We heard those words on November 25, 2017, two days after Thanksgiving. Our four year old son had not been acting like himself for about a week we had our answer. He was diagnosed with Type 1 Diabetes. That started the journey we’re on now, doing the best we can caring for our child that now has a life threatening, lifelong disease. Little did we know that two and a half years later, our daughter would also be diagnosed with Type 1 diabetes.

Hi! I’m Jamie and I am a wife and a mother to three children, two of whom have Type 1 Diabetes. My oldest son, Judah, was diagnosed at four and a half when my youngest son, Owen, was three weeks old. My daughter, Zoe Kate, was diagnosed at four and a half as well, in June 2020 (another event for which to be thankful for in 2020 😒).

I’ve been married to my husband for 10 years and we are definitely a team when it comes to the care of our children. I know that’s not everyone’s situation, but I am very thankful that we get to double team Type 1 Diabetes. We want to share our experience, offer some encouragement, be a listening ear and a shoulder to cry on for other parents caring for children with special needs. What I have to share is mostly related to Type 1 Diabetes, but I know the worry and anxiety that comes from having a child with a life threatening disease.

Judah was in Diabetic Ketoacidosis (DKA) when he was diagnosed and it was one of the scariest experiences of my life. Thankfully, we were able to catch Zoe Kate’s Type 1 Diabetes early and were able to avoid Diabetic Ketoacidosis at her diagnosis.

Over the next few posts I’ll share Judah’s diagnosis story and through that I’ll tell you about TrialNet and how that helped us catch Type 1 Diabetes in Zoe Kate before she was even showing symptoms.

Before Judah was diagnosed with Type 1 Diabetes, I didn’t realize how hard it would be a to parent a child with this disease. I didn’t realize the sleepless nights, the different moods with high or low blood sugars, and that my son wouldn’t act like himself for months. Five months after his diagnosis we came across a couple of helpful tools and it helped get our family to our new normal instead of Type 1 Diabetes controlling our lives.

One tool was Dr. Richard Bernstein’s “Diabetes Solution” book. He encourages a low carb diet, but not to stop the use of insulin (since that’s impossible with Type 1 Diabetes), but to reduce the amount so there aren’t the big swings from high to low to high to low blood sugars (the law of small numbers), which is what we were experiencing and was giving us so much anxiety. Now, I’ll be honest, we don’t follow what he says 100%, mostly because I only read about half of the book. But if I have questions, I regularly go back to Dr. Bernstein’s book and what he says has worked very well for us. (I’ll share more of that journey later)

I would also suggest following the Facebook page Let Me Be 83. She is a mom of a type 1 diabetic boy and she has some GREAT insight. She gives meal ideas and recipes, snack ideas, encouragement. She has a passion for helping type 1 diabetics stay healthy. I was stressed and desperate when I found her page five months after Judah’s diagnosis and she gave me hope moving forward.

If you are looking for a community of other parents of Type 1 Diabetic children, I highly recommend the Facebook group Parents of Recently Diagnosed Children with Type 1 Diabetes. You can ask questions and there are so many knowledgeable people that give great answers. They are my go to group for advice. I don’t think I’ve ever actually asked a question on there, because every time I’ve gone to the page, another parent has already asked the questions I have. So there is TONS of information in that group as well.

I’m not a great writer or anything, but my desire is to encourage other parents going through a tough time. And sometimes you need to be able to say, “my son had a low, it wasn’t a stubborn or even very low low, but I HATE that this is my son’s life” and I’m here to listen to you and feel your pain. My heart breaks for my kids every day, I wish all of their organs worked the way they were supposed to, but they don’t, and that’s something to be grieved. But there can also be joy – our kiddos are amazing! My five year old daughter is giving herself insulin shots; I whine when I have to get a finger prick! And, honestly, just seeing their good attitudes about all they go through is so encouraging to me. They take peoples questions about the gadgets stuck to them (Dexcom CGM and a pump) in stride, even when they’re tired of answering the same questions over and over again. I love them and am so very proud of them!

Thanks so much for listening to me. I hope our story can be an encouragement to you, even if your life has different obstacles and difficulties than ours and maybe we can even share some laughs! And speaking of laughing, sometimes I can be a little forgetful, you know, like unlocking the front door and leaving the keys in the door and sleeping all night with the door locked from the inside with the house key hanging on the outside of the door. So if it seems like I left something out, let me know!

What questions would y’all like for me to answer? What about our life would you like to hear about? Do you follow any special diet? I can’t eat gluten, does your family have any dietary restrictions? Are there any other special needs in your family? What about your children amazes you? Do you have more than one type 1 diabetic kiddo?