Stella was diagnosed on 7/30/10. We left the hospital 4 days later, climbed into our house, rolled up our welcome mats, closed our blinds, locked our doors, and hoisted the weight of this disease onto our shoulders. It was ours. We couldn’t share it with anyone. We didn’t know anybody else with type 1. We didn’t trust anyone else with our daughter. And no one we knew (including us) understood the severity of this diagnosis. We were alone. Even our regular Doctors didn’t know the difference between type 1 or type 2. And if we couldn’t trust our Doctors to understand our issues, our daughter, our questions, our disease, then who could we trust?
We were never social butterflies, always preferring to hang out with our family and watch a movie on a Friday night. At the time, I was working 2 jobs and shooting photography almost every weekend, leaving me very little free time. We don’t have a babysitter, and on only a couple of occasions have we ever had to even leave our kids with family while we went out. Our first date in 3 or 4 years was the week before Stella’s diagnosis, and it’s a good thing we weren’t used to going out often, because after diagnosis, we were sure we’d never leave the house again.
When we got home from the hospital, we knew nothing about the disease, except that our daughter could die if we screwed something up. Yes, while we were in the hospital, we had meetings with the Endo, a nutritionist, a diabetes educator, nurses, etc. I took notes as much as I could. I tried to pay attention and focus. and then my daughter would need an injection, and that would require 2 nurses to hold her down while she SCREAMED at the top of her lungs and cried. And all I could remember from the meeting was “I’m never going to be able to do this, how can they send us home?”
When we left the hospital, I was in a daze. I knew less about diabetes then before, because obviously, everything I knew before was wrong. This world was thrust upon us, and life as we knew it ended. We couldn’t even fathom going out to eat anymore. The next 6 months were pretty dark times for us. We did a couple of things with friends and families, but we really circled the wagons. No one understood what we were going through. No one had any concept how hard this was. No one knew the tired. The exhaustion. The worry. The math. The blood. The smell of insulin on your fingers. The misconceptions. No one.
And then, in December, we learned about DAD’s. We started doing some research on these dogs, as both my wife and I are huge animal people. And that research led us to Canine Hope, and Crystal and Johanna. In January of 2011, a full 6 months after our daughter’s diagnosis, we met our first type 1 diabetic. Johanna is an adult type 1 that works with Crystal. She helps train the dogs. (as a matter of fact, all dogs eventually go through her house to get “real time diabetic” training). Here, right in front of me were 2 people that understood. That had been working with families just like mine. One of those people had been living with diabetes since she was a child. We barraged them with questions, both dog and diabetic related. After they left, I was sure they thought we were idiots, and probably surprised that our daughter was still alive.
It was through that meeting, and signing up with them, that led me to start our Facebook page, A Guardian Angel for Stella. It was our foray into fundraising for our DAD. It wound up being a turning point for us. The convergence of Facebook and getting involved with the Canine Hope group was life altering. Facebook introduced us to the DOC (diabetic online community) and Canine Hope introduced us to real, local families that had kids the same age as Stella, living through the same things we were.
I am amazed at how much we don’t learn from our Endo’s. How little they actually know when it comes to day to day life with a type 1 child. Now in all fairness, many Endo’s have children that are type 1, or a family member, and that was their inspiration for following the path. But in general, they have a lot of info on basal rates and bolusing, A1C results, honeymooning periods, and other scientifically based issues with diabetes, especially in regards to type 2, but if you want to know how to handle a soccer game, pizza parties, Chinese food take-out, or an idiotic school board, talk to the parent of a type 1. Some endo’s even tell their families there is no need to check BS’s over night. Seriously?!?
How amazing is the DOC? Or our Canine Hope family? Just knowing that when my wife or I are up at 3 am checking our daughter, and we have an issue, we could go on Facebook and type in a question, or send a text, and get an immediate response. Because they are up too. Just like us. And someone has had the exact same issue I am dealing with, and knows what to do. And they care. And will follow up and ask about it the next day.
I can’t tell you how much our lives have changed for the better because of the families that we have met through all of this. Just knowing that they understand. That they “get it”. That they know what 52 + 12 + 35/9 means. That the number 25 is scary, the number 415 is scary, but that ultimately they are just numbers, not judgements. That 100 gets a woohoo! And an A1C of 10 isn’t a reflection of you as a parent, but that does show some room for improvement.
We, as parents of diabetics, beat ourselves up a lot. We miscalculate carbs, we dose with the wrong insulin, we question everything we have done when there is a random 350, we worry, we worry, and we worry some more, we are tired, and we are scared. To know that there is another person out there, even just one, that get’s that is amazing. But that there is a lot of us? All walking around like extras on the Walking Dead? I’m sorry we all have this disease in common, but I thank my lucky stars that we are all in this together. And then to meet and know adults that are living successfully, with families, careers, all their limbs, that we can look to, and tell our children honestly, “you are going to be okay, and yes you can do ANYTHING”, well, that is amazing, and so reassuring for a parent of a type 1.
To know there are people out there that understand the difference between “controlled” and “managed”, that this isn’t because we fed our child twinkies or put Coke in her sippy cup, to know that we can get frozen yogurt, we can have birthday cake, and yes, she CAN eat that, that even though they are cute and look healthy, this is, MOST DEFINATELY, the bad kind of beeties is like having a huge weight lifted off our shoulders. Even close family have no idea what this is like. To just be able to sit down, and have someone say “I know” and realize that, yes, they truly DO know is huge.
I love you all, you all are amazingly important to me. I hope that this blog, and our Facebook page provide some insight, a little education, some humor. It is my little effort to give back to a community that I get SO much from.
We have gone from a family that never wanted to leave the house, to a family willing to tackle anything. And we have lots of type 1 families that do the exact same thing. if something comes up that we don’t know how to handle, we have a smart phone that taps right into the pulse of the DOC. We can get an answer quick. Shoot, If I was denied service at a restaurant because of a dog, I am one Facebook post away from having 15 dogs and handlers show up in 30 minutes. 🙂 Never ceases to amaze me, but always reassures me.
And to Crystal and Johanna, thank you. I don’t know that you will ever truly understand how much you mean to us. What you do for people, the service you provide, isn’t just about dogs. It isn’t just about diabetes. It’s about keeping an eye out for one another. It’s about caring for others. It’s about knowing we aren’t alone. It’s about family. It’s about our kids knowing they are NORMAL. Thank you. We love you.
And no, you don’t need to be a member of Canine Hope, or have a DAD. Just reach out. Introduce yourself. Find a group on Facebook. There are groups for MODS, DODs, DAD’s, Adult type 1’s, type 2’s, any combination of age/sex/diabetes/religion/ethnicity, ah, you get the drift. There are support groups, events and parent coffees hosted by JDRF, the ADA, and numerous other organizations. Don’t be afraid. You don’t have to do this by yourself. We are all here to help. You are not alone.