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.

Decisions….decisions….

I like to think of myself as a “mostly judgement-free” mama. I don’t outwardly judge other moms since it does no one any good, but I do judge other moms inside my head every once in a while. I will continue to work on being a judgement free mama, but I know I have come a long way in the last year. And for the record, we all know there is no such thing as a 100% judgement free mom and if you say you are, you’re lying.

I am also a 100% breastfeeding mom. I took everything in my breastfeeding class to heart and for better or for worse I developed this mentality of “I’m going to hell if I don’t breastfeed my child”. Breastfeeding Little Miss was arguably one of the hardest things I had to do as a mom, but I did it for just over a year. I was not one of those moms that loved breastfeeding – I liked it during the day and learned to tolerate it during the middle of the night. But what got me through it was the phrase “breast is best” and my SUPER-competitive personality – “of course I will breastfeed, its what is best and I have to be the best”.

So naturally, when Little Sister arrived, the plan was to breastfeed her until she was at least one year old. Boy did that plan change! I should have seen the warning signs, but as we all know hindsight is 20/20. In the 2 months that I breastfed her, she would park herself on the boob and fall asleep within 5 minutes. If she didn’t fall asleep within 5 minutes, she would spit up most of what she ate within 10 minutes. She had a terrible latch and there were countless times where she would choke and/or vomit. These were new and big challenges for this breastfeeding mom! So I changed my tactic – I pumped for 20 minutes, 6-7 times a day so that she could take breastmilk from a bottle. As my fellow moms know, pumping is worse than gouging out your own eyes. Even though the bottle had a slower flow, the issues still persisted, albeit less frequently. Fast forward a few weeks, which included 2 ER visits and an overnight stay in the hospital, we learn that Little Sister has reflux and is allergic to eggs, soy, peanuts, and dog dander. If Little Sister came in contact with any of her allergens, she would break out, head to toe, in an itchy, red rash which I learned was actually an eczema flare-up. She would also be more prone to vomiting and/or spitting up most of her meal. So in a family that has no history of food allergies, eczema, or reflux, my baby had all three – and she had them in a bad way. Back to the allergies for a moment and keeping in mind that I was still breastfeeding – can I just say that there is not a whole lot of foods that don’t contain eggs or soy?! Breakfast, my favorite meal of the day, was ruined for the next 10 months. If you know me, you know how I love my omelettes – breakfast, brunch, lunch, and/or dinner. I went through my fridge and pantry and found that over 70% of the “prepared” foods I ate contained eggs, soy, and/or peanuts. I cut those items out for over a week to ensure they didn’t pass through my milk yet her eczema and reflux still flared up which made for a very unhappy baby. So with a heavy heart, I made the decision to give up breastfeeding. For me, knowing that I could potentially contribute to her feeling miserable outweighed the benefits she would receive from breastmilk. Plus having piece of mind that my milk was not a direct cause of her eczema and reflux flare-ups was worth more to me than words can say. In the end, Little Sister got “breast is best” for a little over 2 months and now eats a special amino-acid based formula (if you read between the lines that’s just another name for expensive). While her skin is not always clear and her reflux is not always under control, she is happy more often then not and that is priceless.

Why am I telling you all of this, you ask? 2 reasons – first because you’ll read it (and hopefully not un-follow my blog) and second it’s important to remember that as moms we have to force ourselves to make difficult decisions every day. So instead of judging one another (I can’t believe she is feeding her baby formula when breast is best) we need to support one another through those difficult decisions. You just never know what factors forced a mom to make that particular decision…