Type 1 changes you…
The day before Craig was diagnosed, I knew nothing about this disease. We learned a lot, quick! Craig was so brave and he learned fast. He took it with stride and just wanted to get it figured out so he could get back on the baseball field! He matured so fast and has fought so many emotions through these past 5 years dealing with T1. He was more self aware, less confident because he was “different” but also he gained so much strength by serving the T1 community and advocating. He began to see power in his voice. He was changed by T1.
As a parent it was hard dealing with the unsurety of what the future holds. My mind was filled with constant fear and questions. You have all of these dreams for your kids and then T1 hits and you just don’t know what the future holds.
I was even more devastated just 3 months later when Madi was diagnosed.
Such a pure and innocent little girl, broken by injections, tears, pain and worry. She was so scared at every single shot. She was unsure about any new perso who came into the room, she was scared, she was mad, and she became even more independent and outgoing. Through love, prayers, comfort and lots of hugs, she pushed through. At just age 4 she was getting 7 shots a day. She is now the bravest 9 year old I know.
Daily she deals with stress, worry, and the constant pull of glucose numbers on her mind. Ups and downs, literally. A rollercoaster of feelings and symptoms every single day. There is no schedule or normalcy. Every day is different. She was changed by T1.
Her siblings became worried they woudl get Type 1. When? If? How? Why? They started to worry about their siblings in a way that no child should have to. They became care takers in times of need and they learned the ins and outs of Type 1 to help care for Madi. They lost attention, much needed time and also a part of their childhood because of the constant need their siblings had. They also became inspired by the bravery and determination of their siblings with T1. They became more open about talking about it to others and helping in the fight to advocate and educate. They became stronger. They were changed by T1.
As a mom, I have had so many feelings about this disease. After they were diagnosed, I felt like I had to mourn for the loss of the “old days”. The carefree childhood my kids had lost. A good nights sleep, last minute vacations, and quick trips to the park were replaced by shots, carb counting, training teachers and unexpected hospital stays. Even the simple things like dropping Madi off for a play date, now was a trial and other parents just wouldn’t take her because they were scared and uncomfortable caring for her… Running errands became more of a chore because you cannot leave the house without a bag filled with juice boxes, a meter, insulin and snacks. If these items were forgotten we had to go back home because they are the difference between life and death, literally. Sports, school, activities, scouts, holidays were all much more difficult now.
People around you think it all gets “easier” and ask how its going. Of course we all say “its fine”. Put on a smile and push forward. We have to. We feel like we have to hide our fear, tears and worry from our kids and those around us. It sure makes it a lonely life. I found comfort in reaching out to other T1s with my Heroes of type 1 project.
It helped my heart heal and see the light at the end of the tunnel.
It gave me a way to cope. I realized I wasn’t alone in this fight. I think the only way to have a fulfilling life is to be grateful for those things we DO have. There is no way to be truly happy without being grateful. That doesn’t mean Im happy all the time or that I don’t hate this disease, but I am so grateful for my children and the life they have, for their bravery and strength and for all they have taught me.
Through all of this, as “happy” as I try to be, I wanted to talk about the heavy burden on the shoulders on all T1 parents out there. Lets be real, it’s a heavy weight! Prescriptions, appointments, late night checks, juice boxes, sleep walking towards that Dexcom alarm, highs, lows, sickness, ketones… These are very valid and constant worries for me. I have dealt with SO much anxiety because of it. I worry about every little thing, I over think everything and Im up late most nights. I pulled away from friends and have become much more of a home body. I fight anxiety daily. I have never in my life had anxiety. I never felt uncomfortable in crowds or out and about. But now I do. My mind is overwhelmed with worry on a daily basis. I feel the difference in my parenting too. I am way less carefree and “fun”. I feel like Im over stressed and on edge a lot. Day by day I work on it, but T1 has changed who I am.
Even when we do it all right and try to be positive, the burden is still there, that weight on my heart is still there. I have recognized this lately and have tried to make a more obvious effort to address it. I have to say though, because Type 1 is a daily, hourly, no days off, no holidays off disease, it makes it really hard to relax or be calm. That anxiety, worry, and analyzing numbers never turns off in my mind. You watch your child suffer through it and that is so hard! You see the physical marks left by this disease.. scars, bruises, sores, and callused fingers. You comfort your child through the pain of it all and then you cry yourself to sleep alone. You stay strong and brave for them and sometimes in the quiet moments when no one is home, you let it all out. Ive been there. SO many parents have been there.
If you are a T1 parent, I get it.. You are not alone. You are so brave and strong and capable!
I don’t know if this worry will ever truly fade but I do know that our kids will get older. They will learn, and they will become independent. Craig is now 18 and he is headed to Baltimore Maryland for 2 years! I am so excited for him, but I will worry. Its gonna happen haha. But I also know he will be amazing and that he has learned to live this T1 life.
He is such an inspiration to me and all who know him. They will do amazing things.. and part of that is because of the late nights, lost hours of sleep and endless worry their parents endured! Be strong and know that you are doing the most important work! You might not be the same person you were before having T1 in your life, but you are more amazing and inspirational, I promise you that! We are forever changed. We may have bumps in the road, but we are changed by the inspiration, bravery, strength, and determination of these T1 Heroes!