Once upon a time, a little boy was born, my youngest son, we will call him B. Five years ago,on November 27, 2006, two months before his third birthday, he was diagnosed with Type I Diabetes.
Looking back, my memories of the time leading up to his diagnosis play as a vignette. Sometime in the late summer, there was a violently vivid tantrum. It took place on the front steps and lasted far too long for my good-natured baby. That was the first bright red flare that shot out into the darkness; into the dark corner of my being that always knew he was “too” perfect. The autumn brought more out-of-character moodiness and outbursts. Then I began to notice the Sippy-Cups, the ten “half” empty cups I would collect at the end of a day. Now completely empty. The plants and my spirits began to wilt.
It was the Monday after Thanksgiving that we took him to the doctors to voice our concerns. The nurse checked his blood glucose level. My memory of that day, that moment is still so clear. The reading: 517. “What is normal?” I inquire. “80-150″ she replies. I am unaware of the expression on my face that has now registered concern with both my two-year-old and the nurse. “Are you okay?” she asks. I never imagined how far from okay we would be for quite sometime.
The hospital was surreal. The nurses and doctors casually explaining and teaching us how to hurt our baby in order to keep him alive. My baby crying as I hold him in my arms, rocking and singing. He wants his father to come and rescue us from this prison. I do not have the ability to explain to him that the walls of the hospital are not our prison. That a faulty pancreas is the villain and his pain is the hero. Not one person mentions that this might be a sizable adjustment for us.
The hospital attempts to expedite our departure. I push back. I haven’t been able to force myself to give my son an insulin injection yet. My husband works nights. Who will hold him while I torture him with necessity? My stunned silence buys us another day.
When we arrived home from the hospital I was in shock. One week, 7 days prior, our life, his life was vastly, drastically different. We brought up the Christmas tree. My husband and the boys hang up a couple of ornaments. I can’t bring myself to participate… We sit, my husband and I, after the boys have gone to bed. The tree, lights shining, three lonely ornaments…me with tears shining, pouring down my face. My heart is shattered… last Christmas we were in such a different place.
Every moment of our existence now took the utmost focus and concentration. Sleep deprivation began to wreak havoc on our lives. The days were like giant ocean waves. We would struggle to gain our footing and breath from one, only to be knocked down by the next. The constant stream of adrenaline made everything seem as though it was happening in slow motion.
It began to feel as if I was observing instead of participating in my life. I felt detached from everything and everyone.
I simply couldn’t spare the extra energy it would take to try to convey to someone what our reality consisted of on a day-to-day basis. Even if I did, there was no way that they could begin to wrap their heads around it.
Pardon my very obscure reference to “Mrs. Frisby and the Rats of NIMH” (“The Secret of NIMH”). I suddenly felt like one of the rats from this book/movie. I felt like someone picked us up and injected our lives with Diabetes. And I do not select the word “injected” to be funny or to create a pun of any sort. Perhaps I have just been around one too many syringes lately… I felt as though we were all going through all of these painful transformations that enabled us to understand a language, a world that was completely foreign to us previously. Now that we had arrived on the other side of this metamorphosis, I began to realize the immense distance between us and those who are not also on this journey…
I stopped sleeping. What was the point? We checked his Blood Sugar every two hours. I spent the time in between trying to make some sense out of the chaos that our life had become. I moved into a constant state of hyper-vigilance. We tested, measured, calculated, and treated. The Holidays & B’s Third Birthday loomed ahead and I was frantic. I attempted to make them as “normal” as possible. I worried about high blood sugars and all the damage they were doing to his little body. I worried about low blood sugars. Can you imagine wondering if your baby boy was slipping into a coma during the 120 minutes between glucose checks?! (actually, if you are reading this, I suppose there is a pretty good chance that you can.) Seizures, brain-damage, death; all overwhelming repercussions for missteps. I was also concerned about his brother, my older son, such a sweet and sensitive boy. I could feel his sadness, frustration, and confusion as the weight of his brother’s illness settled onto his little shoulders. Incredibly smart and tolerant as he patiently waited until his brother’s needs were met first.
No matter how hard we tried, we could not manage to get his numbers under good control. There was no real pattern or regularity…everything was erratic. We would have a rare day, where most of his numbers would fall within their target-range. Then we would get up the next day, follow the identical protocol and end up with completely different numbers.
I began to spend a lot of time on Diabetes Message Boards reading the posts, questions, and answers. I learned so many valuable things. I used this knowledge to formulate questions for my son’s Endocrinologist. When I didn’t get the answers that I wanted, I knew it was time to switch medical teams. The difference was night and day! Who knew that you could dilute insulin to make dosing for a little person slightly more manageable? Our new team did! Up until this point, if we were dealing with high blood sugar numbers, we needed to check for ketones with strips that measured the levels in urine. With a child in diapers, this meant putting cotton balls in the diaper and waiting. Eventually squeezing the saturated cotton balls onto a strip, we would get a slightly less-than-accurate reading. I inquired about a meter that I had read about that used blood to test ketone levels when necessary and gave results in moments. They handed one to me, immediately.
Amongst the mild relief that was sprinkled ever so delicately with hope, was a tremendous amount of trepidation. A whole new team plus a whole new protocol equaled a huge new learning curve. Enter exhaustion.
The summer of 2007 brought with it much angst and separation. Still struggling for the ever-elusive control of B’s blood sugar, we made the decision to start him on an insulin pump. This was an involved and complicated process, requiring us to drastically change the whole regimen for a third time. We hadn’t slept or existed as anything but a poor substitute for a pancreas in eight months! There was no one there. We were isolated, completely alone… It got ugly.
It became vital that I conserve any excess energy for our immediate family unit. It became clear that anyone who was not 100% on board, anyone that was a hindrance and not helpful had to be thrown from our virtual lifeboat. I was raw and reduced to my most basic instincts. I stepped in front of my family, drew a definitive line, and defended to the death anyone that dared to cross it.
I thought that the first year was the worst. Every day, week, holiday, milestone…was the “first” in our new reality. Then the anniversary of the diagnosis was looming in the not-too-distant future and everything became magnified, more frightening. There were no firsts, there was an eternity. The reality was permanent.
In October of 2007, serendipity found us having dinner in proximity to another couple on Martha’s Vineyard. She was a nurse and noticed the complexity of our situation. She suggested a book, “The Challenge of Childhood Diabetes: Family Strategies for Raising a Healthy Child” by Laura Plunkett with Linda Weltner. I immediately ordered the book upon returning to the mainland. I cried through a majority of the book. On page 41, however, the tears really began to flow.
“I was aware of ignoring feelings just below the surface, but I just kept going. Life seemed overwhelmingly fragile and frightening. I dreaded getting out of bed. A few days later, I was browsing on the Internet when I came upon a brief report on Post-Traumatic Stress Disorder in parents of children with newly diagnosed Type I Diabetes, which put my experience in a new light. Researchers had studied the parents of thirty-eight children with newly diagnosed Type I Diabetes by giving them the Post Traumatic Diagnostic Scale six weeks after diagnosis. They found that 24 percent of the mothers and 22 percent of the fathers met full diagnostic criteria for current PTSD. In addition, 51 percent of the mothers and 43 percent of the fathers met criteria for partial PTSD. The age and gender of the child, socioeconomic status, family structure, or length of hospital stay didn’t seem to make a difference.”
Until this moment, not one person had given me permission to grieve or allow space for my experience. I had felt so isolated and angry. I began to research and understand The Kubler-Ross Grief Cycle. Finally able to ask for and receive help, I sought out a therapist and medication. This bought me a year of numb.
I don’t remember much of that year…I kept my son alive. I kept my family alive, barely. Perhaps it was the meds or a self-preservation mechanism that enabled me to block out every unnecessary emotion or action. We survived. We certainly did not thrive.
It has been a long, hard road. B has endured more than 18,250 finger sticks, over 2,000 insulin injections, and upwards of 486 pump infusion sites. Diabetes entered our lives like a sudden, devastating storm. There were some casualties, some survivors, and some that got caught somewhere between.
I can not recall the exact circumstance that convinced me to let go of the antidepressants….I believe I simply recognized that in order to protect my son, I needed to be in touch with all of the emotions that the drugs kept at bay. I finally let all of the turbulent feelings come crashing back in. If it weren’t for my practice of Yoga, I don’t know that it would have been possible for me to do that or to gain the amount of perspective that I have. It has provided me with focus and strength and peace. Even when our world was spinning wildly out of control, my mat and my breath were my anchor. I will be forever grateful for the practice of learning how to be present in every moment and to never take those moments for granted.
That is a practice I learned from Yoga but also from B’s Diagnosis. Each hug, each giggle, each smile is unimaginably precious. When I catch myself rushing or not giving my full attention, I stop and remember how lucky I am to be having this moment. I think about how many important moments got lost in the shuffle of those days that were clouded by diabetes and depression. I spend a great deal of time staring at my beautiful babies and I am filled with gratitude that I have been given this amazing opportunity to be their Mom.
B is now in second grade and he loves school!. He has an amazing team of nurses, teachers, doctors, a counselor, and an administration that seek out and provide the best environment for him. We are so very blessed that he can be safe and participate in his education like everyone else. Diabetes has not gone away, nor will it without a cure. Some days and certain situations are harder than others. I have learned that there are a tremendous amount of little things that simply do not matter. I have also learned to fight like crazy for the things that do. We have simplified many aspects of our lives so that the complicated pieces can be dealt with more easily. B is an amazing little boy. He is strong and brave and kind. At one time, I thought that this part of the story had to be separate, I know better now. It is all a part of my journey, of our journey. Falling in love with each other a little bit more every day and living happily ever after.