I am an avid reader and I like to knit although I never got much further than hats and scarves. I have recently become a gardener and really love being able to take from the garden and provide dinner for the family. My biggest strength as a mom is being able to say I am sorry. I make mistakes and feel like I learn more as mom everyday, so by being able to go back and apologize for my wrongs, I feel like my girls will learn the value of being humble and knowing we cannot always be right. When I am not being a mom or homeschooling I really enjoy seeing a good movie or having a glass of wine with my husband or friends.  Just an evening away is very rejuvenating for my soul.

In April of 2015, my spunky little firecracker of a middle child was diagnosed with Type 1 Diabetes.  It was so confusing and very much like a whirlwind of emotions and thoughts.  She had been having a lot of accidents at night and they were starting to happen during the day as well. Then noticed how much water she was consuming and thought I had solved the problem. Unfortunately her thirst became insatiable and I was at a loss. Our pediatrician at the time knew as soon as he saw her, we did a simple finger poke in the office and her Blood Glucose level was over 600.  (To put that in perspective an average non-Diabetic has Blood Glucose reading of 80-100).

We were very lucky and did not spend the night in the hospital but did spend about 5 hours at the endocrinologist learning about how to manage type 1. We were sent home with a grocery bag of needles and insulin to giver her shots 4-8 times a day and their phone number. Then we were instructed to come back every week for the next month then every two weeks then once more before we came to our new normal of seeing the endocrinologist every three months for check ups and questions.

I knew of no one with type 1 (Except for a girl in The Baby-Sitter Club books I read as a kid). Dallas, my husband, his grandmother was a type 1 diagnosed as an adult she passed before we were married. So this felt so new and strange to poke your kid with a needle is a horrible feeling and then to do it over and over all day is miserable, there were times we had to pin her down, it goes against every fiber in your being as a parent.

Some of the challenges that come with Type 1 are its impossible to put in a box. Every day is new challenge and no two days are the same. Her blood sugar level is affected not just by her food she eats but also the weather, her mood, her activity level, her emotions. Long term high Blood sugar leads to complications on other organs, and low blood sugar makes you feel weak and lethargic and you can pass out or die.  Some of the best advice I got was to remember Diabetes was a living thing and always changing so don’t beat yourself up over the bad days, although i have to admit it is still very frustrating. Another challenge is the misconceptions that go along with it. A lot of questions revolve around ignorance spread by misconceptions in the media. Stuff like: “She doesn’t look fat” or “I didn’t know she ate a lot of sugar.” And how to manage it like ” So she eats more healthy and now she is fine right?” But her broken pancreas had nothing to do with her exercise level, how much sugar she eats or how healthy she eats now, a Piece of her body is no longer working and so we have to play the part of Pancreas on the outside. She wears an insulin pump which feeds her insulin throughout the day and then i program it to give her more insulin when she is eating or when her blood sugar level is high.  It is similar to a port in that it is under her skin but every three days we take it out and find a different spot on her body and poke her again with a new inset (port) and it lasts another three days, we call these her robot parts. 🙂

I have spent the last two years telling Lilah she is not limited by this disease, that she can in fact do anything everyone else does. And she can for the most part, but sometimes it may take her longer to get the same goal. Hot days can affect her tremendously so while she is an avid soccer player there are times she has to sit out and get her blood sugar back to stable. Or taking a test in school sometimes will require her to come back and finish it later when her blood sugar is better because she can’t focus well.  But all in all I feel like the challenges presented to her she has met with a fierce determination to conquer.  She tries hard to explain her robot parts and what they do to anyone who is nice enough ask and not stare, we love to educate and inform so please come ask us!!!

We have felt so supported by God and by each other we are tight family and look out for one another I couldn’t do this without my husband and Lilah couldn’t do this without her sisters. There is great support among the type 1 community and a big shout out to Beyond Type 1, hands down the best organization spreading awareness education and seeking a cure.

My advice to other mothers of type 1 kids is you’re not alone!!!! It can seem that way in the beginning and in your day to day but the community that makes up diabetics is awesome! They are so welcoming and inviting. Also always remember every day is new!!! And the numbers on the glucose monster are not a direct reflection of you or your ability to manage this disease, try your best and love your kid right where they are.

Dorothy, I really love that advice in general, for parenting: Try your best and love your kid right where they are. Genius! Thank you for sharing a part of your story with us!