Wednesday, June 24, 2009

Pink Elephants and The Promise of a Cure

I'm not the type to just accept what I'm told without question. I try to think for myself as much as possible. This was, to some degree, a cause of annoyance for my God-fearing Mother who would become exasperated when, growing up I would ask some pretty bold questions with regards to religion. When her answers to my questions would leave me with still more question and her with a dwindling supply of answers, she would resort to telling me that I must just "have blind faith." That one never sat well with me, much to her chagrin. We live in a world where too many of us swallow information we are fed without question and never use critical thinking skills to discern how accurate, relevant or credible that information is. I have been known to hold some rather realistic (some might say pessimistic) views about the ways of the world.

As a nurse and upon the orders of physicians I have doled out more pills and medications than I care to admit. A problem is perceived, a doctor is consulted, a prescription is written and another pill is added to a patients medication profile. The more pills I administered the more a nagging question kept creeping up; just how necessary and effective are all these PILLS!? And furthermore, just how rich are the pharmaceutical companies getting off of people who never ask that question but just trust their doctor to be doing what is necessary and effective?

Needless to say I am not one to run to the doctor on a whim. And I only take my children to see a physician when I am certain the symtoms warrant it. I'm well aware of the serious dilemma we face with regards to the overuse of antibiotics and I'm sure that problem has been exacerbated by people, especially worried parents, who insist on taking their children to the doctor for every little sniffle refusing to leave without a script for antibiotics. I am very suspicious of the pharmaceutical industry and so it galls me that, until (unless) a cure is found I am at their mercy with regards to my little girl's very real need for pharmaceuticals. And not only does she need insulin, she requires a long list of other medical supplies to remain healthy. And in the years to come she is liable to require even more pharmaceuticals to maintain her health like blood pressure and cholesterol lowering meds. At the risk of sounding cynical, the pharmaceutical companies must view diabetes, and indeed all chronic conditions as their "cash cow". The money they make and will continue to make in "helping" people to "manage" their diseases, provided no cures are found must be far more than obscene.

So where, may I be so bold as to ask, is the impetus to find a cure?

Now, having a daughter with type 1 diabetes puts me in an interesting position, in light of my views. On the one hand, I have significant doubts that human kind will ever see a cure for any of the handful of diseases that are presently "treatable" with a lifelong reliance on pharmaceuticals and medical devices. On the other hand I am compelled to remain hopeful that a cure will be found and made available. The notion that my beautiful baby girl is destined to live her entire life "managing" diabetes is almost too much for me to bear. I must remain hopeful, in spite of my realism; in spite of my cynicism.

This year for the first time I did what every parent of a child with diabetes does. I, along with my dear family, some close, supportive friends and a slew of other heart-broken parents "Walked To Find A Cure" for my little girl and every other person, young and old, who has to live with type 1 diabetes. I petitioned friends and family for pledges to aid in this quest. And as I did this I thought of all the parents who were drafted into this war before me. Parents who's children are now grown, living independently, taking full responsibility for their diabetes. These parents had the same wide-eyed, innocent belief that a cure was "just steps away". And year after year they went through the motions, sought pledges, donned the runners and walked. And hoped.

I would like to talk with a few of those parents who are veterans of this seemingly endless battle. Do they still maintain the same hope for a cure as they did in the first few years after their child's diagnosis? And what about all of the children who are now grown? Do they hold on to a strong faith that their promised cure is close? Or do they look at us, the new recruits with a mix of compassion and empathy for the wide-eyed innocence we possess, knowing it won't last. It can't last. One can only believe in the promised land for so long before the repeated disappointment wears one down and breaks one's spirit.

I apologize for what seems like a very negative post. I debated long and hard about how and if I should broach this subject. I know as parents we need to hang on to hope. It's too painful to contemplate what I am suggesting. Sometimes I wish I could just take my Mother's advice and hold on to "blind faith." But this has been weighing on my mind since my daughter's diagnosis. And I'm not the kind of person to subscribe to a blind, unquestioning belief in anything. I can't be alone in feeling this way. And I can't ignore the big pink elephant standing smack-dab in the middle of the room anymore.

Wednesday, June 17, 2009

Making Connections

We went out for supper a couple of weeks ago. No where fancy. Just a place where I knew they had nutritional info available and there were some healthy, low fat choices. This particular restaurant has the added bonus of a treasure chest my girls can rummage through to choose a toy while Mom and Dad pay the bill.

While we sat perusing the menu I proceeded to perform our pre-meal blood sugar check on Jenna. Enter our server--a young woman named Jen, about 20 years old. She sees me squeezing a drop of blood from Jenna's tiny finger and says with a great deal of genuine sympathy "Oh... she has diabetes? That makes me so sad to see little ones having to deal with this." She then proceeds to remove her own insulin pump from it's hiding spot in the waist of her black work pants.

I nearly leaped into her arms, the poor girl.

"OH MY GOSH!! Jenna's a pumper too!!" I blurted out with little regard for the other diners present or how Jenna might feel about me 'outing' her. I admit, I could have played it a bit cooler. But I figure I'm still somewhat of a rookie at the whole culture that is diabetes. I asked Jenna if she wanted to show Jen her pump too. Jenna was a little guarded but after a moments hesitation while she assessed the situation and realized she had something in common with this person, she unzipped her pump case and somewhat proudly showed off her pretty pink pump.

And so began a dialogue with this very good natured young woman who just happened to have type 1 diabetes and was by chance our waitress that night and just happened to arrive on the scene while I was testing Jenna's sugar. We discussed pumps, diabetes camps, which she highly recommended for Jenna when she is a little older, endo appointments, her rebellious teen years and other stuff 'diabetes'. She assured me that Jenna is going to be just fine with this. I could have cried when she said this to me. Even now as I recall her saying it I get emotional.

The bond that diabetes creates between people who are otherwise strangers still amazes me. It is created out of a need to connect with people who understand the demands--the relentlessness of this disease. Because as people with type 1 diabetes and the families who love and care for them know, it is something that must be lived, 24-7 to be appreciated for the challenges it presents and the physical and emotional chaos it can cause.

Thanks to all the 'Jen's' out there for your compassion, willingness to share and offer encouragement and to simply say "I understand." That includes all you bloggers out there who share your journeys with diabetes online whether that journey is as the parent of a child with diabetes or as an adult living with the disease. This is one Mom of a child with diabetes who is incredibly glad you're out there.

Tuesday, June 9, 2009

A Year To The Day

Today was a day like any other. Nothing of great significance happened--the usual routine. It's what happened exactly one year prior to today that makes this day significant for me and my family. Jenna was diagnosed with Type 1 Diabetes 365 days ago and my maternal heart broke like it had never been broken before.

One year ago tonight I had just settled my girls to bed and James had stepped out to purchase more night time diapers for Jenna--as she was using an ever increasing amount of them--when the phone rang.

I remember the sound of the physician's voice on the phone that night, so kind and full of compassion, enhanced by a comforting Scottish brogue. She had placed an urgent call to me regarding the results of a random blood sugar that had been drawn on Jenna that morning at my request. I knew she had to be a mother too as she was genuinely sympathetic to my anguish while she told me I had to bundle up my two year old baby and go to the hospital emerg where they were expecting our arrival. I asked her if Jenna's blood sugar was high. Her reply was heavy with regret when she said "yes dear." I asked her what it was. She wouldn't tell me the lab value but only said, with still more regret "...very high, dear." I sobbed uncontrollably.

James came home moments after I hung up the phone and I had to tell him our baby was in trouble and we had to get her to the hospital right away. I remember pacing non-stop and repeatedly hitting and kicking the couch with all my might while James called our neighbours to come stay with Jazmine until his Mom could make the hour drive up island to stay the night. I couldn't stop hitting and kicking. I had to release the pain somehow. I was so pissed off. I felt cheated on Jenna's behalf. I knew what this diagnosis meant for her. I knew that life would never be the same. And she was so very young--still very much my baby.

I remember during the weeks and months after Jenna's diagnosis having a heartache that took my breath away each time I would remember a time or event before her diagnosis. It was such a painful realization; knowing that she would never again start a day without a blood sugar check, that she would forever be dependent on pharmaceuticals for her very survival and that simple viral infections meant potential hospital stays. I grieved profoundly for the simpler days before her diagnosis when my daughter didn't have any broken organs and her body hadn't yet betrayed her. But those days were gone and knowing that left me feeling desperate for the passage of time to help ease the pain of remembering as only the passage of time can. I kept my eyes firmly fixed on the one year mark. I knew that getting through all the 'firsts' would bring about a healing acceptance that I so badly needed.

A year has passed. Acceptance has taken place. Jenna has had to tap into reserves of courage and strength that no two year old should ever have to. And we, as a family, have had to adapt to our new way of life--of carb counting, blood sugar checks, boluses and corrections, walking the fine line between hypo and hyperglycemia on our own personal, lifelong quest for "control".

But we are grateful. Our girls are thriving. Life is still good.

And life goes on.