As you know, living with Type 1 Diabetes comes with many side effects. These side effects are not just physical, but also mental. Living with Type 1 Diabetes before being married and having a child was simple. I didn’t think about it. I didn’t think about long-term effects on my body and how it would or could effect everyone’s lives around me.
That all changed when I found out that my wife was pregnant back in 2014.
That is when the anxiety began.
In fact, I wrote about this several times for Medtronic and also on my own blog.
I started to research every possible way to decrease the chances of my daughter, who wasn’t even born at that time, to not be diagnosed with Type 1 Diabetes.
Once she was born, it was something that I thought about every single day of my life.
Every time she would drink water, I’d ask my wife, “has she been drinking a lot?”
Every time she peed, I’d say, “didn’t she just pee, has she been peeing more frequently?”
Well, back in December and January of 2018 my wife and I started to notice that our daughter was getting up in the middle of the night a bit more frequently than she used to in order to go potty.
Finally, I decided to have her pee on a ketone strip before I go through the dramatic experience of pricking her finger.
Ketones
Moderate ketones were in her urine.
I knew what it meant, but she did have a bit of a cold, so I had her drink a lot more water because I knew that you could possibly have ketones from an infection.
I knew I had to check her blood sugar, so we had to bribe her to let me do it.
As I put the blood on the test strip, my heart was beating faster than it ever had before and it was also the longest 3-5 seconds of my life.
And then it popped up.
258.
I let out a loud yell and then realized what it meant and how are lives were going to change from here on out and it was going to be my responsible to stay strong for my wife.
We called the pediatrician and they told us to go straight to the ER.
Is This a Movie?
This is where I began to feel like I was in a movie and it wasn’t real. We were having a mini-blizzard that day here in Eastern Pennsylvania, so I had to go down and clean off the car while my wife had to explain to our daughter who was 1 month away from turning 4 that we had to get dressed and go to the hospital.
As I’m writing this, it is bringing up all these memories again that I have tried to block away from my pain because they are the most painful memories that I have.
That is partly the reason why it’s taken me 3 months to talk about it publicly.
I used to wake up, go to bed and throughout the day worry about my daughter being with Type 1 Diabetes and now I live every single day feeling guilt for having passed this on to my innocent child.
Three Months In
We are now 3 months in and she’s wearing a Dexcom and she loves doing Dexcom high fives with daddy. This, now 4 year old, has taken this like a champ. After crying her first few days of shots, she never complains.
She doesn’t complain about a prick on her finger.
She doesn’t complain during the 4 shots a day she gets.
She is my true champion.
Not only her, but my wife also. My wife is the strongest person I know because she has lived with me and my diabetes for 14 years and from day 1 in the hospital she took charge of learning how to manage our daughter’s diabetes.
She didn’t just sit back and let me do it.
I am honored to be able to call those two my wife and daughter.
Thank You
I wanted to give a shout out to some people below who I reached out to either immediately or shortly after coming home from the hospital. And if I forgot to mention you here, it’s not because I don’t appreciate you, it’s because that time period was a blur in my life.
- My brother and sister in law. They have a T1D daughter and were there to help support us emotionally during the entire process and continue to every day.
- My mother and father. My parents met us at the emergency room and were with us from the open of visiting hours to closing of visiting hours pretty much and were there for us for everything we needed, whether it was support, movie time with our daughter so we could just get out of the room for a minute or anything else we asked.
- My In-Laws for being there for support for my wife who, at the time was an emotional wreck, and she had every right to be.
- Scott Benner. Scott was one of the first people that I reached out to, obviously. The text messages back and forth with Scott were reassuring to know that I can do this and I need to be the one to be the support system.
- Kerri Sparling. I reached out to Kerri because who else in the diabetes space are you going to reach out to? Kerri was listed on a sheet in the diabetes binder that they hand out to all newly diagnosed parents.
- Scott Johnson. I’ve known Scott a long time and he’s always been there for any request I’ve ever had. Scott was able to send out some awesome Sugar Monster stickers that my daughter absolutely loves. Any way we could make her laugh during that time was worth it.
- JDRF / Novo Nordisk / Lily – All of these companies graciously sent out Bags of Hope and the Coco Diabetes plush animal that my daughter plays with almost every day still to this day.
- As I mentioned, if I didn’t mention you here, it’s not because I don’t appreciate what you did for me. It’s been 3 months and those days following the diagnosis were a blur.
Don’t worry too much, a type1 cure is only 5 years away.
I was told that it was 10 years out in 1985
Really do tell. I have had T1D for 39 years
Oh Chris, I am so sorry to hear this. But remember she has a great mentor and she will have it so much better because she has you. Many blessings !!!
Sending you, your wife, and your warrior princess daughter boatloads of love!
If you need anything, let me know. Xoxo
You could not ask for a better partner than JDRF! (Likewise the fabulous Kerri Sparling and Scott Johnson!) On April 10th I “celebrated” (wrong word, right? Hah!) the 50th anniversary of my diagnosis with type 1 diabetes. (I refer to those early years and first decades as “the dark ages” in treatment. Still, I’ve made it through, without any of the insidious complications.) Chris, I hope that your wife will focus on what your daughter will learn from having type 1: resilience! And to never give up working for a cure. I’m here if you need me!
She has a great mentor now. Curious if you had her participate in TrialNet when she was a toddler? It is so important for family members to get screened for personal knowledge and to move T1D research forward. And it’s free.
Hey Chris I just ran across your blog today on twitter and had to leave a comment. First and foremost I am sad to hear about the test results for your daughter, as a father of two amazing boys and a beautiful girl I fight the same types of fears often. So far so good. As a new blogger/vlogger I wanted to congratulate you on a great blog post. It was straight forward, to the point and pulled me in right away. Good luck to you and all you do, and Im glad your daughter has a dad like you to walk her through this process.
That just stinks Chris. Your experience with D will help, clearly. But it doesn’t take away from the (insert appropriate emotion here) that you felt when hearing of her diagnosis.
Thankfully things are improving, albeit slowly. Hopefully she’ll grow up in a world where ‘artificial pancreases’ are commonplace and control is much easier. And thankfully you have all the various DOC people with support and encouragement. If you need something please ask.
Oh, my dear friend. I cannot tell you how sorry I am of hearing this. (sorry for my english, i’m still learning). Anything I can tell you is that I absolutley understand the way you feel, and my family too. I am a diabetic type 1 too, and my dad also was diabetic type 1.
Obviously he god a lot of help of my mom, who is one of the strongest women I’ve ever known. I was diagnosed with type 1 diabetes when I was four years old, so I get used to it since I was a child. I don’t know how old your daughter is, but mabe she will get used to this lifestile easily, than people who gets it at the 20’s.
I know I don’t know you and you don’t know me either, but the experiencie you are going through now is the same we went through eighteen years ago, when I became a diabetic. But allthough it was, and it is, tough, I had the example and help of my father, and your daughter will to. You, same as me, know how hard this is, and that is dificould to explain to other people. People think they know the way you feel, but they do not. They think it is easy. And precisely because of this, you will understand perfectly the way she is going to feel, and this will be a support for her. You are going to teach her, same as my Dad taught me to live with this.
I do not know if you believe in God, but when I was diagnosed, so many catholic friends told us “take this ad an oportunity” or “offer this to God”. And yeah, I think this is the best you may do, but people may not understand the way you are feeling about your daughter right now. And the best friend fo my mom told her then “We are crying with you, guys”. So I tell you that I’m crying with you, me and my family understand the way you are feeling because we went through the same experience one… But we are ok, and with some time, your daugther and you will be ok again. Just be patient and don’t stop praying. We pray for you