The Four Walls of My Freedom (21 page)

From the moment our plane touched down in Ottawa on August 28, 2011, everything about our family life changed. After five years in London, we were back in Canada for good. We drove Nicholas in a wheelchair van straight from the airport to the Ottawa Rotary Home — a cozy residence where our boy would now live and receive nursing care 24/7.

Over the next two years, Jim would retire after thirty-six years of long hours and high stress in the diplomatic service to find a more balanced life of consulting work and leisure. Natalie would leave the University of Toronto, bound for graduate school at the University of Delaware. I would forge a new professional path of writing and teaching. And Nicholas would explore living independently. He would visit often, but he would never sleep in our family home again.

Planning for our move back to Canada began months in advance. Long conversations with airline officials, intricate scenario planning and complicated packing lists were slowly completed. I began to make initial enquiries about where Nick could live and receive the care he required in Ottawa. At first, no one had answers or even encouragement. My first cold call to a local social service agency did not go well. When I explained that we were a returning diplomatic family that could not support Nick without twenty-four-hour nursing care, I was told that we would have no help whatsoever upon our return home. Apparently, our only option was to languish on waiting lists. The care funding we had won in our four-year appeal process was no longer valid because it had been mandated by the Ministry of Children and Youth Services and Nicholas was now an adult. We needed to invent a care solution from scratch, and we needed to do it quickly. We had just over four months to create a long-term support plan for Nick, ideally one that would last his lifetime. In the end, we managed to do it because a number of factors aligned to put our family in the right place at the right time.

Champions across sectors who knew Nicholas' needs demonstrated vision, flexibility and leadership, and for that we will always be grateful. In a way, we were lucky that our family had already endured a lengthy and painful appeals procedure. We also benefitted from the fact that the UK government assessed Nicholas' needs as being primarily health related (as opposed to social). Individuals with a primary diagnosis of developmental or cognitive disability are locked into sole funding by the social services ministry in both Ontario and the UK, but Nick's complex health concerns had always made him a hot potato — he was tossed between health and social care, leaving him and the rest of our family without help while the bureaucrats wrangled. It was clear to us that in both Canada and the UK, the health ministries were more reliable funding sources for Nick's complex nursing needs. Furthermore, although it was clear to everyone that a primary diagnosis of developmental disability had never been part of Nick's profile, he fell into a large crack between the funding criteria of these two ministries. Nicholas' health care needs had actually increased over the five years we lived in London, and he now had several new diagnoses to add to his already lengthy medical
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Our plan was to approach Ontario health authorities first. Nicholas was known almost on a first-name basis by medical and social support staff working in Ottawa children's services. But the adult and children's bureaucracies are entirely separate. Local service providers on the adult side had never heard of Nicholas Wright. Families here say that when their child with disabilities turns eighteen, it's like they have fallen off a cliff. To make matters worse, a returning diplomatic family with a son like Nick was a complete anomaly to the system. At first, it was difficult for us to explain to front-line Ottawa social service workers that during our years of government service abroad, we had never stopped being tax-paying residents of Ontario. The reaction we received to our initial enquiries about what services might be available to support Nicholas upon our return ranged from chilly to mystified. They assumed we were newcomers to the province and, therefore, our place was at the bottom of waiting lists. I wondered if they believed we were even Canadian.

At the time of our move, Nicholas was a twenty-three-year-old man under adult services — someone everyone agreed required twenty-four-hour nursing care. We knew that Nick's needs could not be met in our family home with a patchwork of helpers — the maximum allowable levels of home nursing would barely make a dent in his daily regime. Jim and I simply did not have the youth or physical strength to take up the slack necessary to keep our son safe.

It was clear that we had to find a housing and care solution for Nick before we returned to Canada. Nick could not move into our family home, even temporarily — if he did, we would all end up in the same vortex of pain, desperate fatigue and frantic hopelessness that we experienced in 2004. Luckily, the provincial government recognized Nick as a candidate for health services
and
social services. A couple of other highly complex adults living in Ontario had secured funding from both the Ministry of Health and Long-Term Care and the Ministry of Community and Social Services, so these precedents made our path a little easier. When our only local long-term care hospital turned Nick down due to his need for awake bedside night nursing, the door opened for a creative community solution. With a funding agreement in place, the search began for a local partner, one that could provide a home with qualified staff to care for Nick. Gina St. Amour, CEO of the Ottawa Rotary Home and champion of families supporting a son or daughter with disabilities, was my first port of call. The Rotary Home had just opened the doors of a new respite facility with a wing for children and another for adults with disabilities. The children's wing had received provincial funding for its operations but the adult side sat vacant, with only enough charitable funds to run an occasional overnight respite program. When I explained to Gina that we had secured health and social services funding for Nick's care, but had yet to locate a housing partner, her eyes lit up. “We would love to offer Nick a new home,” she said, smiling.

After tearful goodbyes to our High Commission extended family, and with housing secured for Nicholas, we finally made our move back to Canada. Nicholas was wan but full of smiles. The first few weeks here were fraught with annoyances. We were shocked when we found out that the pharmacy could not fill Nick's complicated prescription for his spinal cord pain pump. Although the Ontario Disability Support Program provides funding for most medicines, we were told that the pain pump medication, along with some other very expensive seizure medicines, was not covered without an appeal. Nick's doctors had to demonstrate that there were no alternatives to these time-tested remedies (which in time they were able to do). Nicholas' medications are now funded and his future is secure in that regard, at least for the time being.

The challenges of securing housing and care for Nick were nothing compared to learning to live without our young man in the next room. Jim and I worried constantly. A couple of months into our new life back in Canada, I posted this entry on my blog:

Last night I lay awake from 2–5 a.m. again. My dreams were of giant snakes in the lake at our beloved cottage. Why do I feel surrounded by lurking threats? I had no idea how my boy living apart from us would penetrate my days and nights with worry. I know that everything we did was right for him and for us, but at a cellular level, my heart and soul are objecting. The problem is that I don't know if Nick is safe because I can't check on him in the next room.

Now, more than two years later, I do sleep through the night. We visit, Skype or phone Nicholas nearly every day. Jim and I take a month away from home in February to escape the cold, and we don't fret or long to hold our young man. Sometimes, Nick is too busy to chat or visit with us. He has a rich life, full of work, amusements and friendships.

In some ways, Nick is happier and busier here than he was in England, but it wasn't always so. With the promise of a ticket package to see his beloved Ottawa Senators play on home ice, Nick was initially excited about coming home and moving into “his own place.” But the novelty soon wore off and he became somber and reflective. Eventually, Nicholas blurted out that he wanted to move back home. He tearfully admitted that living at the Rotary Home, away from us, was much tougher than he expected.

Everyone rallied to support our young man while he was feeling down, and Nicholas experienced a real turning point during our first Christmas back in Canada. Perhaps he had initially imagined that we would celebrate without him, but being firmly in the bosom of our family over the holidays afforded Nicholas a new level of confidence and freedom from worry of abandonment.

He now finds meaning and purpose by writing his hockey blog (http://www.thehockeyambassador.blogspot.ca), which has received well over seven thousand hits. He is also active on Twitter and Facebook. But Nick's favour­ite activity is managing an online fantasy hockey pool involving all the interested members of our extended family, along with a couple of close friends. Nick would like to work, so recently, he created a
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and nervously delivered it to the manager of his local community ice hockey arena, hoping to be hired for a part-time volunteer job. He is learning that perseverance is a requirement of securing any employment, even if it's voluntary. This particular dream is still a work in progress, but he's determined to succeed.

Nick's paid caregivers are also his friends, and they often hang out with him during their time off, especially if something special is planned. The fiancé of Nick's nursing manager visits biweekly to play PlayStation as a volunteer “gaming buddy.” All of these activities create a rich life for Nicholas — one that he enjoys and values.

Jim has more time now to spend with Nicholas, as do my two brothers-in-law, Rob and Jerry. All three are recently retired and have spending time with Nick inked in on their “must do for fun” list. As for mobility, Jim and I, as well as Nick's residence, purchased wheelchair vans, so transportation to sports events or the movies is not a problem.

Nick's health has been surprisingly solid since we arrived back in Canada. His seizures have plagued him from time to time, but we currently have those more or less under control. His pain is well managed by his spinal cord pain pump, lots of time lying down in bed and oral morphine. But there are always a few hours in the afternoon when Nick can get up for a trip to the golf course, the mall or the hockey arena.

Almost two years to the day after we arrived in Canada from London, our family celebrated Nicholas' twenty-fifth birthday. It was a very special occasion for everyone who loves Nick. I wrote this on my blog:

I don't know how many times we've nearly lost our Nicholas. Doctors told us in 2005 that he might only have two months to live — an in-patient examination of Nick's sleep patterns that year revealed a terrible increase in obstructive and central sleep apnea, something that is untreatable for Nicholas because of his combination of disabilities. The palliative care team welcomed us and we tried to keep Nick pain-free and happy as we worried every day and night.

On our return from London, our GP told Jim candidly that when we left Ottawa in 2006, he never expected to see Nick again. He marvels at Nick's strength of character and at the power of love in our family.

Last week our son turned twenty-five years old and we celebrated at our local sports bar with the family (minus Natalie, who is far away at graduate school) and a small group of best friends. Near our table, a ticker-tape display of sport betting odds rolled over the big screen and I thought about how Nick has beaten his own odds — he surprised everyone with his hunger for living.

So, Are We Happy?

Recently, I decided to check in with my family to see how well we had all managed to cope with the changes we experienced between 2011 and 2014. I used the Happiness Index described in chapter 16. I found my own scores were nearly identical to those in 2009. In other words, I am very happy, but I did show a slight dip in the areas of beauty/creativity and friendship. London is unparalleled for sheer aesthetic stimulation, and I do miss my dear London “sisterhood.” A slight shortfall in my scores relating to family relationships and mobility reflect new responsibilities for my mother. My mom is ninety-two and quite frail now, especially since surviving three near fatal infections over the past year. She's still feisty, but there's less bite to her bark these days. My sister Karen and I tag team Mum's care, but we both worry we aren't doing enough.

Jim's scores revealed gains in the areas of health and family relationships. He is fit, relaxed and has relished spending time with our family. For the first time in many years, Jim feels that he has control over how he spends his time and makes his life choices.

Natalie's scores are high; she is tired, but happy. We were thrilled when Nat was awarded one of eight full scholarships to study American material culture at the Winterthur Museum/University of Delaware. She is immersed in her passion — discerning cultural meanings in objects, especially textiles.

I was most interested in knowing how Nicholas felt about living independently. I was surprised to find that almost all of his scores revealed higher levels of happiness than those from our London days. Most dramatic were the increased scores in the areas of meaningful work and family relationships. I asked Nick the questions I had been longing to ask since we moved back to Canada: “Are you happy living here at Rotary Home? Do Dad and I see you often enough or do we come too much? Do you feel safe?” Nick's answers were interesting. He said that living at Rotary was okay, but he wished that he could live in his own apartment or back at home with us. At the same time, though, he sighed; he said that he felt very safe and he understood that he would not be secure in his own place or with us. Nick said that he wished Jim and I would visit more often. I laughed and said, “Well,
that's
not happening! We're already here all the time!” We both chuckled, but I knew that I couldn't let this opportunity pass to nudge our lad a little bit further towards a confident interdependent relationship with us. Nick reported that he knew we loved him and that we would drop everything to come in a minute if he were ill or in a crisis.