Raising a child who is living with a chronic illness or lifelong disability is tough; there is no other way to put it.
There are certainly moments of sheer happiness parenting superheroes every day, but a lot of the time, there is sadness and worry. Financial burdens, caregiver burnout plague families, struggles to be in too many places at once. Their children often spend hours upon hours in doctor appointments or therapy sessions or days, even weeks at a time as hospital in-patients. It is difficult to plan outings or events because of so many factors. Quality time and fun are not at the top of the to-do list when you have a sick child in your family. All of these things can be so hard on the children, their parents and their siblings. I speak from the experience of someone who walks this path, raising Maclain. We have been through the wringer so often, and it takes a toll on our family. It never gets easier, and often we walk around waiting for the other shoe to drop.
The importance of organizations like Starlight Children's Foundation to families
When people ask about how we do it, and what supports are there for us in the way of funding and respite, I often find myself talking about the charities and community organizations that have helped us out over the years. Sadly there are very few government supports, so families like mine rely heavily on other organizations to help fill the gaps. I can honestly say that they are the reason we have had opportunities to participate in outings and events that give our family a break and give our family some fun.
One such organization is Starlight Children's Foundation Canada. For over 30 years, Starlight Canada has been spreading joy to sick kids across the country through a unique blend of the hospital to home programs designed for the whole family. Maclain became a Starlight child a few years ago after we had heard about their amazing work from many other families. The impact of their programs on our family has been immense. They bring families together to help make up for some lost time by creating fun experiences and events, giving families the chance to make new memories that will last a lifetime. In our short time being a part of this fantastic initiative, our family has been to Great Wolf Lodge, sporting events, accessible trick or treating, movie nights, and so much more. It has provided us the time to be together, leave our worries behind, be a regular family. Starlight accommodates everything we need, so there is no hassle when we get to the event, that usual anxiety of what can go wrong doesn't exist with their adventures. When I see an email come through from Starlight, and their fantastic events coordinators, my day instantly brightens. Even if it isn't an activity that Maclain can attend or participate in, the fact that they are there and available reminds me that we are not alone in this caregiving journey. Some people and organizations exist solely to make life better for kids like Maclain and families like ours. Thank you.
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