In January 2005, my family’s life changed forever.
Up until that moment, we had led a happy and healthy life with minimal issues. Both my kids – my daughter, Charlize, and my son, Sean - had grown normally, developed right on schedule and hit every milestone. Charlize was a typical toddler and my pregnancy with her young brother, Sean, was also typical.
We entered our new world AFTER Sean was born. His first few days of life were difficult, but we managed to pull through. Doctors could not control his blood sugars and had no idea what was going on or why. When we finally took him home, I was told to learn about Type 1 Diabetes because Sean would eventually develop it. What a scary thing to deal with when you are bringing a baby home for the first time! Over the next few months, I researched symptoms – frequent urination, excessive thirst, fruity smelling breath, a lack of energy, not feeling well, weight loss and mood swings - however, I tried not to worry too much. We had no history of Type 1 Diabetes in our family.
In July 2004, we moved from California to Arizona. It was a big adjustment for everyone. We had a lot of change going on in our lives and my very sweet-loving daughter was surely showing the effects.
I noticed Charlize began drinking more than usual, yet I honestly just chocked it up to the heat. Afterall, we were in the middle of summer. Then, she started to have accidents even though she was potty trained. She also developed this Dr. Jekyll and Mr. Hyde type personality that became a bit much to handle. I blamed all that was going on our lives at the time – the move, her new role as a big sister, my in-laws moving in with us – as the factors triggering my three year old’s behavior.
By late December, Charlize’s accidents increased in frequency, not just daily but several times a day and night. I did everything I could to keep from thinking about those Type 1 Diabetes symptoms, but my gut instinct kept gnawing at me.
On January 3, 2005, I came home from work and found Charlize not looking well and asleep on my bed. Every five minutes, she would wake up, rush to the bathroom and then return back to my room only to fall asleep again within seconds. I could no longer deny it. Charlize had something serious going on with her kidneys. I scheduled an appointment with her pediatrician.
Finally, tests confirmed what I had feared – Charlize had diabetes. Three times in a row, her blood sugar on the glucose meter read "HI," meaning her blood sugar levels was too high to read. Her ketene levels were also too high to read. We had her taken to Phoenix Children’s Hospital where doctors told us Charlize’s blood sugars were over a thousand and she was in DKA (Diabetic Ketoacidosis). Had we waited any longer, we most likely would have lost her. Those next four days were spent learning all about diabetes alongside doctors, nurses, diabetes educators, nutritionists and child life specialists.
A week after we were discharged, we celebrated Charlize’s fourth birthday.
It was during our time in the hospital that we first learned about Starlight and its Fun Center and Great Escapes family activities program. Here was an organization whose focus was making things less scary for kids and families going through situations like Charlize’s, so I filled out an application.
And when Starlight finally did come around – it could not have been at a better time.
One day, I opened up my email and found an invitation from Starlight to the entire family to attend Sesame Street Live. I was skeptical at first, but was blown away by my experience at the event. I met so many families that shared our same concerns. We all had medical challenges in our lives. We all had other children. We all understood the emotional toll illness has on an entire family. That night at Sesame Street Live, my kids got a much-needed break from everything. They laughed. Smiled. They got to be excited about something.
And our magical experiences at Great Escapes have only continued. We have been able to go the Wild Life World Zoo, the circus, hockey games, basketball games and more. We have been able to participate in some incredible holiday trips and celebrations. Every time I open my emails from Rebecca at Starlight Arizona and tell my kids we have another Great Escape scheduled, they get so happy and bounce a scream with pure joy.
Seven years have passed since Charlize’s diagnosis and things have become easier. We are in what we call our "new normal." However, the phase still has its share of challenges. Charlize has to get her finger poked several times a day. She is on an insulin pump that gets changed every few days and a continuous glucose monitor to help us keep her numbers in control. We have to count every carb she eats. We also still have to face hospitalizations and doctor visits.
Through it all, I have told many families all about Starlight and have been able to get many of them to join. I have to say that the staff at Starlight Arizona is incredible. They get to know families personally and you can truly tell they love their jobs. I can’t thank Starlight and all its sponsors and donors enough for all the priceless memories they have given me and my family.
Starlight Mom Chandra