Three years ago March 7 our life changed forever. Three years ago March 7, my baby was deathly ill, three years ago we were flown out of Walla Walla in a Medi-vac, three years ago and I still remember the smells, I can still hear the quiet murmur of the flight nurses, the calm voice of the pilot and feel the vibration of the rotors. I can still feel the tears streaming down my cheeks, see the face of the doctor at Sacred Heart trying to explain to me everything that was happening his face swimming in and out of focus with each onslaught.
Welcome 2017! I hope you all had a fabulous holiday season we sure did. Everyone was healthy and happy. Unfortunately, as I read other parent’s stories about their less than enjoyable holidays, I feel compelled to write about T1 being an autoimmune disorder- and what that means for so many of us.
Having an autoimmune disease means that any viral or bacterial infection going around will most likely infect our T1 kids and proceed to slam them. It means that we must be extra diligent about hand washing, avoiding high traffic areas such as indoor playgrounds, and yes even staying away from family and friends over the holiday season. It also means that family and friends must be sensitive to the difficulties of having an autoimmune disorder and realize that what may seem like "no big deal" to them, is in fact a huge deal to the T1 family. For example, there was one family that traveled 5 hours to visit their distant relatives only to discover that some of the children had the flu-a potentially deadly infection for a T1- and no one bothered to send a quick text message or make a simple phone call saying “Hey John-Doh threw up this morning or Jane Doh has a fever, just wanted to give you a heads up”. The family with the T1 child reached their destination turned right back around and headed home, to which I say “Bravo” for being so smart about it, and “BOO!!!” to the inconsiderate family members who didn’t let them know in advance. It is so unfair for families like ours to be ambushed in situations like these.
I am begging you to remember that the cold virus your child has may last two or three days, but if our T1’s catch it --which they most likely will, given their immune systems are practically worthless-- it inevitably means a hospital visit or worse. As for the flu-shot, GET IT! I understand the stigma around it, and the idea that if we treat everything with antibiotics or vaccinations the nasty viruses out there will become immune but that is utter foolishness…those viruses are constantly changing, despite vaccinations not because of them. Get that shot! If not for yourself, for your T1 child and if not for your child then your niece, nephew, grandson or daughter, or your friend’s child. If you have no T1 relatives or friends, keep your sick children home even if you are going stir crazy for the sake of someone else’s child.
I am grateful that most of our extended family and friends have finally started to understand this, but it took a long while and I am not going to lie there was a bit of a learning curve but; I think we are finally all on the same page. I understand how hard it is to be stuck at home, I really do…I have been desperately trying to keep my T1 entertained and it is exhausting. BUT, but, I would much rather be exhausted at home, than exhausted in a hospital room as he fights yet another infection that could have been avoided.
The travel bug never bit me. I’m not really sure why I never had much desire to see the world, or even my country for that matter, but I always felt fulfilled by a short drive to the magnificent New Jersey beaches, a quick train to one of the greatest cities in the world, New York, or simply in my own peaceful backyard. (Did I mention I don’t like to fly?) However, in recent years, I have said “YES” to several travel opportunities that have come my way, and it has been quite exciting and eye-opening. Perhaps it is because my children are now grown and independent, or that my parents are not needy, or that I have the time, or that I realize I don’t know how much longer I’ll be fit and active, or simply that there’s just no reason to say no!
In the past few years, I have said “YES” to New Orleans JazzFest (bucket list), Las Vegas (a friend’s birthday weekend), Mexico (parent’s anniversary celebration), Caribbean cruise (family vacation with family friends), Italy (son studied abroad), Israel (daughter studied abroad), and tagged on to my husband’s business trips to London, Amsterdam, Barcelona, Ibiza, Lisbon, and Paris.
Whether with my family and/or friends, I’ve hiked beautiful mountains, biked around cities, visited magnificent beaches, listened to inspiring live music, explored foreign neighborhoods, eaten amazing food everywhere, and so so so much more!
What many of you may not know is what goes into traveling with T1D. It’s a lot of work! First, there’s all the preparation that goes into packing for the trip. Besides figuring out what clothing and shoes are required and the regular essentials that everybody needs, there are so many medical supplies to bring… insulin vials X3 (in case one breaks), infusion sets and reservoirs (twice the amount just in case), test strips and lancets (twice the amount just in case), tons of glucose tablets (just in case), glucagon (just in case), long-acting insulin (just in case), syringes (just in case), spare meter and pump (you never know), and that’s just off the top of my head. In case, in case, in case. I don’t want to be in a strange place and have to start looking for supplies, which might not only be difficult to find, but also who wants to waste precious vacation time doing THAT!
Then of course there’s dealing with airport security regarding everything from traveling with needles to going through security wearing an insulin pump and CGM. Sometimes I disclose it up front and sometimes I test the system haha. Sometimes I get stopped and scrutinized, and sometimes I sail right through. I have had to change a clogged infusion or cranky CGM in an airport bathroom. I’ve needed more glucose tablets in the overhead compartment when we are confined to our seats. When traveling through different time zones I have to work closely with my doctor on how to adjust my pump settings. And my bulky medicine bag and emergency food (in case we are delayed), which always stay with me, take up most of my one-allowed carry-on luggage.
These are just some of the challenges that I face. BUT I don’t let it get in the way. It’s just what I do, and it’s never too late to say YES!
Abby and her husband, Mike, live in New Jersey and they are the parents of 23-year-old twins. She has worked in several fields including Public Relations, Corporate Special Events, and Wardrobe and Image Consulting. She is an active volunteer for the Foundation for Diabetes Research where she also serves on its Board of Directors. Abby was diagnosed with T1D in 1973 at age 8.
What has diabetes taught me?? Everything!
It was absolutely the worst day of my life. She almost died. I held her in my arms and felt her little body slipping away. I cried more tears than I ever knew possible.
It taught me about death. It taught me about sadness, helplessness, hope and faith and it taught me about LIFE!! I walked out of the hospital a week later with my baby. She was alive and healthy.
You see a lot when moping around a children's hospital for a week. I saw countless children who weren't going to get to go home. I saw their hair beginning to thin or completely gone, I watched families pray in the hospital chapel. I saw a mom sobbing over her child who had drown in a ditch a month earlier and still on a ventilator but they held out hope, I peeked through a window and watched a little boy who was maybe 4 learn to walk with prosthetic legs. And I got to take my baby home. She was just a little sweeter than before. Diabetes is our hell, but I've seen that sometimes other people's hells are worse than mine.
I've watched my child grow into this beautiful little girl who is full of life and spunk. She loves to dance and can feel the music deep in her soul. She's got these long gorgeous locks and olive skin, and big brown eyes that can show you the world. She is nothing short of amazing!!! How I got lucky enough to be her mama I will never know, but I am beyond grateful for that girl. She's taught me everything I've ever needed to know about life.
Maybe diabetes didn't teach me anything? Maybe life taught me. Life teaches us things we never want to know and it teaches us things we never knew we loved. You see I never planned on being a super awesome T1D mom, but you know that saying about "if the boot fits"....well I laced that sucker up and wore it!
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