Back CameraStella 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.

Sound familiar?

Back Camera

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.

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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.

Team Blackdogsrule

 

 

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10 Comments

  1. As a type 1 diabetic for 57 years, Stella is so blessed to have a family that is so involved. I enjoy reading your posts and am so interested in the DAD part of the care for Stella. Our first dog, a black lab-collie mix taught herself to alert to my lows. I’ve had four dogs since that time, but none of them have been able to do this. Thanks for the education that I am getting from your posts.

  2. Johanna DeGidio Reynolds

    Wow Frank, once again, you’ve got me in tears! Your family, and the others like yours, are exactly why we (all of us at Canine Hope) do what we do. I’m amazed by Stella and how far she has come in the last couple of years…that girl will conquer the world!
    I’m so glad we met you and Laurie nearly 3 years ago. Your entire family inspires me 🙂 And no, we didn’t think you were idiots when meeting you way back when! Unfortunately, we’ve seen many families feeling the same way: lost in this tumultuous new T1 world without guidance.
    The information you share with the world, newly diagnosed families, those considering DADs, and especially the “general public” (many of whom have no clue what’s involved with this disease) is HUGE!!! You, and the rest of the incredible Wisneski Clan, are changing so many lives for the better!
    We are definitely not alone

  3. Sounds EXACTLY like us! Just reading your post makes me feel less alone and that’s a big deal for me because I don’t think I know anyone who gets it apart from my partner and we’ve been on this road with my son for 4 years now. You’re really blessed to have the support of so many. Keep up the great work!

  4. I could not have said any of this better myself, I was reading this thinking, omg that was us and this is us now! My son is newly diagnosed and we have been through all the emotions and I know I only know half of what I need to know and that scares me. Thank you for this, it really helps that we are not alone!

  5. I am 48 years old and was diagnosed with T1 at the age of 4. I can tell you that there will be difficulties ahead but after 44 years of this F&(*^ing disease I am alive and healthy and looking forward to living well for many years to come. Please do not despair – there are so many more resources available to you than when my parents were dealing with me in the 60’s and 70’s. Please feel free to contact me if you would like to talk: cch3073@gmail.com.

  6. Frank,
    My daughter was diagnosed on Easter of this year. She was 2 1/2 when diagnosed. We live in Illinois and I have looked up community groups and info on D.A.D.s. I just don’t seem to get many answers. I have called Canine Hope for more information or direction on where to begin for my daughter. I NEVER seem to get responses. I follow yours and Luke and Jedi’s blog, and I read your posts everyday. I love them and they make me smile. Please, if you have time can you possibly lead me in the right direction, because frankly even being a part of online communities and reading information on top of information I still feel alone, and unprepared. We have started fundraising for a D.A.D. but other then that I can’t get anyone to even respond to me.
    Ashley

  7. You have much the same take as I had on it when my son was diagnosed 6.5 years ago at 15. I had been a nurse years before but told my husband that they only gave you enough information to be able to kill your child. At least that’s what I felt at the time and I knew what I was doing. The first three months were a horrible time because it was the day-to-day living that they never explain and our Doctor, who didn’t give us an appointment for three months or even see us in the hospital, insisted we call him for every insulin shot if his blood sugar wasn’t in a given range. I immediately knew that was no way for a teenager to live, so searched for another one.

    We were lucky to get one who had himself been diabetic. This is a great thing when you are dealing with a teenage boy who is already hormonal. There was nothing my child could say that this man hadn’t already tried or done. It was amazing. This kid didn’t even want to acknowledge the disease or give himself a shot and his doctor wanted to know why. Through it all, this man kept telling our son just how lucky he was to have a supporting family. He went on to explain that some family were just so afraid of the disease they forgot to live.

    I knew that my son would need to learn to live with this but my husband was reluctant to quite go that far. I pointed out that we wouldn’t be with him forever and he’d have to learn sometime. Eventually, my husband and I had long talks about the disease and what we could do with our son to help.

    It must have been the right thing because other than paying for the meds or asking the occasional question when he’s feeling ill, we don’t discuss it much. He’s a wonderful young man, attending college and still lucky enough to have the same doctor, who still holds his feel to the fire.

    The first year is the hardest time and I am so grateful for the support of friends, family and those on social media. And I’m happy that you found some of those same resources. It’s wonderful to know you’re not alone.

  8. Frank. Wow. Thank you for sharing. Thanks for the window into your world. I couldn’t imagine it and yet, I see it’s totally possible. What an inspiration you all are.

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