There was a point in my life when I found it normal to regularly visit hospitals. Regular check ups, vaccines, advice etc. That all changed the day we lost Aspen. I had put all my trust and confidence in those professionals and we still left Salt Lake city without our daughter. Now I'm not saying it's their fault. The extent of Aspen's injuries and how her body handled them were ultimately what caused her little heart to quit beating. Regardless of what people did or didn't do is not what I want to talk about. It was the trauma of the entire situation that left it's mark on me. This was in 2003 when the internet still wasn't a big thing. I didn't have access to any information to make informed choices in what we allowed the doctors and nurses to do. My only answer was "yes" yes you can do that procedure, yes you can use that drug, yes, yes, yes. This is a situation that plays in my head over and over again. Did I make the right choices? Were they really in Aspen's best interest? Would I still make those same decisions now that I have the world at my fingertips? I'm not entirely sure and that is pretty tough on my heart. Having survived that trauma and making it out alive, I often reflect on my decision making skills as a young parent. Because I have those thoughts playing in my in my head. Every time I step foot in a hospital, I make sure that my questions are being answered, I relay my thoughts out loud and not even saline gets put into my children without my consent and my full confidence as to why it's happening. My loss of Aspen has me challenging doctors with questions and if I don't agree, I'm not that quiet girl that lets them do anything they want. The trauma of my past has COMPLETLY CHANGED who I am at my core (especially when it comes to hospitals and support staff) I can see the annoyance on their faces as I challenge and question. I have had scare tactics used so that I fall in line "your child could die if you don't..." It's in those moments that I have had to look those providers in the eye and say " I have already buried a child, I don't make my decisions lightly or with research. Please don't attempt to scare me to do what you because it won't work" This pretty much gut checks their bedside manner and they become more informative for me. That's all I want. To be 100% confident in the health decisions for my babies. I refuse to have another moment that I look back on and wonder "what if".
This leads me to where I sit right now. My oldest daughter living with Type 1 Diabetes. For those of you that follow these blogs, you know we found out she was diabetic through yet another traumatic hospital visit. Type 1 Diabetes is not something we can recover from. It is now a part of who my daughter is. She cannot merely "eat better and exercise" to get better. Her body is stopping the production of insulin. Without insulin, she would die. Now this puts my heart in vice grip. I learned in those moments that we would forever be dependent on hospitals, doctors, insurance companies and big pharma. To this day, this realization makes my cry. It makes my head pound and rips apart my heart that I cannot raise my daughter without depending on those people. I have to rely on the very people I distrust the most in this world. We are now a case number and there is nothing I can do to change it. I literally want to throw up writing this. I have to learn to trust, I have to learn to keep my physical body calm every time we walk into the hospital. I have to learn to keep my anger at bay when talking to insurance companies and pharmacies. I have to learn to not be chained by my fears.
We were recently approached by a research center to take part in a study on an auto immune drug to see if it could prolong what life my daughters pancreas has left. The pancreas is what produces insulin. This specific drug has been on the market for years. They believe the effects will also help T1D. If we take part we may get the drug or we may get placebo. If it works, this could be ground breaking for future Type 1 Diabetics. It's a two year study that will require a lot from Mekka. Lots of visits, lots of pokes, a billion tests. My gut reaction to them was to scream NO! I already have enough of you people in my life, why should I invite more in?! Before I gave my answer, James and I decided to talk to Mekka about it. After all it's her body and we believe she is intelligent and could help us decide what to do with this request. Mekka's first response was "if it doesn't kill me, I will do it" To which I didn't quite know how to respond. Others take the drug but there are always those side effects, I can gauruntee her nothing. Many discussions later I had to give the research center and their docs our answer. I once again approached Mekka and asked her why she wanted to part-take in this study. Her response was simple. "I could help others that become Type 1 Diabetics down the road. they need to study it to see if it works." My jaw hit the floor. My little girls heart of gold could not have shined any brighter in that moment. She understood that it may or may not help her BUT doing this has the potential to help many others down the road. My 12 year old who's world got turned up side down February 11, 2017 was teaching me a lesson in courage. It was only in that moment did I reveal that the study was in Seattle and we would have to travel from Montana to Seattle a lot. Her simple words proved to me that she was all in for the right reasons. It's not the travel, it's not fun and games. It's about changing the future for other Type 1 Diabetics. All my negative thoughts melted right then. I didn't need to walk in fear any longer. Under this care we were going to be watched extremely close. We will have a partnership with some of the leading research doctors in the country. We have an opportunity to make an impact and it took my 12 year old daughter to change the view with which I was seeing through. She took away my vision from the past, put a new prescription over my eyes and suddenly everything came into focus. We start this new adventure very soon and I will not be flying in fear but with a renewed purpose and a heart to make an impact. Thank you my dear sweet daughter for helping me face the scars of my past. Together we will take flight knowing that fear is no longer part of our story.