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   

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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  

Super siblings. 

  April 10th was National Siblings day. And as you can probably imagine,being the sibling to someone with autism isn’t easy at all. You often don’t get to go places you’d like to go because it isn’t a favourite place of your brothers or you get some of your belongings ripped up or broken when he has a melt down and is trashing anything in sight. You genuinely don’t know what each day will bring. You also get a set of parents that are so burnt out mentally and emotionally that at the end of the day there’s not a lot to give you and truthfully sometimes may take their frustrations out on you. 
But if you’re lucky like Parker is, you have two incredible older siblings. Ones who love him unconditionally . Ones who are proud of his achievements and who celebrate all the small victories in life. Ones that, despite all the heart ache and sometimes disappointment, are still there for him 100%

I’m so proud of the patience they’ve shown on this journey ,with all the sacrifices they’ve had to make, while we figured out how to keep our family happy and whole. 

You can see by the way Parker looks at his brother and sister how much he loves them and how important they are to him. It calms my spirit to know he has them always there for him, not begrudgingly, but because they truly love him. 

So in our house every day is national siblings day. I celebrate my other two very special kids and the amazing people they are growing up to be. 
Tonja 

Autism awareness. 

  “I am more than Autism”
This is what I would think my son would say to me if he could speak. As a parent with a child with autism it’s easy to only focus on that one single bit of who your child is. It’s always in the fore front, in his inability to speak or his preference to watch the same 10 minutes of a show over and over. 

But it’s so important to step back and look at the whole canvas of who your child is. You can’t properly see the full picture if your nose is pressed up against it. You need to step back to see all the bits and pieces that make the picture whole. The cheeky sense of humour, the love of a good tight hug. The way his face lights up when he sees it’s you picking him up from school. The way he can hear a song just one time and “sing” it perfectly. And the way that no matter how much you feel you might have screwed up as a parent, he’s there with unconditional love. 

Today is autism awareness day. But I’d prefer that everyone be aware that my son is so much more than his autism. He works so hard every single day to fit into the mold that society thinks he should, constantly having to fight his desire to do things that are deemed “too autistic”. I can’t even imagine how hard that must be for him. He’s challenged every day with trying to communicate his needs to those that care for him. Imagine living in a world where you don’t speak the same language! 

So for today and every day I want everyone to be aware that my son is an amazing individual who is funny, caring, sarcastic and loving. He has hopes and dreams and desires just like every other person on the planet. He just also happens to have autism. 
Tonja

Forms- the cursed F word. 

Even before your child is diagnosed with autism the first thing anyone wants you to do is fill out forms. What date did he do that or when did he start that. Ask anyone who’s had a few kids, by the time the 3rd one comes around you’re not quite as strict with writing down every milestone. It’s a sad true fact, there’s often less photos and less baby book entries. It’s not cause you love them less, it’s just cause you have so many kids! It’s busy! 

So whenever I’m faced with the daunting task of filling out forms I feel like I’m back in high school avoiding doing homework at any cost. I just really hate it. So much. But I also know it’s a necessary evil. We were part of a study for a few years through UBC and every time they came for a visit and assessment I would get a stack of forms to fill out. No exaggeration, there were usually 10-15 different questionnaires, and assessment forms. They gave me usually about 90 minutes to get them done. Ugh can you say writers cramp?

The forms have gotten less and less over the last few years thank goodness. But currently I’m about 2 weeks late handing in a form to my social worker. And she’s hounding me and I’m avoiding her like the good high school rebel I am.  I’ll get it done. I always do-eventually. I think mostly I just get tired of being reminded of how far behind my kiddo was at any given age. 

Anyhow off I go, putting off filling the form in for just a little longer,  at least until this evening anyway. 
Tonja