It has been one month since our last update. I have no new medical information to share regarding Hillary’s condition. She continues with 1-2 sick days per week but is such a happy and joyful child. Always singing.

I am writing with some news that may impact Hillary’s recovery plan. 

Our family has had to make some difficult decisions since Alyssa will be returning to in-person school in September after four long years at home. She wants to attend Grade 8 at St. Mark’s High School, where her elementary friends are. 

We all want to see Alyssa flourish  — Hillary included. We thought she’d do one more year at St. Josephine Virtual School and jump in in Grade 9 but, it’s time now. She is so very happy and competent and beautiful and ready and we want to avoid any signs of depression or anxiety that comes with this isolated lifestyle. It’s clear now that COVID will not go away. Just ask my parents. 

We’ve taken a realistic look at what’s going to happen next. We’ve discussed it with others in similar medical situations. Steve and I talked it out until 4am and there is just no way around it and just no turning back. 

We’re selling our dream home. 

It’s only fitting. We’ve both lost our jobs, our family, and now our first house. Childhood illness takes no prisoners. It’s either this, or we split up and live in two separate homes. Or worse. 

Steven and I haven’t even told our parents. The sign came early today and this is all happening at lightning speed. I said I was ready (but I’m not). We need to move and keep 40K in credit for a bone marrow transplant…always. The market is bad right now. The interest rates just went up. We will continue to lose. We really don’t care. It will all mean nothing if she’s gone.

Hillary fell down a few stairs in a home viewing last week. She falls often and is not sturdy on her feet. Right before she fell, she asked me to make sure I carpet the stairs for her. It made me realize how very safe this home has been for her. And how that must all now change. 

School starts in less than 50 days. Our split-level home is simply too small to manage isolation protocols with viral illness inside the house – like COVID19. There is no upstairs or downstairs here. It’s all one open space. We can’t undertake home renovations while Hillary is here. We need to get somewhere (anywhere) where there are three levels including a dedicated floor for Alyssa as we stage our forced infection.

We have put in a few offers and they fell through and we are feverishly still trying to find something close enough to her school for her to take the school bus. We will likely need to drive her. 

I will have to find a way to care for and love my favourite person in the world, Alyssa, without harming Hillary. 

I did level impossible. 
Level unimaginable is coming.
It’s NOT one day at a time.
The future haunts me now.  

The only thing to do is the next thing. Like laying bricks. You pick one up, put it down and make sure it’s perfect, then pick up the next one. 

Please know that we are not broken over this. We still have each other. For the sake of the children, we are treating this a positive adventure. They are happy and well. We simply need to switch hotels. We understand that we are blessed to have a home at all. My heart literally aches to admit how secure we are amidst the poverty that plagues 80% of our Earth. But we have worked very hard to provide security for our children and we will continue to strive to do this. 

We have found a Realtor who understands our complex needs, and will continue to seek accommodations wherever possible. Moving contactless is going to be a challenge, though. It already has been. We can’t have open houses. We will likely take a few hits for this, and the pressure is hard to withstand, but it’s just more stick-handling. 

It’s all easier than losing Hillary. 

Home buyers sometimes provide a real estate “love letter” to sellers to help sway them into accepting an offer. The letter conveys emotions and typically explains what the buyer loves about the home and how they see themselves in it.

We haven’t found our new home yet, so this is my reverse love letter, with deep appreciation for ours as we prepare to leave it.

We moved here into our first home in 2007, the year we were married. We never thought we could afford to live in such a beautiful and coveted area such as historic Manotick, but everything just fell into place. We knew this house would be the perfect place to start a family, with the school bus stop right in the driveway.

We had beautiful children and grew with the seasons. They were the best years of our lives. Winter, spring, summer, fall – our home provided the most spectacular views of nature. The full moon shines through Hillary’s window and calls to her, just like it did that night at CHEO.

Hillary was never alone in this house. The split-ranch layout allowed us all to see and hear each other all day, no matter what level we were on. We were all right beside Hillary as she pushed through the immense challenges of her immunosuppressive therapy for two years. There was always someone right there beside her to hear her singing.

Hillary saw the world go by through the pane of glass in our living room. The floor-to-ceiling window let her see everything from chipmunks to shooting stars, people to airplanes, even on sick days. She felt safe behind it  — completely carefree. It’s the best layer of protection we could have imagined. That window might be the single most important contributor to Hillary’s mental health. What a gift. 

But the best gift of all is the paradise that is our backyard. 

We moved the Make-A-Wish camping trailer closer to the house this year for better WiFi and Hillary has never loved it more. She did the last month of virtual school in it. She is very appreciative and honors it with her company as much as possible. It’s just as magical as you could imagine sleeping in there at night in the pitch black — crickets, frogs, fireflies, and noises in the wooded forest all around. Her wish is fulfilled every summer and she is so deserving for the sacrifices she has made due to her health. We sincerely hope we can find somewhere with space for her trailer. I won’t be able to stand seeing it closed up and parked in the driveway.

The pool. We remortgaged the house in May and put in a brand new 24 foot resin salt-water pool with copper ionizer and natural gas heater. I built the deck and stairs. It was the hardest project I’ve undertaken, and I succeeded out of pure desperation to provide more wellness opportunities to my children. Derek at Poolarama went to every extreme to help me. We swam in it for 8 hours the first day, 6 hours the next, 5 hours the next, and then every other possible day since. The health benefits for Hillary are unbelievable. 

We’ve never been happier. 

I can’t believe we have to leave.

We credit this house to offering a place of wellness which contributed to Hillary’s recovery. We leave it with a great sense of pride and wish for it the best. Like the beloved Giving Tree, this house has given us everything we needed — but has nothing left to give. 

When you visit the bench at the end of our street on Edgewater Drive to watch the sun set on the Rideau River, please know that that bench represents how hard we fought as a family here. We dragged that water-logged wood out of the water — making sure we all contributed — and placed it on two braces and turned it into something good. Something divine. We dubbed it the McKibbin Bench and we hope it will be there for us to visit in the future. 

With Hillary. 

It doesn’t matter where we live. 

We have to do the right thing. 

The sun will still shine through our windows.

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