Life, Love and Lyricality

  Dear Secretary Clinton, You don’t know me but still, I hope you’ll get this letter. I have no expectation that my words are unique…even so, I have to write them. This is not a practical letter, nor is it relevant in any context but the emotional. I’m sitting at my computer typing this and crying hot, frustrated tears. My chest is…

  Watching the CNN coverage of a Trump rally the other day I was surprised to hear my favourite band played loudly over the speakers as things wrapped up. I was even more surprised by the song choice. I’d like to think it was ‘tongue in cheek’ but I can’t quite make the stretch. Donald Trump is fully capable of contortion – he’s…

  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…

Tossed Salads & Scrambled Eggs

  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…

  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…

*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…

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…

I Need Air – Rett syndrome

This morning was a bad morning. Emlyn couldn’t breathe. She couldn’t stop her body – it trembled and spasmed and burned. Her hands grasped. Her eyes begged. Rett syndrome took complete control. And it pissed her off. No question about it, she was furious. We had two options after the worst passed – stay home or head to school. Today…

Lately I’ve been wrestling some emotional goblins. Fear, insecurity, doubt and indecision (and a few others that are way uglier and scarier). I’ve been reacting to them, rather than acting in spite of them, or fighting against them. It’s been a barren time; no…it’s been a wasteland. Like standing in the crater after an apocalypse.…

This post is pure selfishness. It’s not a happy one; if you’re looking for that – this ain’t for you. All I’m doing tonight is writing out the pain. This one is for me. Today I recorded a video of Emlyn. Not laughing. Not smiling. Not making choices or dancing in the kitchen. Every maternal instinct I have rebelled against picking…

I Love You Always Forever

Dear Gracie, I’m allowed to call you that today, 21 years since the day I first saw you. It’s also the first word I said to you….. ‘Gracie’. And then I cried. Tears of wonder, tears of victory and glory. And then I threw up. Let that be a lesson to you – say NO to Pethidine. I don’t know if I’ve ever told you this, but when you were…

Here comes the sun little darling, here comes the sun, and I say…it’s alright. This should have been the last day of the school year for Emlyn, but she decided to start the summer holidays a day early. I can understand her eagerness to do that – it’s been a tough year. Sickness, surgeries, back braces and exhaustion from a constant…

Don’t go changing, to try and please me You never let me down before Don’t imagine you’re too familiar And I don’t see you anymore

I wouldn’t leave you in times of trouble We never could have come this far I took the good times, I’ll take the bad times I’ll take you just the way you are

Don’t go trying some new fashion Don’t change…

“Do the one thing you think you cannot do. Fail at it. Try again. Do better the second time. The only people who never tumble are those who never mount the high wire.”

A few days ago I was talking with some friends, my tribe of weirdo’s, and in a moment of frustration said “I want to write a blog post and call it ‘I Don’t Suck and Neither Do You'”. As you can see, the idea took root. And it’s true. I don’t suck. You don’t either. Chances are good we’re both just doing our best.

Here’s an…

“We are more alike, my friends, than we are unalike.” ― Maya Angelou

Yesterday was Rare Disease Day. I watched on social media as friends and family shared pictures and facts. I watched [and joined in] as the various organisations representing Rett syndrome [and many many other rare diseases] shared information. I was humbled by the…

I moved from Canada to England when I was 18 years & 7 months old. I picked up and packed up and transferred my life 6,733 km from where I started. I was not very bright about a great many things, but I wanted my life to be an adventure and that was my grand beginning. I left everything but what I could carry in a suitcase. I knew a…