Breathe Life

 

On Friday I left my job. It wasn’t just my job. It was so much more that I’m at a loss to describe exactly what it was. Whichever, however, or whatever words I could use – this is the gist – it was a very big part of me and became a big part of how I identified myself – to myself. Deciding to give it up feels like a personal revolution. And like all revolutions, it’s forced change both painful and beautiful.

When I talk about self worth (internal self talk as well as external conversation) it’s surprising how much I tie worth into ‘what I do’. How much of myself am I investing? How radically am I living? For me, my ‘badassness’ is (I really want to say ‘has been’ here but I’m not quite there yet) closely linked to how much I feel I’ve earned my worth. If I want something, I’m compelled to play a big (very big) part in getting it. And here’s the thing – often that’s cool and right and whatever – but not always. It’s great to be actively involved in going after what you want. But sometimes it’s okay to accept the things that come to you without busting your ass for them. Sometimes it’s okay to enjoy the gift of…well, the gift of a gift. Not everything must be earned. That’s a hard thing for the ‘ego’ to believe. It’s hard thing for my ego to allow. But my ego… I don’t want it running the emotional show anymore. I want to rip up the blank cheques my ego’s been cashing on my emotional bank account.

My daughter Emlyn has Rett syndrome (if you don’t know about that already then you’re a new reader and should go back to read old posts). That diagnosis, that truth…it changed me. In good ways and crazy ways and helpful ways and harmful ways. Life is like that though isn’t it? Not just life with disability but ‘life’ life. A thing happens and we evolve to encompass it and integrate it. We make daily decisions based on things that are largely out of our control. It’s sunny so we opt to wear sunglasses, sunscreen, lighter clothes. It’s raining – we dig out the umbrella. My daughter was diagnosed with Rett so I got informed, active, and progressive. I can’t say this next part without hoping readers don’t take it the wrong way but it’s my truth and this is my blog so….Emlyn was diagnosed and I felt I owed it to her to be the most invested advocate, fundraiser, organiser and kickass parent I could be. That’s not un-true. I did and do owe it to Emlyn to be everything I can be for her. I also owe it to my husband to be everything I can be for him, and my other children to be everything I can be for them…and myself…to be everything I can be for me. And as I’ve discovered, for me, being everything I can means DOING everything I can. That’s a LOT of doing. That’s a LOT of hustling for worth if you put the worth in the doing the way I do.

 

Tell her I owe it to every heartbeat
Tell her I owe it to every exhale
Tell her I owe it to, owe it to her
Hands upon my chest

 

I owe so much of what I’ve learned about myself to Emlyn. I don’t think I’d have grown the way I have if not for her. I honestly wouldn’t know the measure of myself. I knew how to pick a thing up, but Emlyn taught me how to put it down. I only needed to listen to the girl who speaks, just not with words.

 

I wouldn’t compliment myself for what I’ve become
Tell her I owe it to her
Tell her I owe it to her
I wouldn’t praise myself for any good thing I’ve done
Tell her I owe it to her
Tell her I owe it to her

 

 

When I decided it was time to let go (of the work that wasn’t only work) my feelings of worth took a direct hit. My ego went bankrupt. I felt like a quitter even though I was peaceful with the decisions I’d made about leaving. I know that could sound contrary but it’s true. It’s me I was lost about, me and my value in this changing landscape. The work I’d been doing was inexorably entwined with my daughters disability. I’d made ‘if a + b = c’ equate as ‘if I can, then I should, so I shall’. And that’s what I did and I’m pleased and proud of the successes resulting from that equation. With that mindset however, you can imagine the new algebra my ego did (btw…my ego and I both suck at math so don’t expect this to make sense). The new (flawed) math looked like this ‘If you can, and you could, but you don’t and you aren’t…then you are a quitter and valueless and no longer worthy!’ Thankfully, I have some friends who slapped that stupid right outta me. This is what they said. ‘YOU ARE ENOUGH’. And they’re right. I am.

On Friday I left my job that wasn’t only a job and the reasons are ones I’m happy about. More than happy about. It was the right decision on every calculable level. It serves the greater good for the work I was doing. It serves the greater good for the person I am becoming. It’s liberating and it’s scary. Writing this post is scary. ‘Underpants on your head’ scary. ‘No air in the lungs’ scary. And do you know what? I think most things worth doing are a little like that, don’t you?

The future is an undiscovered country that I’m eager to visit.

Anyone have a map?

 

 

 

 

 

 

 

 

 

 

Categories: Music | 1 Comment

Tossed Salads & Scrambled Eggs

Emmy1stBirthday

 

Dear Emlyn,

 

Ten years ago today is the day we met. Happy Birthday my precious girl!! I can’t believe you are 10 years old. The picture up there is you, Daddy and I on your 1st birthday and that only seems like a-few-blinks-of-my-eye ago. I think the days must be passing so very quickly because you fill them all up with happiness. When I look at this picture the thing that stands out is your eyes – the way they look directly into the heart of everything, a look that makes me feel more seen than I’ve ever been or am likely to ever be again. I love that you look so deeply, and it makes me happier than I can tell you that you seem to like so much of what you see in the world. You are beautiful all the way through my love. If you were a stick of seaside rock you would be a rainbow of awesome. The brightest colours and the sweetest flavour.

Do you know what else I love? The way you show how loved you feel. The smiles you share with everyone who cares for you. The joy you take from pre-chewed gum. The delight for perfume and lippy. The way you wanted tossed salad & scrambled eggs for your birthday food. Who else would want that? Except maybe Frasier Crane. Oh my Emlyn, you are the tonic for all that ails me.

We are the luckiest family, do you know that? We get to spend our lives with YOU!! Your Gramma called you ‘Tiny Miracle Emmy’ because you were a longed-for blessing. You, my little chickpea, are loved so fiercely, so vastly and so very unconditionally.

Do you know that when you were born Daddy & I cried and cried with the happiest tears? Do you know that your Great Granma & Great Grampa were in the hospital when you arrived and they held you, quietly speaking blessings and prayers before you were 30 minutes old? Do you know that before you were born Ryan wanted you to be a girl, and so did Grace and so did Cam? You made them ALL happy (a first, I can assure you!). Emlyn Coates, filling the world with joy from the second of her birth. That’s quite the achievement, but hardly surprising for the bright soul you are.

Ma petite chérie, il mio tesoro, chickpea, egg, gremlin, bella, bella, bella, sweetie-my-heart…may every day of your life be so full of the love and happiness it has been so far. May you shine and have all good things. May laughter chase you and giggles overtake you.

 

Thank you for being my precious girl, I am blessed among women.

 

AND Happy Birthday Tiny Miracle Emmy xxxxx

Categories: Music | Leave a comment

Unsteady

 

watch the video and listen to Unsteady by clicking here

 

I think one of the hardest things in this crazy, complicated, wonderful and ever-changing life is to work out how much to let go and how much to hold on. To hold something loosely enough for freedom, but tightly enough for connection. Which is something especially true with adult children. I have a fear of being ‘that mom’. The one calling so often that eyes are rolled and sighs are heard miles away. I don’t want to choke them with a maternal stranglers grip, or stunt their time to fly. To that end I keep the ‘roots and wings’ thing fixed firmly on my inner eyelids. I know I’ve done my job with ‘roots’….but ‘wings’ is way harder. Still, I try, and I think if you asked them they’d say I’ve been doing okay at it. I figured I was learning to balance the grip , that it was okay because they know when to reach for a tighter hold. To say – with and without words – ‘I’m unsteady, I need you‘.

 

Hold, hold, hold on to me

’cause I’m a little unsteady, a little unsteady here

Hold, hold on, hold on to me

’cause I’m a little unsteady, a little unsteady here

 

 

Grace is in her 3rd year away at university. She loves it. Loves her independence and loves all the experiences she’s having without us. She’s learning, growing, struggling. She’s maturing. Plus she’s doing it all in a much less dramatic way than I did, as her growth reflects. She’s like a tree with symmetry. The wind has neither pushed it to the side or stripped its branches. The leaves are healthy, saltwater not eating past the protective outer layers. The cold not altering the strength or depth of the roots.

She’s coming home this weekend. She said ‘I need to be at home, I just…I just need HOME‘. This translates as something like ‘I need a quick re-grounding. I need to see dad’s face. I need to sleep in my bed and drink mom’s coffee. I need to pet my dogs and snuggle my sister. I need to watch my brother play x-box. I need to smell my childhood and taste the things that make home…home.’

 

If you love me, don’t let go

If you love me, don’t let go

 

 

When I moved to England I was 18. I can vividly remember those feelings. The ache and scrape in my guts that said exactly those things. ‘I want to go home, I need to re-connect. I feel lost, adrift, alone. I’m not ready to be a grown-up.’ I wanted food only my mom could make. I wanted our ragged and abused couch. I wanted to hear country music on the morning radio and classic rock in the evening. I wanted my mom’s coffee. I wanted the smells of familiarity and the sounds of comfort. I wanted my sister to hit me over the head with the remote control and to hear my dad laugh. Obviously, what I really wanted was some sense of safety, a reminder of my self. England might as well’ve been Timbuktu for all the familiarity it gave me. I was – frankly – overwhelmed, underprepared and had a critical case of culture shock. I’m honestly still a little intimidated by British people – I’m never completely sure if they’re being sincere or if I’m Miss Gullible Girl and the butt of a joke I don’t get. I’m told this is NOT an uncommon fear for fellow ex-pat North Americans. Anyway – I digress. The point is, I know what it’s like to be feverish with homesickness.

 

Mama, come here

Approach, appear

Daddy, I’m alone

’cause this house don’t feel like home

 

 

Then there’s this whole other thing – nostalgia. Being homesick for the past. I get homesick for the years when all the kids were still living at home. I often think I’ve spent more hours missing people than I could ever count. In fact, I bet it’s fair to say I am always, constantly, in a state of mild-to-severe yearning for someone. My mom, my dad, sister, brother, gram, grampa, friends and my two oldest kids. Is that normal? I’m not sure. How much to you let go – how much do you hold on?

 

If you love me, don’t let go

If you love me, don’t let go

 

 

Something really awful happened to one of my kids a couple weeks ago. Something that pressed every one of my vulnerability, panic, and fear buttons. I haven’t actually slept through the night since. The sirens are  squalling in my dreams.

This story isn’t mine to share, so I’m not. But I want you to know what I’ve learnt. For all my talk about balancing the grip – which is just bullshit of another flavour.

You hold on to your kids no matter their age, and they hold on to you just the same. The grip may seem relaxed, but that’s an illusion of slack. The truth is – a taut, mighty, reinforced, and formidable tether wraps around your heart and theirs. You can’t let it strangle you, that’s the truth alright, but if something gives it a little tug – you just hold on until you steady. Just hold on.

 

Just hold, hold on, hold on to me

’cause I’m a little unsteady, a little unsteady here

 

 

 

 

Categories: Music | Leave a comment

Humble & Kind

*this video starts with Tim McGraw talking about the song for about 10 seconds and then the song begins*

Today is Remembrance Sunday. Like many of my age, I think about my Grampa, and his service during World War II, on this day as well as on Remembrance Day. As a kid I would question him (lacking the sensitivity age would temper me with), constantly curious about this man who stood taller than all others regardless of height. I wanted to know him as well as I could. I wanted to be the history keeper so something could be kept once keeping was done. I lived my whole life afraid of the day he would die, certain it would be the end of the world. He’s been gone almost 3 years now and the world didn’t end, though it is less without him. Because I asked so many questions (about everything) I have a vast library of conversations to call on. I hear him, in my head, at least once a day. Funny things he said, grumpy things he said, wise things he said. Sometimes I hear a line in a movie and I think ‘that’s Grampa’. Sometimes Darren says something and I think how alike they are. Sometimes I hear certain lyrics in a song. Lyrics that, while not his words, feel as if they are from his heart. This song is such a song. These are words he would have said. These are words he lived and passed on to his family. These are words I want my children to tattoo on the inner skin of their very selves.

You know there’s a light that glows by the front door
Don’t forget the keys under the mat
When childhood stars shine, always stay humble and kind
Go to church cause your momma says too
Visit grandpa every chance that you can
It won’t be wasted time
Always stay humble and kind

Hold the door say please say thank you
Don’t steal, don’t cheat, and don’t lie
I know you got moutains to climb but
Always stay humble and kind
When the dreams you’re dreamin’ come to you
When the work you put in is realized
Let yourself feel the pride but
Always stay humble and kind

Don’t expect a free ride from no one
Don’t hold a grudge or a chip and here’s why
Bitterness keeps you from flying
Always stay humble and kind
Know the difference with sleeping with someone
And sleeping with someone you love
I love you ain’t no pick up line so
Always stay humble and kind

Hold the door say please say thank you
Don’t steal, don’t cheat, and don’t lie
I know you got moutains to climb but
Always stay humble and kind
When the dreams you’re dreamin’ come to you
When the work you put in is realized
Let yourself feel the pride but
Always stay humble and kind

When it’s hot, eat a root beer popsicle
Shut off the AC and roll the windows down
Let that summer sun shine
Always stay humble and kind
Don’t take for granted the love this life gives you
When you get where you’re goin’
Don’t forget turn back around
And help the next one in line
Always stay humble and kind

There is a departed assembly of champions, a generation who sacrificed for the freedom we build our dreams on. The virtues they held to, not as common today in our replaceable, consumable world. This is what I will remember; great people at great cost, with mighty effort and unbelievable bravery, risked all for freedom I far-to-often take for granted. On returning, scarred inside and out, this man among many began a family in his freedom. And in his family he planted, tended, and harvested untold riches of love, admiration and gratitude.

Grampa

Categories: Love, Music | Tags: , , , , | Leave a comment

Beautiful – #Rettsyndrome

I was making corn chowder during my lunch hour today, with my music turned up loud and a smile on my face. I love soup, I love music…it was one of those moments that make you so grateful…for everything. And in that moment, that wonderful extra-grateful moment, this song came on. The perfect moment got even perfect-er with a glazed cherry on top.

It’s mid way through October, mid way through Rett syndrome awareness month. This can be a tricky month for families. Raising awareness heightens our own awareness of something we’re already super-aware of. It brings all the hard stuff right into focus. It means Rett is pretty dominant on the Facebook newsfeed for most parents because we’re often friends with each other – so we see each others posts. It’s hard for lots of reasons and I won’t go into that because that’s not so much what this post is about. This post is about gratitude.

It’s a blessing to see people
With their heads up to the sky still
’cause honestly for the same people
Life can be so real
I’m amazed by all your strength
And I’m grateful you’ve come through
So I take this time to stop a moment
And show my gratitude
For you…

This month I see people sharing their stories of hope. Their stories of participating in clinical trials. Their stories of friends fundraising for them, and friends standing beside them during the harder times. I see a brave mother leading a campaign. I see a father strong enough to share his vulnerability. I see educating and nurturing. I see love.

I put my lighter in the air for you
I see what you’re doing, I see what you’re going through
Put my lighter in the air, the truth is you’re beautiful, beautiful

I am so grateful to have such amazing friends. Friends that have daughters with Rett who get what my days feel like and who make me laugh about things I never dreamt I could laugh about. Friends who make sacrifices so that our daughters will all benefit from their experience. And for friends who don’t have daughters with Rett. For sharing, for truly caring and for believing with me that one day Rett syndrome will be cured. I put my lighter in the air for you all! The truth is – you’re beautiful.

Now put your lighter in the air for us,
Everybody sing it together, sing a new song
Put your lighter in the air for love, it’s beautiful, beautiful

Categories: Music | Tags: , , , | Leave a comment

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