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From Regular Mom to T1D Mom

I am a 1st grade teacher and mom of 2 daughters.  Parenthood before T1D was a fine balance between raising one teen and one pre-teen girl, being a wife and fur-mom, and having the privilege of living my passion every day – teaching young students the love of learning.  After 19 years of teaching and Jaymie’s difficult beginnings (she was a 6 pound baby born with a 5cm tumor on her tailbone, faced multiple complications and surgeries for her first few years of life, etc) I thought I had seen everything medically-speaking.  I had no idea what the symptoms of T1D even were, though, hence why I didn’t at all recognize what was happening to Jaymie’s body in the weeks and months prior to diagnosis was not the least bit ‘normal’.  I remember her complaining about being super thirsty – well, of course you are!  It’s May/June and it’s getting warmer outside!  Then, she wanted to know why she was urinating more often – easy!  You’re going more because you’re drinking more!  One night, she even wet the bed… at age 13… and I still managed to blame it on something else.  You drank too much water before bed, so try to drink less.  I feel horribly looking back at this time period, but I had no idea.  The night that it finally clicked, we were at a concert.  I bought Jaymie a HUGE bottle of water hoping it would hold her over until the concert was done.  It didn’t.  In fact, she drank the whole (giant!) bottle in a few minutes.  It was in that moment that I felt a punch in my gut.  I knew something was wrong, but what could it be?

The next morning, I brought Jaymie to the pediatrician, fully expecting to hear that she had a UTI or kidney infection.  After taking a urine sample, the doctor came into the room and gently told us that Jaymie had ‘glucose’ in her urine.  I foolishly replied, “OK!  So what antibiotics clears that up?”  Little did I/we know, we were in for the ride of our lives, for the rest of our lives.  The doctor proceeded to tell us that she believed Jaymie had diabetes and that we must go immediately to Children’s Hospital in Boston.  I knew something was serious when she told us to not even go home first – go directly to the hospital.  Jaymie and I drove straight to Boston having no idea what the next few hours, never mind beyond that, would entail.  We had no idea the seriousness of anything until we arrived in the ER where we were swiftly taken into a room despite the waiting room full of people who were clearly ahead of us.  Doctors and nurses immediately surrounded us.  There were needles, IVs, and a flurry of people for hours before I we finally started to understand what was happening.  We were not going home from the hospital that night.  In fact, we would stay there until we learned what would become our new way of life.  

Life had its challenged pre-diagnosis, but I quickly realized how easy we had it compared to how complicated things were about to get.  Jaymie understood that too.  We didn’t have to say any words to each other.  We just squished into her hospital bed together and cried in each other’s arms.  We knew, without words, that our typical mom/teenage daughter relationship would be changing.  We always had a bond, but we also always had the craziness that existed between moms and daughters, especially at her age.  The bond completely changed on 6/29/19.  It became an unbreakable bond, one fortified with trust and strength that we were about to feel from each other in ways that we had never felt before.  

Initially, the challenges were technical.  We had to learn terminology we had never heard before: blood glucose levels, correction factors, carb ratio, bolus, and more.  I had to come clean and be honest that I was PETRIFIED of needles.  I was so upset with myself that I had to take the attention from my daughter during this time to work through a fear of mine.  I had to be honest, though.  I am so thankful for everyone at Children’s who coached me through my own fears so I could be there for Jaymie.  The challenges became even scarier when we first came home from the hospital.  It was like coming home with a newborn baby, only this time, I was equipped with needles, meters, glucose tablets, and insulin, a substance that now would keep my daughter alive, but could also kill her if I made a mistake.  The first few weeks and months were terribly stressful.  I don’t think I’ve ever felt anxiety like that in my life before.  I joined online support groups and spoke with local T1D moms.  So many of them told me it would get better with time.  I had to believe them in order to survive the first days, weeks, and months.  Otherwise, I would have completely succumbed to the initial stress and shock.  

The moms were right.  It does get better with time.  It doesn’t get easier, but you become more confident.  You watch your child in awe.  His/her strength and courage make you realize you can and will face this new challenge together.  Poking her finger every couple of hours was replaced with a CGM (continuous glucose monitor).  Syringes and pens were replaced with an insulin pump.  Although the fear never really goes away, some of it gets replaced with knowledge and confidence.  The knowledge and confidence inspires you spread education and awareness and bring attention to a very misunderstood diagnosis, Type 1 diabetes.  

I have learned so many lessons while being a T1D mom.  The biggest lesson I repeat often to myself is “Kid first.  Diabetes second.”  We do not limit going to gatherings where bolusing for certain foods might get tricky.  We don’t limit exciting opportunities with friends and families.  We’ve realized that Type 1 diabetes now requires us to plan extensively, always be prepared, be flexible when/if things don’t go as planned, and vocalize what you need from others to make things Jaymie experiences as close to the way every other child without diabetes would experience it.  Jaymie didn’t do anything ‘wrong’ to be diagnosed with T1D.  T1D may interfere at times, but we refuse to let it take over.  Jaymie has a right to experience everything being a kid and teenager have to offer.

As we approach our one year diaversary on 6/29/20, I think about how far we have come since diagnosis.  If I could give advice to newly diagnosed families, it would be to join support groups.  Take advantage of all of the appointments your team will want you to go to – nutrition, social worker, doctors, nurses, etc.  Learning and educating yourself is key.  Reach out to family members.  Be honest with them about what you are going through.  Most importantly, be honest and authentic with your feelings.  It’s ok to cry.  It’s ok to be angry.  It’s ok to feel lonely.  It’s ok to ask “why”?  It’s ok to have all of those thoughts and feelings, but don’t stay there too long.  Acknowledge them, but then open your heart and mind to other thoughts and feelings.  Your child was given a second chance at life.  Be sure to make the days ahead the very best days of them all – life is truly beautiful.  ❤️

Christie O’Connor.
I’m a 41 year old T1D mom and 1st grade teacher who loves Disney, dachshunds, dancing, and my family! Bringing awareness to the T1D diagnosis has become my passion since my daughter’s diagnosis on 6/28/19. 💙

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