You know, I don’t think bright-eyed bride & grooms as a whole have any idea what the heck they are really saying as they hold hands and repeat the words “For Better or For Worse.”
I betcha if that was my status on facebook many of you would be hitting “like” right now.
Type 1 diabetes has redefined just how challenging life can really be. Currently, we are in the midst of a potential asthma diagnosis which can really screw up the Type 1 even further.
We’ve been working with our children’s hospital to put our son on an insulin pump they don’t quite agree with but what we think is best. In the coming weeks Julian and I will once again hook ourselves up to the insulin pump first using saline to learn everything we need to know, press a magic button on a screen that will literally staple the device to Brayden and then trust that everything will be okay when in reality we have no idea what the heck we are doing and are just hoping for the best. Did I mention we spent Halloween in the emergency room for 6 hours flushing ketones?
If you are reading this & you are a friend or family member of someone who lives with Type 1 in their family, you may be thinking to yourself “Geeze, why do all these people sound the same?! They are ALWAYS complaining about this darn disease!!”
Let’s switch gears for a moment as I take you on a short little journey and hopefully explain where we Type 1 families are coming from…
Our honeymoon was in Costa Rica. We thought it would be fun to do a zip-lining tour in the rainforest. Originally, the image I had in my head was little wood platforms and zipping along from tree to tree.
The photograph above is taken from the top of a firetower. We were instructed to hold onto two bicycle handles and zip across a canyon to the other side of a mountain.
At the time I was working for an agency that served families who had children with developmental disabilities. Often, the story a mother wrote about her experience having a child with disabilities compared it to planning a vacation to Italy or France, and ending up being routed to Belgium instead. It wasn’t any better or any worse than what had been planed originally, just a different experience.
I think a Type 1 Diabetes diagnosis as a parent is like thinking you are going on a trip to Disney World and ending up in Costa Rica instead. Rather than a carefully planned out magical trip, you find yourself on a wild, unpredictable ride where you are hanging on by a string and not quite sure how or when you’ll make it to the other side. The roads are bumpy, unmarked and unpaved. There are wild animals everywhere and don’t even get me started on the spiders, dude, they are prehistoric.
But like a trip with windmills rather than the Eiffel Tower, a Costa Rica-type journey has plenty of neat things to offer as well. Instead of “hakunah mattatah,” they say “Pura Vida,” which literally translates to “Pure Life.” We heard it used often when people were asked how things were going or as a general statement at the end of conversations to conclude “Hey, no worries here, life is great!” (Even if that wasn’t necessarily the case.)
So Julian and I are on a much different journey than we ever thought we’d take from the day we said “I do.” But I’m constantly reminded of why I picked him. As we got out of the car at Morristown hospital at 2am and carried our little boy into the ER so they could stick him with more needles, we looked at each other, kind of half shrugged, half laughed, gave each other a kiss and jokingly said “Happy Halloween!!”
Yes, things are tough and stressful and we don’t know where this zip line is taking us and no it doesn’t feel very secure or safe and our feet aren’t on the ground most of the time, but we’re happy. We’re grateful and we’re loving life and with all the energy and love we have, we are no longer simply holding hands and looking at each other.
Type 1 parents are working around the clock, 24/7 to keep their children healthy and alive. They may not have much time or energy to sit and stare or chat and relax. We are constantly on guard against something that could end up as the worst of the worst for any parent’s heart, but instead we’ve released our grip from anything else we ever could have dreamed as a journey and are pressing forward, swinging our children into a future that is unknown and believing with all our hearts that the journey will lead them to great things.
(and Happy Birthday to my gorgeous wonderful husband! I wouldn’t have this journey any other way)