Carter’s Story

Carter, in the PICU - November 21, 2013
Carter, in the PICU – November 21, 2013

It had been a rough couple of days, vomiting, fever, extreme thirst, immense urination.  Though diabetes was never a factor in mine or my husband’s family history, as my 17- month-old son Carter struggled with these symptoms, I worried that diabetes might be rearing its ugly head.  I immediately took him to Urgent Care. Upon being seen I made mention to the doctor that I was concerned about diabetes and her question to me was: “Does diabetes run in you or your husband’s family?”  When I replied no, she looked at his throat, assured me that it was a virus and to keep him hydrated with Pedialite, Gatorade, Jell-O, and have him on the B.R.A.T diet and in a couple of days he would be fine.

The following Wednesday, as the vomiting continued, I left for work with a heavy heart filled with worry.  When I arrived home, my husband gave me the run down of the day and let me know that Carter had stopped vomiting.  When I walked into our living room and saw our son laying on the couch, propped up by pillows, unable to lift his own head I broke down into tears and said, “We’re going to the Emergency Room.”  Once in Triage in the ER, I sat with my baby, so lethargic and gaunt but still fighting.   When the nurse attempted to get a blood sugar reading and couldn’t she turned to me and said the phrase I never wanted, nor was prepared to hear, “I think your son is diabetic.”  Immediately, I started sobbing.  I have never felt so helpless in my life. We were whisked away to a room and he was placed on drip fluids.  I gripped my son in my arms and as I lay him down on the table to be poked continuously, I felt my heart rip out of my chest and be laid on the table with him.  As my husband and I watched our son be worked on by a multitude of doctors and nurses, one nurse finally came up to me and notified me that Carter was to be air lifted to a Children’s Hospital in San Diego (70 miles away).  I asked if one of us could ride with him and was told due to health regulations we could not.  Fear gripped me as I struggled with the feelings of abandonment my son would feel without me by his side for the flight.  How scared he would be, and alone he would feel with strangers. I had to acquiesce; I had no choice.  I was told by the staff in the ER that Carter was in severe DKA (Diabetic Ketoacidosis) and it was expedient that he get to the Children’s Hospital right away in order to save his life as he was in critical condition.  My husband and I kissed our baby goodbye and headed home to drop our four-year-old off with family, and pack bags for a week that would forever change our lives.

My husband and I arrived at Rady’s Hospital two hours later and Carter was stable, but struggling.  The doctors came and spoke with us, and since he was in such severe DKA he was going to be moved into the Intensive Care Unit.  We spent two days up in ICU where we learned in-depth what DKA meant and watched our son’s body struggle to balance itself out while on a continuous insulin drip.  Finally, after two days, he was taken off the monitors and allowed to eat.  Just prior to eating he received his first subcutaneous injection.  He didn’t like it at first, but once it was over, he was fine.  He ate and we were moved to the pediatrics floor where we stayed for the next three days and learned all there is to know about Type 1 Diabetes and A1C levels.  As we learned the severity of DKA, and the detriment of measuring carbs and of being insulin cognizant, I couldn’t help but still feel the enormity of change and lack of control I was to face once we left the hospital and headed home.   Burdened with a human resistance to change, and an overwhelming sense of duty and responsibility we walked out of the hospital a new family.  As I clutched the bags of my son’s belongings, I looked at him in awe of his courage, strength and survivor’s spirit.  He had been through hell and back, his life changed in an instant bringing with it shots, finger pricks and more blood draws than a healthy adult has ever seen, yet when the fresh air hit his face he became alive.  He was so grateful for all of the small things and no doubt excited to get home to get back to his normal life.

I watched his devastation as I administered his first shot in our kitchen at home.  I did my best to make it a positive experience, but knew being such a novice I was so transparent.  As the days went by, my comfort level grew, and the fear that crippled me in the hospital was almost gone.  I remembered that as his mother I would do anything for him: I would gladly take the place of his pancreas for as long as I needed to ensure that his life would be a long and full one.  I decided early that diabetes was going to fit into our life, not the other way around.  We involved our four-year-old daughter from the onset of this diagnosis.  I brought her to the hospital once Carter had been moved to the pediatric floor so that she had a firsthand glimpse of what life would be like once we all came home.  Though life has changed, I am more carb conscious; I administer shots; check blood glucose levels continually; worry when he is sleeping and constantly check on him through the night.  He is still my little boy, just with more buttons.

The one piece of advice I can give to a newly diagnosed family is to grieve.  Though this is a manageable disease, there are days that are riddled with difficulties and trials.  I have learned more in two months about diabetes and life after a diagnosis then I learned in all my years of schooling.  Maybe it’s because there is more at stake now, and misjudging is more costly these days.  All I know is that through all the disappointment, the pain, the anger and fear, there is life after a diabetes diagnosis.  Though blood sugar highs and lows are frequent and a part of our future, I have learned so much through my son, post diagnosis.  My son is probably the bravest person I know. His strength is unwavering and his patience with me as I struggle to accept it all is astonishing.  I have found peace in allowing myself the bad days when I will cry over nothing, or look through pictures pre-diagnosis and obsess over the things I should have seen in order to have spared him a hospital visit.  The grieving process is different for everyone and we don’t need to be strong every minute of every day; living with a child who has diabetes is frustrating and heartbreaking, but also extremely rewarding.  Through this experience, my family has grown closer and stronger, and my son has a newfound confidence in my ability to care for him.  Diabetes has shown me how to take every day as it comes, love stronger, always be present, and, most importantly, learn how to listen to your body (or in this case, my son’s body.)  Getting a Type 1 Diabetes diagnosis is terrifying, but it’s not a death sentence. It is a second chance at life that evokes an overall sense of understanding oneself and having a healthy relationship with food encompassed with frustration, aggravation, anger, sadness and awe at one’s capacity to fight and ultimately survive.

2 thoughts on “Carter’s Story”

  1. Thanks for sharing Carter’s story! It’s amazing how we work so hard to keep everything in their lives as ‘normal’ as possible even though this disease changes everything.

  2. Aliana, you are so right. Some days are harder than others, but in the end it’s all worth it. As long as our diabetic babies are able to live life as normal as possible, then we are doing our job. 🙂

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