Empty room.

My boy’s room. Up until recently I would not step foot into Parker’s room if he wasn’t home. (Or at least not go in unless absolutely necessary) it was easier to deal with my sadness at him not living at home full time. It was easier to shut the door on my feelings of inadequacy and shame over our decision. It’s something I’m working on. I’m learning to forgive myself for the decision we made and give myself permission to live guilt free and to live my life fully. It’s not an overnight process. Its not a steady straight path. It’s been nearly 4 years, but I’m reminded of the piece I read about grief back when we first made this decision. It still speaks to me.

I’m never sure when those feelings are going to surge back up and overwhelm me. But I know, if I keep the door shut and don’t look at his empty bed, I’m able to live in denial a little longer. In my mind I know my kiddo is happy and loved by so many. I know we made the right decision, for so many reasons. But every now and then my heart goes rogue and forgets all that.

But tonight I went into his room , tidied up the mess he left while he was home this weekend, did some redecorating and even laid on his bed for a couple minutes. No tears, no sadness and no guilt. Today I’m in between the waves.


On Music. 

With Gord’s passing today it’s made me think about why we all have such a profound reaction when we lose a musician. We don’t know them personally. Most have never met the musicians we have grown to love. But when they go, it’s like you’ve lost a friend.
I think it’s because music weaves itself into so many facets of our life, from your first dance as husband and wife, the song that got you through that first break up, or the music that was playing on the stereo during your first kiss. So many of our memories come with music attached. I myself clearly remember what I was doing the first time I heard The Tragically Hip (A great make out session with an awesome soundtrack!) So many lyrics have touched us in someway, either to make us laugh, or cry or even heal. Music can invoke such a visceral response, from raising goosebumps on your skin, or bringing tears to your eyes or even giving you that all empowering sense of invincibility. It can be your battle cry or your victory anthem, or the theme song for your life.

There are lyrics that convey so exactly how we may be feeling that you feel a connection with the person who penned them. The knowing that they’ve been there gives you a certain sense of peace and kinship.

But the one beautiful thing about music is that unlike the ones who gift us with it, it is eternal. It will live for future generations to fall in love with and be inspired by. It will be shared between friends who know just what song will make it all better. And it will continue to make the world a better place.

Guilt is a b*#!h. 

We recently decided to take Rachel and Jackson on a trip. Just the two of them. One last trip before Rachel leaves for London in August (yikes!) but knew that bringing Parker along would keep us from doing many of the things on his brother and sisters  wish lists. 

Saying our lives have been kind of dictated by autism feels like a disservice to Parker. We have had a lot of amazing adventures together through the years. We don’t begrudge anything we’ve ever had to do for him and with him. But it would definitely be fair to say it has limited our opportunities to do certain things with Rachel and Jackson. It was a very difficult decision to plan this trip, knowing that a very important fifth of our family would not be coming along. There’s also a lot of shame in admitting our decision to do so. But at the end of the day we know our older kids are growing up super fast, and we won’t have the same chance to do this kind of stuff with them forever, before they move out and start families of their own. And Parker is going to be our side kick on many, many future adventures for as long as he wants to hang out with his uncool folks. 

So, while we are definitely leaving part of our hearts home when we leave today, we know Rachel and Jackson will enjoy having our undivided attention. 
P.S Parenting is hard AF. 

Hurricane Autism. 

We are in the weeds. Smack dab in the throes of hurricane autism. We are seeing behaviours from Parker we haven’t seen in a very long time. His eating has regressed and he’s losing weight. It’s hell on earth trying to get someone to eat who has zero interest in the food in front of them.  His OCD tendencies are so out of control that most days he’s got the most haunted, tormented look on his face. He’s sleeping excessively yet always looks tired. His face is drawn, dark circles under his eyes, chapped lips and skinny arms. 

  I can’t help but picture him trapped inside a glass box, screaming and crying and trying to make us understand. And it just kills me. It’s like a gut punch right to your core when you cannot help your child. Honestly it’s the most impotent feeling as a mother that you can have. 

It’s these moments, when he’s pulling out clumps of my hair that I worry I have failed him in some way. That I missed that one magical therapy that would have helped him more. That one thing that would have given him his voice. These moments when he’s running away from me that I worry that when he’s 20 years old I won’t be able to take him places on my own. It’s moments like these that have left scars on my heart that never fade. 

I know this is temporary, another bump in the road.  We will play detective with patience and love until we figure out how to get our happy boy back to us. Until then, we just hang on to each other and weather the storm. 


Eye of the storm?

Things have been pretty quiet around here lately. Which is good. Very good. We of course were concerned we would see some recurrence of undesired behaviors with Parker’s sudden move to a new resource in September. Instead what we got was…nothing. None of the aggression we were expecting, none of the sadness in missing his previous workers. He has been amazing and honestly I could not be prouder of him.

It’s been a bit of work for us, “training” new staff on all of Parker’s things that make him the awesome person he is. But in hind sight it most likely has been the best thing that could have happened. While so many of the staff at his other placement were amazing (you know who you are) the owner of the company that provided the care left A LOT to be desired. Seriously I could write a book . And while Parker was safe and looked after (again thanks to his amazing people there) there were some that wasn’t the case for and thankfully this particular company will no longer be providing care for children. Definitely a silver lining.

Parker’s seizures however,  have made a reappearance over the last 6 months. I could definitely do without those. But I am hoping once he has finished up with puberty those will settle down again. Their reappearance also means another trip to Children’s Hospital, which is the stuff hangovers are made of.

So for now, no news is good news. We are looking forward to the year ahead of us, and enjoying our times together as a family. Many things to look forward to this year.


New villagers

It’s very difficult when you get a new bunch of people in your childs village. They all come not knowing your child, but wanting to do all the things you have already tried in the lifetime you’ve had with your kiddo. They want to try all the great ideas they have, forgetting that things need to be gradual. You can’t pile too much on all at once.  It’s even made more difficult when your child cannot speak and tell you if he’s sad or mad or frustrated.  

I am not at all adverse to new ideas and input from people to make Parker’s life easier. I know my limitations and I know I’m not a professional in the field of autism and autism therapies etc. But the one thing I am an expert on is loving my boy and wanting the best for him. I often feel I spend half my time proving to these new people that I do know what I’m doing. 

I recently had a new person suggest taking Parker to a dietician; something I did probably 5 years ago. She didn’t really want to hear that it wasn’t a good idea because not only do I already know what he needs to eat for a balanced diet, but just because a dietician tells us an ideal meal guide for him it doesn’t mean he’s going to eat it! I had to multiple times tell her that it’s really a waste of time; not because I don’t want Parker to eat well, but because you can’t physically make him eat what he doesn’t want to eat. It’s maddening when people assume that because Parker is in care it’s because I’m done with caring for him. Having him in care means I’m not only looking out for his needs but I’m also having to make sure that every single person has his best interests at heart, that they’re treating him with respect and dignity and that he’s safe from harm. It’s a 24/7 job and then some.  

It absolutely takes a boat load of trust on our part when we are faced with new people. It’s hard not to scrutinize every action and interaction. I have learned though that my first impression of someone is generally pretty spot on and I’ve also learned to listen to Parker’s cues. He’s got a fantastic ability to read people very quickly. So if I notice he’s being standoffish or even aggressive toward someone new, I definitely take note. 

So it’s definitely a balancing act that some days I’m great at and some days I just hate. But I know these new villagers are still learning who my boy is and how he’s going to interact with them and I know that the only thing that will make it’s easier for him and everyone involved is time. And patience. 



I arrived “home” on the the 28th, arriving under a blanket of fog that was swiftly moving in, as if it were a welcome mat being rolled out to greet me. It’s inexplicable, the feeling I get when I see the Welcome to Hermitage sign. My warring emotions of knowing so many loved ones have passed and there will be no dropping in for tea with them. The feeling of elation, and simple quiet ease, as if shedding a heavy weight I didn’t know I had been carrying. The anxiousness of wanting- no needing to get to the ocean, to smell the air and the beautiful perfume of the sea. 

Everywhere I look in this small town, there are memories that are always attached to someone I love. I can’t recall a memory without thinking fondly of the people I made the memories with. 

I’ve walked all over town this visit, taking photos of the beauty that is Hermitage, trying to capture its essence to share with everyone I know on the west coast. But a picture can’t capture the feeling. It can’t capture the warmth of the people, the undying love of family or the hard work of the people that keep this town alive. It can’t capture the simple quietness, when all you hear are your thoughts and the waves and the seagulls. 

My time here in Hermitage is quickly coming to an end and I can’t help but feel a sense of panic. A fear of losing this warm blanket of feeling I’ve had since my arrival.  I leave with the dream of having a home here one day.  A place to invite friends to visit so they can experience my amazing hometown. A small oasis I can escape to as often as possible. A place to recharge my soul.



Newfoundland owns a little piece of my soul,

She’s claimed since the day of my birth.

Just a little piece of my soul

But there’s no way to measure its worth.

Newfoundland’s traditions are strong.

They reach right down to the bone.

But when she took a piece of my soul

She left a small part of her own.

Now that piece of my soul keeps calling me.

Calling by night and by day,

Saying let’s become one again.

Come home, come home…to stay.

Lloyd Short