Mama Renew

This month’s Mama Renew profile features Deborah Purcell sharing her unique perspective on self-care as the mother of three children,  one of whom has a rare condition called Hunter Syndrome (MPS II).  On May 8th, they will host the 3rd annual “Tacos for Trey” fundraiser in North Vancouver, BC – a fun filled day with live entertainment, magicians, balloon twisters, face painting, tacos for all, margaritas for adults and a silent auction that will knock your socks off.

About Deborah

I don’t work outside the home. My partner, Ryan, is in the film industry, so he works long hours. I really feel that with him being gone so much, our kids need me, or other family, around. Three words that capture my way of being in this world? Love. Laughter. Believe. Maybe strength too!

Motherhood & Identity

I think my life would have been completely different if Trey hadn’t been diagnosed, but at this point, I cannot even imagine it.  I am at home because I want to spend as much time with my kids as I can. I also know, now, that with life there are no guarantees. Kids get sick. Kids die. Trey is the one in our family right now who has a rare disease, but I don’t for a moment think that it can’t happen to Sadie or Avery or Ryan or myself.

I am grateful to be a mom. I am grateful to have my kids in my life. I am grateful to be alive.

We also home school, or more accurately, life learn. Now that I’ve been forced to face the mortality of our kids, I’m even more grateful for this life path we’ve chosen. I can’t imagine missing those ‘ah ha’ moments of our kids. I love hanging out with my kids – they are so so much fun.

Making Space for Self-Care

Now that I no longer have infants, I do yoga, dance, and volleyball outside the house.  At a Neufeld conference a year ago, I had a new introduction to self care which really resonated with me. Usually our ideas of self-care are something you do, child-free, to care for yourself. But what if this form of self-care isn’t possible? Self care can be as simple as taking deep breaths while you are sitting with a screaming child. Having a cup of tea while you read your child a book. Having a glass of wine at night!

I really like this idea of self-care because it doesn’t make having kids and self-care mutually exclusive. I do go out to dance classes and yoga on my own, but when I can’t or don’t, I crank the music loud at home and do a dance class. They practice yoga with me and most recently, Trey got a unicycle for his birthday, which got me thinking it might be fun to get one too. We could learn together!!

What do you still need to work on?

Everything. Being calm, advocating for Trey, being a mum, partner, daughter, sister, and woman all at the same time, balance.

So many things. Being a parent sure humbled me.

Anything else you’d like to share?

Ask. Before I had a child with differences, I would see kids with differences, and wonder. But, I never asked. It felt awkward.  Well, at least on my part, I want you to ask. It’s uncomfortable. Because we know people wonder. Asking gets it out in the open, helps people understand, and connects people. I won’t be embarrassed. Neither will Trey. Having Hunter Syndrome is a difference, not a deficit. So just like you’re able to talk about the things that make you proud about your child, we’re proud of Trey’s Hunter Syndrome. It’s made him who he is. And he is wonderful. And we love him. So ask!

You can learn more about their family journey on their website: www.treypurcell.com.  We encourage you go invite a friend and go to the upcoming Tacos for Trey fundraiser - details below.  Thank you to Deborah for sharing her story – many words of wisdom about redefining self-care and making family a priority.  If you cannot attend the fundraiser, but would like to support their goal to find a cure for Hunter Syndrome, donations are gratefully accepted online at www.treypurcell.com.