My Journey

This post was recently shared on MyID’s T1D blog, but it is important to me to make sure it has a home on my blog as well. This is my journey…

Everyone has moments in life that rock them to the core, ones that change their thinking or put them on a whole new path. For some, those moments are joyous things like marriage or the birth of a child. For others, those moments might be shrouded in challenge like the loss of something or someone important. I think those challenging moments are essential to living because you never know what you are capable of without them. Like many people, I have had numerous positive and challenging moments that have stopped me in my tracks, but my daughters Type 1 Diabete diagnosis brought me to my knees.

I have been actively managing my own T1D since my diagnosis over 26 years ago. The management of my T1D has just been a daily thing to do like getting dressed or making my bed. I didn’t go out of my way to share the literal ups and downs of living with T1D. My mentality was “it just is what it is” but I also thought the act of sharing would result in people sympathizing or pitying me for something that was my reality. I didn’t want people to feel bad for me, I wanted them to see past my T1D and see me. Of course, if someone asked me about giving myself an insulin shot or taking my blood sugar levels, I would talk with them about what I was doing and why but for the most part I keep my invisible disease invisible.

This all changed when my daughter was diagnosed with T1D in December of 2018 at the age of 18 months. Suddenly, I realized that I couldn’t continue to be quiet about life with T1D. I realized that sharing is a critical part of the journey with this autoimmune disease – the more I share, the more people know, and the more they know, the more they understand what’s its like to live with T1D. Without this basic understanding, there is nothing – no support, no love, no fight for a cure.

When I tell people about Nora’s diagnosis, generally the first response is “she’s so lucky to have you”. I give a smile and a nod but think to myself “I’m lucky to have her”. Her moment has changed me – the way I think about this disease, the way I interact with it, the way I talk about it. Now, I’m shouting from the rooftops that we have T1D and that we will continue to rise up and do our part to educate and fight for a cure.

Why is Third Time a Charm?

A couple of people have reached out and asked me why I’ve decided to reboot my blog for a third time 😳. “Third times a charm”, I say with a big smile hiding the fact that I really didn’t know the answer to that question. But that’s the beauty of following your heart – sometimes it takes a while for your head to catch up.

Driving home from this mornings preschool drop off, I had been talking with one of my best girls about building my social media presence and she told me to tell my story the rest will fall into place. My story, huh? What is my story? I thought about this question during my entire short (and cold!) run. As I was cooling off, my head finally caught up to my heart.

When Nora was diagnosed with Type 1 Diabetes on December 17th, 2018 I sat in the hospital room that first night unable to sleep. My head was spinning, my heart was grieving. At 3:00 am, I finally gave up on sleep. I texted a couple of my best friends to let them know about Nora’s diagnosis which ended up being a big step of acceptance for me. After that, I googled everything I could related to young children with Type 1 Diabetes. I was looking for someone, anyone, who could share in my current situation and in their own words tell me that everything is going to be ok. Much to my dismay, all I found was clinical and factual information related to kids and Type 1 Diabetes. I know these types of websites are exceptionally helpful for families who haven’t had any experience with Type 1 Diabetes, but I’m different – I’ve been managing my own Type 1 Diabetes for over 25 years. But even with this significant experience, I was still looking for a connection to someone who might have had the same feelings I was while sitting in a dark and lonely hospital room, someone who might have some tips or tricks in managing this disease in a person as young as Nora. I hope that I can be the person I was looking for, and never found, when I was most vulnerable.

Type 1 Diabetes is not a death sentence – I’m living proof of this, but it is still a difficult and overwhelming disease to manage no matter if you’re 36 or under 2. Here’s to building a community, sharing in experiences diabetes related or not, and finding the extraordinary in the ordinary.