Sunday, August 29, 2010
I thought this would be easier than it is. I've seen a number of anniversary letters to Diabetes and I thought it wouldn't be such a trick to come up with some appropriately worded hate mail.
I can say this: I do hate Diabetes. I hate that it's come into my child's life and looms over him like a cloud. I hate that some of life's simple pleasures that we could be taking for granted are now moments to pause and consider the potentially detrimental impact it could have to him. I hate that by no fault of his own, he is now shackled to a vial with no real option otherwise. I hate a lot of things about Diabetes and some of the ways it's changed our lives, especially Jonathan's.
I ended up really struggling to write that nasty letter, and very conflicted about a certain sense of gratitude I feel towards diabetes. We all know the dark side and the danger, the thoughts that jump out at us when we even think about the D word. But I know there are so many wonderful people now in our lives that we never would have met otherwise and some really great experiences that would have been missed. How could I thank something so horrible? I suppose one of the greatest insults you could give an enemy is to say "thank you". I wrestled with that gratitude until I realized that if giving up the good things made Diabetes go away I would, but it won't.
Alas, I have no anniversary letter to diabetes. Instead I played the last year in my head on fast forward.
* * *
A lot has happened in the past year…
As I think back over the last 12 months I see a distinct division between the first 4-6 months and the remainder of the year. I remember D day like it was yesterday; my still 3 year old son sitting on my lap as we waited in the ER to be seen. I remember knowing exactly what was going to happen in the coming hours, but being in such denial that it felt like I didn't know. I remember feeling like I was standing at the edge of a bottomless pit and something was pushing me closer.
In the early morning hours of September 29th 2009, a kind lady doctor came to our son's bedside as he lay sleeping after many pokes and prods to test his blood and told us one word that changed our son's life and our lives forever - Diabetes. All of a sudden there was a painful clarity, no more guessing, no more hoping, just the cold hard fact that our little man was going to shoulder a huge burden for the rest of his life and worse yet, it could eventually end it.
The first days were filled with nurse-educators, doctors, lab techs, social workers, dieticians, and people from the children's life services group. It was a long 6 days, living at the hospital, but I knew Jonathan was in the best place he could be. What started out as a lonely and isolated journey, quickly became filled with so many people who care about Jonathan and want to keep him healthy and happy. It was such a relief and is still a great blessing to have all of these people on our team to keep our little guy in tip top shape. It was pretty scary going home that first night, but I had a lot more information and courage that day than I that fateful night.
As we tried to adjust to our new reality we quickly faced a huge hurtle: school. I was shocked and dismayed at how little support is readily available for young children who can not self-manage (even those that can test and inject are often shunned and deined the simple things they need). I was quickly presented with many "we can't", "we don't", "we won't"s, but I found non of them to be acceptable. It was really hard to keep my cool and try to work with the people who seemed to be shooting down every possibility for Jonathan to attend school like any 4 year old should be able to, but that's exactly what it took - to work within a system of roadblocks and nay-sayers to get a reliable team built. Thank God we did it though. We couldn’t afford to have one of us quit our job to be at the school all day, and it certainly wasn't fair to Jonathan if we were to place him somewhere else and deprive him of that very start of his school education. It was one hell of a ride, but we were lucky and persistent, and we managed to build that team and had a hugely successful year because of it.
Nothing since then has seemed quite so hard. Of course we've had our days. His birthday just 16 days after Dx, first field trip in October, first Christmas of marathon visiting and random eating. Inevitably we had inexplicable lows and highs and some numbers that we so counter-intuitive that we had to test him 3 times to be sure before we could act. There have been nights of hourly BG checks and laying awake wondering what was next. In the end though, Jonathan had a great junior kindergarten year. He was very popular in his class, ahead of the game on a lot of subjects, and highly regarded by his teacher. Followed by a summer of day camp at the school with many field trips to parks, gardens and petting zoos, pools and splash-pads, he got to do everything he would have if he didn't have diabetes. I would attribute that at least in part to a philosophy held by the staff at the clinic and imparted to us early on - Jonathan is a child first and a diabetic second.
Jonathan has had good days and bad days with this. Aside from the constant planning and shuffling, he for the most part deals with his tests and shots like a pro. Of course there are some days he just doesn't want a needle put in him anymore, but he seems to understand or at least accept that it's really not been an option.
The rest of the family has dealt with this in our own ways. My wife is fairly calm and straight forward most of the time, I was the one that freaked, and our daughter was scared for her little brother. My way of dealing with this has been more hands on in terms of being involved with JDRF and community groups. Bobbie has been very supportive of me by not getting too upset that I attend a lot of meetings and functions. I put a lot of time in, as did a number of other volunteers, on our walk. We spent the better part of the spring preparing for it, hosting our family kick-off night, and then having the walk itself. As Family Walk Chair, I spent a lot of evenings working on various tasks related to recruiting and promoting the walk as well as my own fundraising efforts. In June I spent three days in Toronto at the annual general meeting of JDRF Canada which was an amazing experience, but again Bobbie had to hold down the fort and basically be a single mom for a little while. Now I am part of a team in the throws of preparing for our first local Gala this November and we have so much to do in such little time. On the bright side, even though I put a lot of time into these activities I rarely do so on the weekends (except for event days) and I usually keep at least 3 evenings free to family time, so we've been able to balance that fairly well. A few people have asked me why I do this or if my wife gets upset that I spend the amount of time on it that I do. Although she's never been crazy about me going out on my own and leaving her home (especially with the kids), she's never made a peep when it comes to JDRF stuff. As for why I do it? Because I have to. Not because I'm being forced to, or expected to, but because I need to, this is my therapy and the best way I know how to deal. I can't just wait and see.
I know the years ahead will be fraught with pitfalls and peril, but one of the good things of all this so far as I have had the honour of meeting (and "meeting") some amazing people. Some on our clinic team, some on our school team, some on our JDRF committees, some new friends to lean on and learn from, and a lot of people that are dedicated to making a difference and making Diabetes history.
In a few short days we will be attending our official pump training at the hospital. We will have a long weekend on saline to practice and then we go live with insulin. Jonathan will get his wish of some shot-free days. The day after he starts pumping insulin, he starts school. Senior kindergarten. A new adventure with new tools. It feels to me a little like starting over, but sometimes starting over is good.
Welcome to Year 2.