18/09/2017
I'm finished with the illustrations for my children's book but still need personal stories of triumph to share with children going through a tough time.
I need your help to help others...
Please read the story below and see if you, or anyone you know, have one similar to share with children to help them make it through a tough time in life. Your story can be very beneficial to others. But, only if you tell it. My book can be the platform for you to do just that. And, I would be very grateful for your assistance.
The Way Through:
How My Daughter’s Diabetes Transformed My Life
In the spring of 2015 my daughter Lilah was 2; terrifically two at that!! Active, talking, still nursing and trying to keep up with her brother Alistair who was 6. Out of nowhere, Lilah began having what we thought was the developmentally normal behavior of throwing tantrums. I had seen my older son throw tantrums but Lilah’s were intense, filled with rage and nothing like I had seen before. She had also began to have an insatiable thirst, drinking everything she could. Even drinking the bath water! All leading to her wetting her bed at night after having been potty trained already. Lilah also seemed not to be gaining weight or growing in the previous few months. I became more and more concerned with her and had no idea what could be happening. At the urging of my mother, who is a nurse, I called her pediatrician’s office to schedule an appointment. Oddly, the doctor’s office didn’t seem that concerned and scheduled us for a visit 4 days later which, happened to be the day our family vacation was to begin. What should have been a fun filled day of leisure for the family turned out to be one of the scariest days of my life. We ended up rushing Lilah to the hospital emergency room where she was treated and eventually diagnosed with Type 1 Diabetes. I couldn’t help but think that it didn’t make any sense as no one in my entire family history had diabetes or anything like it. Shocked, the diagnosis explained some things about Lilah’s behavior but, in no way, could have prepared me for what lay ahead.
I’ve got to be honest, I felt like my largely blessed life had been crippled, that God and the Universe was finally saying “Maura, this is what it has taken to bring you to your knees, to show you suffering.” I raged, I cried, I gave Lilah 10 injections a day, counted every carbohydrate she ate, I cried while nursing her to sleep, and soon found out that diabetes management is a 24/7 job. It plays a part in every activity and event of life and has an effect on everyone connected. I knew acutely that I was in the beginning of grieving the loss of a future for Lilah that would never be. As of this writing, there is no cure for Type 1 Diabetes. She would live with it forever. My mind felt like a very dark place, and I was exhausted. I became hyper vigilant, recording everything she ate, trying to control her diet, counting carbohydrates, camping out in diabetes parent support groups on FaceBook, asking all kinds of questions and schooling myself as much as I could on the disease. The thing about diabetes that can wear you down is that you rarely, if ever, get a break from it. And Lilah certainly gets zero breaks. No matter what happened though, deep down I knew that God would watch over us. That, as a family, we would stay united and that we would find the best possible way to balance the needs we all have as individuals.
It’s been two years (as of June of 2017) since Lilah was diagnosed with Type 1 Diabetes and, these days, life has a bit more ease. Gone are the tantrums, for the most part the protests around injections, pump site changes (she wears an insulin pump all the time now), and blood sugar checks. Lilah goes to daycare, where they take good care to keep her safe. I am working again, after a brief hiatus, and find it hugely helpful in keeping my mind OFF diabetes when Lilah is not in my care. We don’t get a lot of sleep, but we are managing as best we can. We don’t avoid activities due to diabetes— diabetes comes with us, and we plan for it. We don’t avoid any particular foods. That is a battle I had to lay down long ago. Lilah is a happy, smart, intuitive little 4.5 year old girl, who loves dinosaurs, tormenting her older brother, and playing dress up and having tea parties with her stuffed animals. She sometimes says “It’s hard being four.” And, “I have diabetes!” and “I feel low.” These are all wonderful things for her to be able to say— as a child with a medical condition, these are the roots of self-care, and self-advocacy. I call her Lilah Brave Girl, to myself. She is brave without knowing it, and she has been an example to me of how, in the face of an unchangeable situation, one just has to “live with” something, to accept and surrender to what is. And, in doing so, life can still be pretty good, with moments of joy, laughter, play and adventure woven into our days. My hope for others who are facing a chronic illness, whether it is diabetes or not, is that you can find some way, even if it is small, to have freedom, some space in your life, separate from the illness. To see your illness, or your child’s illness, as separate from their Self. I can see my daughter Lilah when I look at her now, not diabetes.
Lovingly,
Maura C.
