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. 

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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. 
Tonja 

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. 

Tonja

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.

Tonja

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. 

Tonja. 

Hermitage

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.

Tonja 

PIECE OF 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

Missing

I have been finding myself missing things lately. Not in misplacing things, but missing moments that have come and gone . I’m missing my kids when their arms were still so chubby and small, their little arms straining to give me a hug. I miss the smell of my babies after their baths, so fresh and unlike anything that could be manufactured in a perfume factory. 

I even miss that moment of panic you could see in their eyes when you weren’t right there in front of them when they were looking for you. As if the world might stop turning until you crossed their gaze again. 

I miss story time- the soft sleepiness in the air as we learned life lessons from the Berenstein Bears. Blanket forts in the living room and picnics at the park. Their pure joy at seeing you after you had been at work all day. I miss dinners around the table, before everyone was so busy. I even miss nights when one of them was sick and they needed to crawl into bed with us, the snuggles being the only medicine needed. I miss being able to fix every one of their problems with a magic mama kiss. 

I miss the gapped toothed smiles, and the sun kissed noses with their sprinkling of freckles and the way their skin smelled after a day in the sun. And I miss the blissful ignorance of any of the hardships that were yet to come.  I miss every single moment of it. 

But I don’t miss it with a feeling of sadness or regret. I miss it with a feeling of wonder. I miss it with the feeling you get when you see magic for the first time. That sense of amazement and awe of what you are seeing right before your very eyes. I miss it with a yearning that’s almost palpable, for those simpler moments in life that we are just too busy just trying to “get through” to see them for the amazing gifts that they are. And I miss it with the knowledge that I’m so very lucky to have had every single one of those moments to now miss.
Memory… is the diary that we all carry about with us. ~Oscar Wilde
Tonja   

On being “selfish”


I am a firm believer in taking time for yourself. Whether it’s to read a book, go for a walk or even just wander the mall. As long as what I am doing is just for me and no one else. I love going to dinner by myself. I take a book, and people watch. Or I spend afternoons at the lake relaxing and floating in the water or drinking a coffee and reading or writing. I love being completely alone at times. I am my first and oldest friend. I don’t have to carry a conversation with myself, I don’t have to answer any questions. I don’t have to solve any problems or look at a calendar. I can just be. And not only do I not feel guilty doing any of these things, I feel like moments like these are so very necessary for my spiritual health and my mental health. I may be someone’s parent or wife, or friend, but before any of those things I was just me. I still have dreams and aspirations, I have desires and opportunities to grow and learn. I’m not finished becoming who I’m gonna be when I grow up yet. These things don’t just go away when you become a parent. I cannot effectively take care of anyone if I am not taking care of me as well. So while some may see doing things just for yourself as selfish, I wholeheartedly disagree. I think it’s selfish not to. It’s selfish not to make sure you’re at your best to fulfill all the roles that life hands us. 
Tonja 

Rock star

So a couple weeks ago I got a call from Parker’s resource teacher at school. There was a field trip coming up and they were worried that perhaps it would not go well with his recent behaviours. He’s been a bit of a jerk lately to be honest. And each day is kind of a crap shoot on what kind of mood he will be in (gotta love puberty). 

I really didn’t want him to miss out on a field trip that all of his peers were getting to go on, but I did understand where they were coming from. They didn’t want to be all the way in Vancouver and have Parker melting down and having no way to  remove him safely from the situation. 

So this is where one of the silver linings of our current situation comes in. Parker has 2 staff that work each day with him and they could covertly follow along to Vancouver and be a phone call away if Parker hits his breaking point and needs to leave early. He wouldn’t even be aware they were there. 

And in typical autism is a fickle bitch fashion, he was AMAZING. We had everything in place to deal with the jerky behaviour and there was none. It may seem like a small thing, having your kid go ona school  field trip. But when you throw autism into the mix and the love of predictability, you literally never know what each new situation will bring. We are so lucky he’s got a great team at school who are up for the challenge and equally lucky for the people who were his safety net of things became too much.

So I am a super proud mama and our village of support are proud too! I love seeing our boy succeed in situations that could be difficult for him. He’s growing so much. 

 

Tonja 

Stitch by stitch. 

      In the summer of 2014, when we made our difficult choice of having Parker live at a staffed resource, I found myself having a very difficult time dealing with my emotions. I’d cry at the drop of a hat, yell when there was no reason to yell, and fight just to ignore how I was feeling. Thankfully I had some sick leave available and I was able to take a few weeks off work. But what I found was, that in the quiet moments, the moments that I would normally be so stressed out I couldn’t see straight, I had no idea what to do with myself. I found I couldn’t focus enough to even watch tv, my mind would wander and the feelings of guilt, and worry and sorrow would make it impossible to be in the moment. I didn’t make plans with friends because I didn’t feel like I deserved to go out and have a good time. 

    I found myself incapable of relaxing, to not be “on” at every moment. My ears perked at every sound, being so used to listening to make sure Parker was safe. I didn’t know how to connect with my other children anymore. I now had what our family needed, time to focus on them. Time to spend time with them, to nurture their spirits, to be their mom again. And I didn’t know how to make it happen. I was shell shocked. I didn’t know how to function without the constant stress , and worry, and frustration that filled each day. 

    So I decided to learn to knit and eventually learn to crochet. I needed to find something that I could focus on, so I wouldn’t sit and dwell on our decision and how life was going to look now.  At the time I was first learning to knit I found this poem that really spoke to me. 
My fingers tangle and trip

over sloppy knitting

like a deer 

learning to walk on crooked 

pencil legs.

Like a song I don’t quite

know the words to.

I move unsteadily,

uncertain, with short shaky breaths. 

Remember when I taught my lungs

to breathe again in August? 

After so many mistakes that

I didn’t know how to

reconcile.

I wanted to die out back 

of a hotel in Montana, dramatic 

in the weeds and grasshoppers.

Needles fighting, I 

spread a mess of mustard yarn

across my fingers like

I need a napkin.

Has anything changed?

Dropped stitches, weary knots leaving

gaping holes.

I think of how I ran away

from it all.

There are days I still look back.

But I look straight into the sky

as if demanding an explanation from

God himself.

I have to shade my eyes

sometimes, 

seeing blinding brilliance 

in the sun now.

I can’t live any longer only 

by the light it sheds 

everywhere else.

No, in births of light and bursts 

of truth and slow, overdue breaths

is a song I’m finally learning

the words to.

You will not defeat me.

I rip out my knots

and begin again.

~Sharon Stewart

    So I worked hour after hour learning how to weave my yarn into something resembling a finished product. I loved learning enough to be able to create presents for the people around me, that the things originally rooted and created during such sadness could bring joy to others. And I found that with each stitch the feelings of hopelessness, despair, frustration and failure were slowly replaced with feelings of renewal, hope, determination and happiness.  

    I’m slowly adapting to our new normal. It’s not happening as fast as I’d like, I still have many moments of sadness, but stitch by stitch I am getting there. 
Tonja