April 19, 2017
The journey of childhood illness is not easy, says Grace
“It’s not a sprint – it’s a marathon.”
That’s how Grace Caguioa Valentin describes the journey of having a seriously ill child. It’s a journey she shares with dozens of other families staying at Ronald McDonald House Charities (RMHC) Toronto. Since her son Patrick was born prematurely in September 2014, Grace’s family has spent 292 nights at the House while Patrick is treated for a life-threatening kidney disease.
“In the beginning, you’re like a deer in the headlights,” says Grace. “We weren’t sure if Patrick would survive and, as a parent, you go through a long period of shock and blame. Eventually you get sick of blaming yourself and you need that energy to cope.”
For the first eight months of his life, Patrick spent four to eight hours every day receiving protein infusions at The Hospital for Sick Children (SickKids). Walking back and forth to the hospital wasn’t what Grace and her husband, Pascal, had pictured when they envisioned having a baby.
“Living with a sick child, we quickly realized that most people just don’t understand what you’re going through,” says Grace. “One of the big pluses of living at RMHC Toronto is meeting people who are in similar situations. You make deep, wonderful connections with parents who’ve been around the block and have developed a great sense of humour.”
The Valentins left RMHC Toronto in May 2015, and the next two years were filled with ups and downs. Patrick ended up having both kidneys removed and now requires daily albumin infusions at SickKids. Though you wouldn’t know it to look at this smiley, energetic little boy, Patrick will need a kidney transplant. Midway through their “marathon,” RMHC Toronto is once again their home.
“I used to think that going through this would make you a better person but, really, it’s just hard,” says Grace. “People always say, ‘You’re such a strong person,’ but I’m just going through the motions, one day at a time. We manage because we have to.”
Difficult as life can be, managing is much easier with the support the Valentins find at RMHC Toronto.
“We need this place. The staff here are such loving people – you can really feel it. They’re always there to offer kind words and ask how they can help.”
And of course, there are the other families. Her fellow marathoners.
“The House creates a base for families to support families. It makes the journey a lot less lonely with other people in the same boat.”