Planning family holidays has always been a challenge with a medically fragile child. Initially we would take Matthew with us, but as he grew older and become more complex that proved difficult. Holidays with Matthew, while still possible, usually mean that his health and care needs dictate our entire holiday and that I return home exhausted and in need of a holiday.
But for a while we did it. Matthew has camped Algonquin and we would hike his feeding pump out to a ranger station every night to have it re-charged. Finally we reached the point where we accepted that Matthew would need to be admitted to a respite facility for many family holidays. But even that can be challenging. First you need to book respite knowing many other families also want respite during peak times like school holidays and summer. There are usually strict time limits on respite and guidelines around drop-off and pick-up times. It doesn’t matter that your family holiday is seven days, you can only have five days of respite. Or, it doesn’t matter that your plane gets in at 5pm, discharge time is 2pm. I guess you need to fly home a day early.
And then even when you have respite booked it doesn’t always mean it happens. Your kid can get sick. Or kids at the respite facility get sick and respite is shut down. One year our March break plans were thrown into total disarray because public health shut down our respite facility following a gastroenteritis outbreak.
These days Matthew is generally admitted to a respite facility if we want to get away. But now that we have older kids we are finding we have a whole new set of challenges associated with family holidays. Our eldest is in university while our youngest is in high school. They have totally different holiday schedules. Our eldest also now works up north as a camp counsellor for most of the summer. Christmas is the only real stretch of time we could arrange a family holiday but that presents new problems. First respite admissions tend to be difficult to obtain because it is a peak holiday time, and second respite staff themselves reasonably want some time off to spend time with their families. Throw into the mix that my kids prefer the classic Christmas at home with turkey, a tree, and family means we don’t travel at that time.
Enter the mini-hoiday. Recently I told my husband that I wanted to do something as a family. It was understood Matthew would be in respite – and, yes, that fracturing of the family bugs me but is a whole separate post. We knew we could only come up with a long weekend before our eldest needed to head north so we spent some time brainstorming about what we could do. The location had to be within a day’s drive. Our youngest is a theatre buff and wanted theatre. Perhaps New York? Our eldest is a sports guy and wanted major league sports. New York could work, but how about Chicago? Or Washington – they’re in the playoffs after all.
Guess where we’re going!!! We’re heading a whole one hour down the road to Toronto. But it works. Everyone gets what he or she wants. I get a long weekend with my kids and husband before they start dispersing for the summer. We’ve got tickets to Kinky Boots for my youngest, and seats at the Jay’s game for my eldest. If the Raptors go to game seven we’ll likely go watch the game on the big screen outside the Air Canada Centre. We’ll ride to the top of the CN Tower where my eldest and I will cower in a corner since we’re afraid of heights while my youngest tap dances on the glass floor. We’ll visit the aquarium and catch a movie. We’ll eat out and sleep in. I think we’ll have a blast.
As a family we have had to come up with some happy medium of including Matthew wherever we can, but also acknowledging that sometimes we need to be able to enjoy ourselves without the demands of his care. We have also had to work within the fairly restrictive bounds of respite and life with a medically fragile kid. I think we’ve done a decent job getting creative and making sure all of our kids have happy family memories.
I can’t wait for this weekend!