Friday, September 17, 2010

This is SMA...

Eilidh is 19 months old and we are still very early on in our journey with SMA...
It's been 3 months, 3 weeks, 16 hours and 25 minutes since we heard the words
"We got the results at 4.26pm. It's SMA 2"
and our world fell apart.
Her story is here...

We are taking each day as it comes,
whatever life may throw at us,
whatever the future holds for us.

This blog is in its early days too.
It's incomplete and a lot of the facts are missing.
I'm trying to stay away from the facts.
I'm trying hard not to look at research.
I'm trying so very hard just to be Eilidh's mummy...
Why the "just"?
Because I'm a doctor... A GP with a specialist interest in Palliative Medicine.
I need to keep in the here and now,
taking in each moment and finding the joy in my beautiful little girl.
I can't think about the future,
the "what ifs..."
Sure, she has SMA: a disease which robs her of her ability to walk
But she makes up for it in so many other ways...
She is beautiful and cheeky and strong willed and so very bright...

Eilidh is our guiding star. She shines a light upon us when days are bad.
Eilidh will teach us about SMA and how to live in the day to day.
I am blessed to have her in my life...
Our family is so very blessed.

So why have I decided to talk a little about Eilidh today?
Because their is a SMA BLOG PARTY going on!
I'm a little late but I didn't want to miss the party altogether.
I want to join it and embrace the party goers
because, you know what?
we belong to an awesome club
and my family wants to be an active part of it!

So where is the party?
and it's been going on for a day now - they know how to party!
Why are they partying so hard?
They want to raise awareness of this disease and raise $20,000 in the process.
What do you have to do?
It's simple...


■You can vote once EVERY DAY from now until September 29th at 5 PM EDT
■Go to, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
■That’s it! It’s really that simple

■Don’t forget to add your name to the list so you don’t miss a $20K vote.

■And…don’t stop there — SHARE! 

And if you have visited today... PLEASE leave a comment so that I know that you have been...

And here's to life with SMA, may we all be blessed and loved upon this earth.


Catherine Alexander said...

Hi Sheonad! I found your blog through the SMA blog party, I've had a read of most of it and it's beautiful, I love reading about you and your family and am so glad and excited Eilidh is getting her wheelchair!

Speak to you soon and you know where I am if I can help you with anything,
Catherine x x

ever hopeful mummy said...

hi catherine
thank you for stopping by and reading about us...
it's all just mad here really!
mad but lots of fun too...
hope that you are well
take care

Flower girl said...

Hey Mrs Mac
Its me flower girl, havent been on your blog for a few days so its good to catch up......not so good about the sats test though. :(
Just been onto the blog party site and voted. Looks like we're one of the top runners at the moment! Going to vote every day from now on!!!
love you lots