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.