Feature Friday, Jane and Family!
(A Type 1 Diabetic Story)
Today we are learning about Jane (age 4) who has been diagnosed with T1D and her beautiful family! The diagnosis story reminded how scary and quickly symptoms can appear and how precious life truly is. Jane’s mom Claire listened to her gut and was able to get her daughter help quickly. I hope this story opens your eyes, teaches you something new or introduces you to a new family.
My name is Claire and I am the proud mother of Jane who is four years old. We live in a suburb outside of Kansas City, Missouri with Jane’s dad (Jon) and her two siblings (soon to be three)!
I am an Occupational Therapist in the NICU at the pediatric hospital in Kansas City. I love my career, but my most important job is being “mom”. Jane is the sweetest child you will ever meet, loves to give anyone a compliment, and is her happiest when she is around her family, especially her cousins! She loves legos and crafts….her creativity amazes us! Jane can also be quiet and anxious, especially in new situations. And this year we have also learned of her resilience and bravery, which are qualities that did not shine until diabetes came around.
Diagnosis and Story
Jane has been diagnosed for almost 7 months. She was diagnosed on November 13, 2020. Looking back, there were small changes in Jane three months prior to her diagnosis including difficulty falling asleep, tired, and more short fused than normal. Through her first few months in preschool, she would cry before going and look like a zombie when we picked her up. Her teacher had said multiple times at pick up “Jane was very tired today!”. I attributed this to anxiety with a new school. We started noticing more apparent changes about 3 weeks before her diagnosis. She was angry often and would say “I cannot calm my brain down”. She would wake up in the middle of the night to go to the bathroom more frequently and eventually started having accidents on her way to the potty.
Her most significant symptom and what ultimately led us to the doctor was, the week before diagnosis, she had three “night terror” type fits. She would wake for 2-3 hours overnight, screaming, kicking, biting, and unable to calm herself. It was terrifying and I knew something was wrong. I googled (of course) and convinced myself that there was no way it was diabetes. Then I took her to urgent care on a Friday evening, in the middle of a pandemic, and the doctor told us within minutes that she had type 1 diabetes. I was in shock, we have no family history, and I knew nothing about type 1 diabetes.
We were sent to the ER, at the hospital where I work, and admitted overnight to a general pediatric floor. Jane was not in DKA, we caught it early. I am so thankful I listened to my motherly instincts and ignored anyone who made me feel I was over reacting about her “small” changes. I am also oddly thankful for the weeks leading up to her diagnosis which included both her siblings birthday parties, halloween, and a holiday pop up shop full of sweets. Those clustered, sugar filled, experiences ultimately led to a significant increase in her symptoms which triggered me to take her to the doctor and receive an early diagnosis. The next several weeks were the worst we have ever experienced as a family. We dealt with severe anxiety in Jane, behavioral changes, and lots of restraining to get our injections done. I am happy to say that we have come so far since that time.
Initial Thoughts After Diagnosis
My initial thoughts were shock and debilitating fear. We were in the middle of a pandemic, quarantined from extended family, and I felt very alone and isolated. I honestly didn’t think we would be able to do it.
We have always been very honest with Jane and tried to explain things correctly and at her cognitive level. I think the first way we explained diabetes while in the hospital was “your body isn’t able to turn your food into energy to keep you strong and healthy so you need shots of medicine to help” but soon after we started using more medical terms, explaining the function of her pancreas, how insulin works, and how her body is different than someone without type 1 diabetes.
No matter how well (or not) you feel your child and family are coping, do not be afraid to seek mental health services to support your child and/or yourself! Jane sees a psychologist who specializes in kids with chronic illness and this has been incredibly helpful to both Jane and I. We have been able to work through specific anxiety triggers related to diabetes which not only improved her quality of life, but ours as a family as well. I am looking forward to her psychologist being a resource for us as Jane grows and her world changes.
Thriving with Diabetes!
Teamwork helps our family thrive! Thrive means that we are living our best life and doing the best we can! Although teamwork is not always possible with three small children, we are focused on inclusion to make sure all of our kids feel equally loved and attended to, despite diabetes being a part of our family.
What do you wish someone told you earlier as a caregiver for someone with diabetes?
Even though it feels like your world is crashing in during those first weeks to months, it truly does get easier. And your child will show you strength that you didn’t know they had.
Words of Encouragement and Hope
You are not alone! Find other families that have been through it or are going through it with you. It truly helps with your well being to feel part of a community who supports you and has walked the same path. Ironically, we found our T1D family while in the hospital receiving our diagnosis. Their little girl, the same age as Jane, received her diagnosis the same night, within the same hour! We have been through this together every step of the way and it has been an irreplaceable blessing.
PS! You can follow Jane’s journey with Type 1 Diabetes on Instagram @JaneAgnes_T1D Please reach out there if you need someone to share experiences with or if you need support from a fellow T1D mom. Although we have come far in the last seven months, we are still learning so much every day and have a lot to conquer!
-Find this week’s blog post here to learn the 3 things you should know about staying hydrated as a diabetic!
-Check out the 30 Days to Acceptance Journal for new T1D children here on Amazon.