This week we have a story from Marie Ronan, from Co. Meath, whose son, Jack age 8 was diagnosed just 15 months ago. I met Marie, briefly, at last year's Thriveabetes but we have been in touch quite a bit since. She has a very eloquent way with words, so I warn all the Mammy's & Daddy's out there that when you meet her at Thriveabetes 2016 you will just want to rush up and give her a great big hug.... but get in line behind me!
I decided to write this 15 months on from diagnosis. I feel ready to share the story of our first year living with diabetes and how it has impacted on my little family of 4. Back in January 2015 my son Jack – a lively, “healthy” sweet 7 year old began to fall ill without explanation and every instinct I had was telling me that something was wrong. He was still functioning but his colour was fading and the afternoons became filled with naps and nights full of trips to the loo. I was 8 days over major surgery when I returned home and realized this was no growth spurt or childhood illness. As we were driving to the doctors, I remember calling my sister in law and telling her that I thought Jack had diabetes. She reassured me that it would be ok – she has T1 herself but I knew in the pit of my stomach our life was about to be turned upside down.
From there it’s a bit of a blur – rushed to Temple Street, going straight through A&E, confirmation that my gut was right, watching my husband break down in the corner of the emergency department where he couldn’t be seen. That night I cried for what I knew was ahead but I was also eternally grateful. I was grateful that we knew what it was and how to treat it and that we had caught it early so there was no irreversible damage done. I set out my stall of blessings and counted each one whilst desperately ignoring the growing dark cloud of fear and anxiety that was forming. But my husband and I made one decision that night that has stuck with us – that it would never be a reason why he wouldn’t live/succeed/flourish and thrive. We would fight from that night onwards to ensure Jack learned to live with diabetes and not that his life would be ruled by it.
Our first year of diagnosis has been a whirlwind of carb counting, pump training and re-learning the signs that my son is struggling. After a few weeks I decided to go back to work because I was desperately trying to show him that this diagnosis wouldn’t rule over our family – that we would continue to flourish regardless and that this would become an extension of our current lives. This decision was only possible because we had the amazing support of my sister who cared for both Jack and Millie. She learned with us every step of the way and all of our family took our lead to ensure Jack felt no different.
During this time Jack didn’t miss a soccer training session or a swim lesson or a playdate. Myself, my husband and my sister have worked tirelessly to ensure that we planned ahead, carb-counted ahead, pre-trained ahead anybody who would be coming into his life. He showed up for summer camps not thinking for a second how coincidental it was that his new trainer had a pack for a hypo already prepared and knew his routine off by heart. When he stood up to take a lead role in his school play I cried with pride. I cried because nobody knew that he had battled hypos all day because of his stage fright or that he was still getting used to his pump and his costume choices had to work around it! I sat back and watched my baby boy take to the stage with a newly gained confidence. A confidence that had grown in the knowledge that he had been knocked down but he got back up, that he would have battles ahead but that he had won so much ground already, that he had so much more to consider when planning his future but for now, for this moment he was Jack, 8 year old football fanatic with a wicked sense of humour and a twinkle in his eyes.
I have learned with this chronic illness that so much of it is hidden from those not dealing with it. Our little family battles every day whilst our extended family & friends look on unaware – a constant balance of tweaks, considerations, guilt ridden reviews of trends and data, half-sleep filled nights worrying about night sweats and hypos, ecstatic days of feeling we have nailed it followed loosely by tearing our hair out trying to understand a sudden high or low, of anxiety ridden waits for Hba1c results and painfully condescending questions from consultants, desperately trying to make sure that my 5 years old daughter Millie feels like part of our journey. And so we find ourselves here facing into the storm every day but working hard to remember on occasion to lift our heads to see how far we have come from that late afternoon in early Feb, to celebrate our little wins and our big milestones. I asked Jack recently if his diabetes was a big thing or a small thing in his life….. he told me it was a little thing that gets bigger some days but other days it stays small. I couldn’t have said it better myself.
This has been our journey, it will be different to yours and no better or worse. My only advice to you is to breathe…. Breathe out when you want to cry from tiredness, breathe in when they get through a match without a subsequent hypo, breathe out when somebody tells you they will grow out of it, breathe in when they nail their crab counting ratio, breathe out when your HBa1c numbers aren’t good, breathe in when they make a new friend and proudly show off their pump. Take it day by day and sometimes hours by hour and breathe.
Thank you so much to Marie and her family for sharing with us.
Thriveabetes 2016 takes place on Saturday 1st October in Naas, Co. Kildare. Registration is open now and you can read more about our speakers here.