As I write this, it is December 30, 2016, 10:03 pm. The final day of the year, and the start of the new year, are just around the corner. Already my Facebook news feed is blowing up with posts from those reminiscing about 2016, as well as their hopes for 2017. I confess that I am looking ahead to 2017, feeling rather discouraged. It’s not that I’m being pessimistic, but more that this year I am looking ahead with realism more than optimism.
We started 2016 with the hope that this would be the year we would find out what was causing our daughter’s GI issues, and be able to treat it. While we do now have a better idea of what is wrong, we are still no closer to having it treated. In fact, things are worse now at the end of 2016, than they were in the beginning. Attempts at treating her condition through medicine have fully failed our daughter, and it looks to be about a 99.9% certainty that major surgery looms on the horizon for 2017.
It’s a bit discouraging to know that 2017 will more than likely not be any easier than 2016 – and 2016 was a rough year. We racked up over 10,000 km for various medical appointments (of which there were over 30), our daughter went through an in-depth therapy evaluation at an Autism Rehab center, 3 full general anesthetics, an MRI, a rectal biopsy and a dental surgery. She also had 6 or 7 x-rays, a holter study, a motility test, and 4 UTIs. Doctors tried her on a total of 8 different bowel medications. She received a soft diagnosis of a genetic disorder (confirmation via geneticist pending) and started a new social skills program with a new OT. She ended the year with a medical team which includes a general practitioner, two pediatricians, a gastroenterologist, rheumatologist, general surgeon/urologist, psychologist, dietician, occupational therapist and social worker.
Despite our initial hopes otherwise, she has ended the year fully incontinent and in Pull Ups full time. We have watched her heart break as other children tease her. We have watched her tiny belly bloat until you would think it might pop. We have watched her curl up on the floor whimpering in pain. At other times we have watched her double over, crying, almost screaming in pain as medicinal-induced spasms rack her belly. We have had to watch her cry, and beg us to tell the doctor’s to perform surgery to fix her, so she doesn’t have to, “wear diapers any more, take any more medicine and so my belly will feel better.” We have ultimately watched our initial hopes for 2016 be dashed, and we have been rendered to the point of feeling completely helpless.
Unfortunately, while we did receive a few answers in 2016, we were still left with more questions and many unknowns. Granted, we know there will be more pain, more invasive testing, more time in hospitals and as I already mentioned, likely a major surgery. What we don’t know however, is when will this all happen? What tests exactly? What type of surgery? Or will they try one of the newer, experimental treatments? What will the impact of the treatment be on her life? Our lives? Will she still be able to play soccer? Will she be able to go swimming? How much of a social impact will treatment have on her? Will she end up with a colostomy bag that will lead to more teasing? Will she cooperate with the daily flushes that a cecostomy would bring? Will the treatment even work?
And so, with more uncertainty than certainty in our future, I will start our new year with calls to her doctors, administering medications, keeping stool diaries, changing diapers, and reading medical journals about sacral nerve stimluation therapy, as well as researching the four different surgical options that could be used to treat her condition.
With that out of the way, as I reflect back on the rest of the year, I have to say, despite how it may sound, 2016 was not all bad. Despite all the negativity, we had many, many wonderful moments and made some precious memories. Some things were bigger like the impromptu weekend get away we took to St. Andrews and New River Beach. Or our family trip to New Hampshire, where we rented a trailer in the White Mountains for a few days and enjoyed the local theme parks.
Then there were the numerous “smaller” moments: the simple, every day moments that to me are the most cherished. Moments like soccer practices and dance recitals, going as a family to get our Christmas tree, silly moments of dress up and impromptu singing and Christmas plays, trips to the local park and fishing in the stream, snowmobiling in the back yard and snowboarding at the local ski hill.
There evenings as a family cuddled on the couch watching a tv show together; there were bedtime stories and bedtime snuggles, there were afternoons spent baking together in the kitchen or playing outside on a sunny day. There were the backyard fires in the summer evenings where we roasted marshmallows and there were birthday parties, Easter, Thanksgiving and Halloween. There was the lemonade stand in the spring, and picking blackberries in the summer. Days of going to the farm market for a sausage and maple candy.
And of course, there were the countless hours we spent homeschooling the children. While there were obviously “those” days (the ones where I wondered why on earth we ever decided to do this in the first place?!), the vast majority of our days homeschooling were fun and rewarding. Our avid-reader son seems to have finally conquered his hatred of math, and our math-fanatic daughter has become a blossoming early reader. We enjoyed field trips, projects and experiments, reading great literature and examining classical art and music.
More than once this year I have been so grateful that we were led by God to homeschool. I can not imagine having to deal with all our daughter is going through, if it were all compounded by dealing with the public school system at the same time – dealing with IEPs and ensuring she has the right support, having to make up for countless missed days and the teasing our daughter would undoubtedly endure.
Being home together as a family has allowed us to support our daughter, and each other, in ways that would not be possible otherwise. The children have an incredibly strong bond, and my son is developing an empathetic maturity well beyond his years. Instead of being left behind with various family members when we have to travel for appointments so he can attend school, we get to travel as a family. We try hard to make each hospital trip feel like a “mini-vacation” to the children, by staying in a hotel with a pool, an experience which thankfully my children are still young enough to think is second only to Disney World.
And so, this New Year’s, I won’t say that I hope 2017 is going to be a better year than 2016. I’m being realistic. But, what I do hope, is that 2017 is much the same as 2016 – a year that while filled with many moments of worry, pain and uncertainty, will also be filled with even more moments of the simple, every day pleasures of life. For they are the moments that give life it’s beauty among the chaos.