I feel as though I know you even though I don’t. Like you, my life was turned upside down when my youngest son, at the age of 5, was diagnosed with Type 1 diabetes (T1D). I still feel, viscerally, every moment from the evening I found out, and all the crazy things I thought and felt after. What one cannot understand until they experience it like we have is the total desperation, depression, anger, and fear a parent goes through after a child is diagnosed with T1D.
As most people know nothing about this disease, or their only reference is a family member with Type 2, the isolation can be debilitating. People saying things such as “at least he doesn’t have cancer,” “everything will be okay,” “you’ll be fine,” “he’ll be fine,” and “just eat healthier and exercise” can drive a person mad. But, then I would realize that before my son was diagnosed, I too was just as ignorant about this disease as everyone else. At the beginning, this didn’t numb the pain I felt at the insane comments; but now, with the benefit of time, I can tell you … you learn to ignore and brush these comments off.
Mostly because, along with all the crazies, there will be a cherished few who will ask and pry out of true love and concern. They’ll want to learn and sit over wine with you for hours just listening to what having a child with T1D truly means for you and your life. They’ll understand and empathize with the fact that your life will be drastically different, and they’ll help you realize that it will be wonderful and perfect even though it has changed.
What I wished I had known at the beginning, when I couldn’t drag myself out of bed, when I broke out in tears randomly, when I was scared half to death that my child would die each and every day and night, and when I broke down and realized I needed a therapist to help me out of the fog was that along with all the pain and sorrow would be wonderful things as well.
The teachers that dropped everything to learn how to take care of your baby so he didn’t have to change schools. The stranger d-mama who supported you in the beginning and welcomed you into her home so you didn’t feel alone. The friend who called to check in and worried about you. The friend who did research on medical care for your son because she loves and cares for him so much. The millions of people who spend their time and money fundraising and donating to various organizations focused solely on finding a cure or a better quality of life for children and adults with T1D. The school that ensured you had a great teacher and nurse to care for your child when you are away from him. The bond now shared with your spouse and close family — the only ones that truly know what life is like these days. And most importantly, the love and joy I feel each and every minute as I see my little boy be brave and strong and resilient in a way that even I can’t be — I’ve never been so proud!
So, my advice to you, parent of a child newly diagnosed — reach out, call people and share what life is like. You will lose friends (I know), because you’ll mainly lose time and be forced to prioritize who is most important in your life, but this in and of itself is a gift. Find other parents who understand your new normal, and find friendship and understanding and silence in them. It’s amazing how much peace this will bring. And get help professionally, if like me, your fear or anxiety take over, it’s not admitting failure, it’s admitting strength.
And know, that during your sleepless nights bolusing for highs and treating lows, and staring at your beautiful son or daughter when everyone else is sleeping, I am thinking of you and sending all the positive thoughts and support your way. And if you need anything, anything at all, know that I (and bunches of other d-parents just like me) will drop everything to help you, so just ask. Reach out. And don’t stay silent.
Love and light,