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.

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.