Intro

A little about me….

Hi there, I'm Freya. I'm divorced with shared custody, mom of two busy boys, ages 15 and 19.  My 15-year-old is a rambunctious kid, with a great sense of humour, sprinkled with a large dose of smart-ass’ism and an inquisitive mind.  His 19-year-old brother is quite the character himself, big-hearted, a lover of music and at times, the strong silent type.

What’s unique about my kids is that where my 15-year-old is “typical”, his brother is understood by society as “special needs”.  Whereas my 15-year-old is genetically deemed as normal and is physically healthy, his brother got an extra copy of the 21st chromosome and was born with Trisomy 21, most commonly known as Down syndrome.  Added to that was the serious health issue of chronic kidney disease.

Being a mom is a life-altering experience.  You get stretched beyond limits you didn’t even know existed.  You learn how to function – somewhat – with minimal sleep. You love your children, yet they have their moments when they drive you insane, and patience takes on a whole new meaning.  You can be exasperated by their behavior one minute, then the next minute be totally fine because you got a sweet smile and an “I love you”.

As a parent (or caregiver), you’ve likely gone through the highs and lows that come with parenting a child. That’s the joy of sharing related experiences – we ‘get’ what another parent is saying, because we’ve gone through it.

Having said all of that, there are some experiences that are not entirely relatable, not really.  Whether that’s because of something our child is going through, or how we choose to handle it while they do, there are some experiences which leave us feeling scared, exhausted and worst of all, isolated.

‘Isolated’ is a word I hear from parents and caregivers, all too often. Even when that word isn’t used specifically, I can tell from how the parent is talking, what they are saying, their facial expressions and how they hold their body, just how isolated they are feeling in their experience with their child.

Some are physically isolated, living in remote areas with minimal community or family support.  Some choose to leave their communities, moving to a major city center so they could be closer to a children’s hospital. Some literally gave up their homes and jobs, experiencing severe financial hardship, because the treatment their child was undergoing was going to take a year or more and they needed to be with their child.

How could someone going through all of this not feel isolated?

Those moments of isolation have come in many different forms for me:  times when I felt like I’ve been trapped under an umbrella of darkness so black I couldn’t see light, no matter how hard I tried; times when I’ve screamed in rage, crying, unable to cope with the bad news; times when I’ve felt like my insides were nothing more than a void, a black hole pulling me inwards, while I struggled to hold on, not get sucked in, my nails digging into and scraping along the floor.

I’ve chosen to share very little with my loved ones over the years.  It’s not that I never shared, of course I’ve had some tear-filled conversations.  But often when I did share, it was after waiting a long time before talking about it, or downplaying how I felt altogether.  Because when the terrible moments passed – and they always have, granted some taking much longer than others – I would berate myself for my behavior, tell myself that I was over-reacting.  That I needed to grow up and face it like a woman.  To be strong.  That there was no time for this kind of self-indulgence, my children needed me.

Silence is a form of isolation too.  In my case, a self-imposed form.  How many self-help books, TED talks, TV shows and therapists are out there telling us the importance of being able to talk about what we’re feeling, what we’re going through and that it will help doing so?

So why don’t we?

This is one of the many questions and ideas that I want to explore, think about, talk about and share.  I’m tired of being silent.  I’m tired of minimizing my feelings, or denying them, of not giving myself the space I need to even understand them.  I want to discover my voice.  Because I’m learning there are people out there who will understand, who can relate and that bridges can be built to connect us. 

What a beautiful thought.