HOME is a LOADED word

On a late summer evening just a couple of months ago, we touched down at Ottawa International Airport and were greeted by our extended family and a group of others from Nicholas' new care 'home'.

Above is a photo someone snapped that evening of Nick's new extended family! You can tell by their smiles that they are kind and fun - a great combination of qualities!

After much hugging and collection of multiple bags, we assembled our convoy of vehicles. I rode in the Ottawa Rotary Home wheelchair van with Nick and everyone followed to see our young man's new digs. We were all excited and nervous, but happy. Natalie had said her goodbyes to London, Jim was contemplating retirement from the foreign service, I had plans to write more and Nicholas was moving out of our home into his own. Our family was moving away from a home that was not really our home, although we tried our best to make it so. Jim's job as Canada's High Commissioner to the UK meant that we lived in the official residence. The house and its furnishings were beautiful, but we were just temporary tenants who shared the surroundings happily. The real landlords were all Canadians.

Every time our family has packed up to move, I have talked about the meaning of 'home' to the children. As moving day approached, they felt keenly the loss of friends, cottage traditions and familiarity. "Home is wherever we are", I would say, "we carry it inside of ourselves. All we need for home is to be together".

Now that Nicholas is living in his new home (which doesn't feel like home to him yet), we have to rethink our ideas about our home too. Natalie now considers her home to be Toronto - she has no romantic memories of her younger years in Ottawa. As a 'global nomad' kid, it's no wonder that she is majoring in transnational studies at Trinity College. "Where are you from?" has always been a complicated question for her.

So yesterday, I was visiting Nicholas and we were planning a visit 'home' this Saturday. Jim had suggested that we no longer call our house 'home' when we are talking to Nick. Rather, we should name it 'the old house', or 'Tillbury Avenue'. We are trying out new language for these tricky new circumstances - Nick's place is variously called 'your apartment', 'Rotary Home' or 'your place'. Yesterday, I slipped and referred to our planned destination this weekend as a visit 'home'. I corrected myself and we all had a chat about why I don't want to use that word now. We need a new language for this new life and we are being very, very careful with 'home'. Because HOME is a loaded word and we don't quite know what it means yet.

CHANGE

I won't lie.   So far, this move has not been easy.  The night before we left London, we all noticed that Nicholas had symptoms of a urinary tract infection.  It was too late to call in a doctor, so we just carried on with our travel plans.  After affectionate (and a little tearful) hugs goodbye with our extended family of staff at Grosvenor Square, Nicholas left in a black cab with Alvaro, bound for Paddington station where he would take the Heathrow Express and meet us at the airport - a train ride that would save him the effort of sitting in an uncomfortable van for an hour.  When we met Nick at the airport, it was obvious that he was ill.  Nicholas was feverish and nauseated at the airport and the flight was less eventful, but uncomfortable.  He managed some smiles when at the Ottawa end when the warmest group greeted us - family, friends and Rotary Home staff all gathered to give us a hand with the luggage and a collective hug.  Christine, our primary nurse, was concerned.  Nicholas by now had a very high heart rate and real temperature.  We decided to try simple hydration and then reassess.  Luckily, our PLAN A worked and Nicholas was much improved after a few hours of water via the tube.

Thanks to a house call by our wonderful GP, we now have a prescription for amoxicillin and Nick seems much more himself.  But today he's sneezing, so a cold may be on its way.  His nights have been much better from a seizure perspective since we arrived.  I believe that may be due to his brand new alternating air mattress.   Nicholas seems very comfortable in bed and we know that pain is a seizure trigger, so this new state of affairs is a very welcome change.  Hopefully, his virtually seizure-free nights will continue.

Sometimes life makes you wonder what planet is in your personal retrograde.  So many small things going wrong is mystifying.  We already have two nurses who are either ill or injured.  A glass of water was spilled on Nick's new laptop.  My laptop coincidentally failed and needed a new screen display.  The internet and the telephone at home do not work.  Nicholas got locked out of his hotmail account and I am locked out of Nick's case coordinating Tyze website - home to all his appointments and care notes.  Today on the highway, a stone hit my windshield and cracked it.  I could go on.

The big stuff is all good and we are happy to be near family, be in our home and know that Nicholas is safe and happy.  His cold will get better, the windshield will be repaired.  The staff will all be trained and Nicholas will have his long awaited chance to see the Ottawa Senators play live at Scotiabank Place.  We'll get there.