Before William was born, we lost our daughter Hanna and were told that couples who experience the loss of a child often struggle to stay together. Then William was born and we were faced with the question –  “You have two options, we can make your boy comfortable and let him go or we can exhaust lifesaving options and fight for his life – what would you like to do?”  We chose to fight for William’s life.

These are two moments in time that we would not wish on anyone. But for us they are defining moments in our relationship. We often look back and talk about these times and agree that they brought us closer together. I remember, after the loss of our Hanna, not wanting to even be in a different room from Bear. Really, all we wanted to do was curl up in bed together and let the world pass by – we didn’t because our girls needed us.  So we got up every day and gave each other the strength to live. When we decided to fight for William’s life (making him comfortable and letting him go was not an option) we stood by one another despite our fear and we fought. Little did we know at the time that we would have to keep fighting for the rest of our lives.

Thinking back, these two moments felt like all we had at that time – which was sad, overwhelming, depressing and painful. These moments cast a shadow over everything that was beautiful and good in our life.

Slowly, we filled our sadness, overwhelm, depression and pain with new experiences, new opportunities, new dreams, new goals and new memories.

 

It was an every-day chore at first – a conscious effort to see the good in life and to pick each other and our girls and William every single day.

 

Eventually the clouds separated and we could see the light again.

Collectively, we hold each other accountable and support one another so we don’t fall victim to falling apart – individually or as a team.

It’s been 12 years since we lost Hanna and we’ve spent 11 years loving William. We have a very full life and although it may not be what we envisioned on our wedding day, our life is beautiful and we choose each other every single day.

So how do we make it work?

My husband and I both have busy schedules and our own lives that we manage individually and both are equally as important . We give and take on responsibilities and share parenting with admiration for how the other one does it. From my perspective we work to support our teammates and I’m in awe of mine. I think we both look up to one another with huge admiration and pride.

His career is important to him and I allow the time he needs to commit to the community he so deeply cares for. His long days, off hours phone calls, some travel and the emotional weight all play into how I run our world at home.

I manage all of our home life which revolves around William and the girls’ worlds. Everything from supplies, medical appointments, nurses and training, laundry, extra curriculars, and home stuff. And yes, I have a Google calendar that is colour coded and always up to date with nurse schedules, appointments, activities, travel dates, clients etc. We respect our roles and both are equally valued in our world. We know that without one the other would fall apart. We trust each other to handle what lands in our laps. And neither one of us shirk responsibilities. Things may come up that agitate us or throw us off our rhythm but we know that one quick phone call to hash out an issue sets us both right back on track.

We share meal planning and preparation because it’s important to both of us and often I have an exercise class or clients in the evening and he supports me having that part of my life. Our health, as we age, has become a big priority for both of us and we support one another on that journey and give each other space and time to focus on it.

When things get tough we lean on one another and we are grateful that we are with the person we’ve experienced the toughest times of our life with – we can get through anything together – challenge accepted!

We always go to bed together at night, we make sure we discuss the next day before it comes, we always let each other know where we are, we both sacrifice and we both prioritize our family. We check in before leaving for the day, show affection in front of our kids even if we know we will get eyes rolling and we say, “I love you” as often as we can – we both know how fleeting life can be and how quickly things can shake our world. We support each other’s dreams and goals and help one another chase them. Then we celebrate! Although we may not plan time together, we take advantage of the moments when the schedule clears. Sometimes the last-minute plans are the best laid plans.

When we bicker, we work through it and get on with it knowing that we both have the best of intentions. We listen and take constructive criticism and do better next time. We support each other’s decisions even if we wouldn’t have made the same decision – we have each other’s back.

We put in the work and that’s how we make it work.

 

There is no magical recipe but we never give up and we always try to come from a place of love and respect. We chose each other when we were 23 years old and through the last 20 years of growth, change, heartache, celebrations and finding ourselves, we keep choosing each other because we know we are worth it.

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.