingers. “Look, no more redness. How cool is that? She said with a grin. “You know mom, I just proved that I can do this. I can go anywhere and have anything happen and I won’t fall apart. I am so proud of myself! “
Teary-eyed, all I could do was offer a hug.
As she hugged me back she quietly said, “Take that Diabetes Monster.” With a victorious smile, she ran off to her next summit adventure.
The rest of the summit went off without a hitch. Oldest flourished in the international environment. She reconnected with friends, made new friends and revealed in the many learning opportunities. T1D stayed quietly in the background, never daring to upstage her so that truly, she could be a kid first.
Upon arriving home, one of my dear friends asked me if I thought oldest daughter could have made the trip alone. I'm not so sure she could have but I am certain that she can (and perhaps someday will). She has an air of confidence now and above all, she believes in herself.