During Joseph’s first surgeries as a baby we got to know other couples in the intensive and critical care units whose children had long-term cardiac problems or cancer. Over time, most of those marriages broke up.

Usually the mom would be at the hospital making life-altering decisions about the child while the dad was at home trying to hold the fort down, care for the other kids and pay the bills. They often had no appreciation for what the other was going through and there was a lot of unspoken guilt and resentment.

When we saw other relationships break under this stress, we made a pact that whenever we could we would be together at the hospital and make clinical decisions about Joseph together.

It hasn’t been easy, but these are strategies we’ve used to cope with long hospital stays and make it possible for both of us — and our other children — to be at the hospital or close by.

› Ask family and friends for help. When you have a child with a life-threatening illness, you can’t do it alone. People want to help and for the sake of your marriage, you have to let go of any pride and ask for help. Friends and relatives might take care of your other kids at home, drive grandma to the hospital, or visit with your sick child so that you and your partner can take a much-needed break.

› Seek financial assistance. Your social worker can help you access sources and fill out forms. In Ontario, we use Assistance for Children with Severe Disabilities to help cover the costs of accommodation, travel and food. We stay in subsidized family accommodations at the hospital or at nearby Ronald McDonald Houses. We are lucky that our community has also held several fundraisers to help with the costs of Joseph’s hospitalizations.

› Put family before careers. When Joseph has a serious surgery planned, Neil’s doctor puts him on stress leave so that he can receive 55 per cent of his pay for 16 weeks. Neil has lost jobs in the past because employers find it hard to accommodate time away. We know it’s not the end of the world because jobs come and go, but family is our long-term responsibility.

› Try to be together to hear important information from specialists. It’s challenging if one parent is always put in the role of conveying distressing or complicated information to the other.

› Involve your other children as much as possible. During a recent stay at Bloorview, four of our other five children stayed with us. They need the stability of being with both parents and we don’t want Joseph singled out from the family because of his illness. Our other children need to understand what Joseph is going through and can be a great source of distraction and motivation.

› Develop a CarePages website to stay connected to family and friends. Every night we write posts on Joseph’s progress.

› Draw on your faith or belief system. We believe that whatever happens, we can deal with it, and there’s no point getting upset over what we can’t control. We try to focus on how we can change a situation so we can deal with it better, or how we can change ourselves to better adapt.

› Recognize that when you return home, it’s a big adjustment! While in hospital, you have one focus: to help your child survive. You forget to eat, you don’t sleep, and you forget what it’s like to be married. During our first week home we try to have time alone as a family to regenerate. In addition to your child, you and your spouse have wounds that need special care and attention. It’s important to remember the small things — like holding hands, making a special dinner and communicating how you feel.