Saturday 9 July 2011


The time has come," the Walrus said,"To talk of many things".

After five wonderful years in London, we are going home. Our leaving date is on or about August 31st. For some months now, I have been in talks with the Ontario government about Nicholas' care and I think that we have come to a happy solution - we agreed that Nicholas will go to live at the Ottawa Rotary Home, a gorgeous, brand new respite facility for young adults with complex care needs. At some point in the future, another residential opportunity might present itself, but for now, we are happy that Nick doesn't have to live at a hospital.

There are hundreds of details to sort out. All of Nick's equipment here in London runs on 220 volt electricity rather than 110. The medical community in Canada operates differently than it does here - no more specialists for epilepsy, pain, palliative care or rheumatology. Nicholas will be managed by the same GP who managed his care before we arrived in the UK, a kind, intrepid and gifted diagnostician. I feel relieved and grateful with those arrangements.

My current to-do list relates to the flight and transportation to and from airports. Will Nicholas be able to sit on board the aircraft comfortably? How will we manage the medications to allow for a five hour time difference?

I am working on these tasks in a sensible way (I think) - one at a time. We are getting there.

I haven't begun yet, however, to confront the idea of Nicholas living outside our home. I haven't begun to imagine our old house in Ottawa without him. I have kept my head down and concentrated on the tasks at hand. Nicholas is going to the only place in our home city that can care for him safely. It takes a lot of people and high tech equipment to keep my young man alive, healthy and engaged. I know that now we cannot meet Nicholas' needs at home. It is physically impossible for Jim and me.

Nicholas is at the forefront of the first generation of highly complex and completely dependent young people who have survived against all odds far beyond their predicted lifespan. There is no policy, programme or service anywhere in the world that is ready for this demographic. Everyone is scrambling to figure out how to meet this unexpected and very great need.

How does Nicholas feel about his imminent move? He's excited now and he'll probably be a little nervous closer to our move. But he knows that I have bought a beer fridge for beside his bed and tickets for ten Ottawa Senators hockey games this season in the wheelchair section. He also knows that we live ten minutes away by car and that I will stay with him at Rotary Home until he tells me to go away and leave him alone.

So all fingers are crossed in our family for a smooth transition. There will be lessons learned, no doubt some of them hard in this move. Change is hard, but change is good. Wish us luck.


lesley said...

'I will stay with him at Rotary Home until he tells me to go away and leave him alone.'

That line made me smile. I'm still smiling. I have a suspicion things are going to go very well for you and your young man.

And yes, there is a huge wave of medically complex young people coming ashore and no one is ready.

I look forward to hearing how it is going.

Hiromi Stone said...

Oh Donna, you must have such mixed emotions. I wish you and Nicholas all the best in your transition.

Kathleen Jordan said...

We are so happy for you Donna and Nick. Chris is there this week and doesn't really want to come home at all EVER! I hope that makes you feel better because it sure allows me to relax and enjoy myself while he is away, knowing that he is safe and happy.
Maybe Chris and Nick can link up when Nick gets to Rotary! Chris can hardly wait for him to come home. AND I can hardly wait for you to return so we can enjoy our get-to-gethers and great conversations about all things!

June Tranmer said...

Dear Donna, So good to hear how organised everything is sounding. I am sure it will go very smoothly - my thoughts will be with you for the flight as it is arduous for everyone - if you keep taking the Emergency Essence it will help everyone!
sounds like Nick is going to be very well cared for once he gets there. Keep on breaking down the barriers and breaking new ground.

Darrell said...

Thank you for sharing the heroics of the Rotary Home. dz