Always Learning

It is crazy to think that over 6 months have gone by since Nora’s T1D diagnosis – some days it feels like we have been her pancreas for years while other days we feel like we are just taking the first steps of this lifelong journey. Here are a few things we have learned along the way and feel compelled to share with the world:
  • Managing T1D for a child that cannot talk is like trying to hit a moving target while blindfolded. Some days we got it (YES!) and other days we are WAY off.
  • If she is having a temper tantrum we check her blood sugars. Big swings in blood sugars can lead to BIG feelings.
  • Just because her blood sugars are low doesn’t mean she is going to sit still or stop playing – find a phone or iPad STAT.
  • You can NEVER overpack snacks – they will always get eaten. Anyone with young kids can understand this one, now multiply it by 10.
  • Technology is a blessing, until it’s not. It helps you sleep better some nights and keeps you up other nights. It gives you comfort, but you’ll be on your phone more often then not checking her numbers and texting her care givers.
  • Always pack extra supplies, and then pack an extra set. Kids are accident prone.
  • Just because you dosed her insulin right at lunch one day, doesn’t mean it will be right the next for the exact same lunch. We have hormones to thank for that!
  • You will become a nighttime ninja by sneaking into her room to check her blood or give her insulin at all hours of the night.
  • Your heart will break with every high, every low, every site change, every CGM change, and every finger prick, but it will grow back stronger after each break.
  • She will grow up to be a patient, determined, grateful, flexible, kind, supportive, healthy, problem solver. I know this because I have lived with and managed my own T1D for over 20 years.

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.

Taking the leap

Well, I am at it again!  Not only am I a SAHM to 2 beautiful girls, President of my neighborhood association  (next up -taking over the world!), and on a committee to bring a Spanish dual language program to the girls’ future elementary school,  I decided to become a group fitness instructor.  Now before you go all skeptical on me, keep in mind two things:  I am a type A personality, therefore I literally do not know how to just do nothing.  Plus, I genuinely want to make a positive impact on people’s lives.

When I told some friends and family members about my new endeavor, there were two typical responses – the first, and most common, was “don’t you have enough on your plate?”.  I am the first to admit, there are days where I feel like I am busting at the seams running on 5 hours of sleep and trying to keep up with the girls and the house.  Add anything else on those days and watch out for my infamous water works (in case you didn’t know, I’m a bit of a crier).  The second and less common response was “that’s awesome!”  followed by “what made you decide to do that?”.  At first, my response was “I’m basically at workout class 4-5 days a week, why not get paid for it?”  Sure – it will be nice to bring a little money in per month and be able to attend workout classes for free, but after some reflection there is a bigger driver of taking this leap.

I subscribe to “A Mighty Girl” feed on my Facebook account and have been since Little Miss was born.  Wanting to raise a daughter (and now I have 2 daughters!) who is strong, independent, and kind among other things I knew I was going to need all the help and support I could get.  This news feed is just a small tool in my toolbox.  Each time I see a post, I am inspired by it and look forward to sharing them with the girls when they are a little older.  Each post shares a story of a “Mighty Girl” who made a positive impact on something either in the past or present.  As I read the stories, there is always a moment where someone inspired the “Mighty Girl” to push beyond their limits, break barriers, and make a positive impact on someone or something around them.

So why did I decide to take the leap and be a group fitness instructor?  I want to inspire those around me.  Wether it be the first-time mom who didn’t think they would be able complete a 5k, half marathon, and/or marathon soon after having their baby to the mom with three kids under 5 whose daily win is getting out the door to go to workout class.  But even more than that, I want to inspire my girls.  I want them to see that little things can produce great, big results.  I want them to feel the joy of breaking down barriers and achieving goals.  I want them to feel pride in improving something around them.  In short, I want for them to be the “Mighty Girl” in their own life, whether they be the person who inspires or they are the person who is inspired.

As Dr. Suess says “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”