The story of a whizzy-wheeled home: full of life and laughter, and written with a whole lot of love, a touch of grace and bucket fulls of hope.

Friday, July 30, 2010

1 hr 22 mins

of pure therapy...
therapy of the best kind (and free, too!)...
godmummy therapy.

1hr 22mins of chat.
all be it over the phone, over the oceans and continents that separate us and in different time zones...

it always feels as if you are here with me though, talking over coffee, sitting in front of a fire and holding me, physically, emotionally and spiritually.

so, you really aren't that far away, graunty.
yes, we would both much prefer to be close physically but I know that you will always be there for me, as I am here for you.

hooray for fairy godmummys...

Thursday, July 29, 2010

Shoes...

I vividly remember the visit to the shoe shop to buy Niamh's first shoes.  She was so excited, walking around picking up this pair and that pair, liking those ones and those ones too - and always the impractical ones, white or cream with a touch of bling.

And then she tried them on - pink sensible shoes that mummy had chosen - not a perfect pair on mary janes but they would do.  The huge smile that crept across her face; the comedy walk as she lifted her heavy feet from the floor; and finally her running wildly around the shop floor, ecstatically happy. Niamh's first shoes...

And she still loves shoes... doesn't every little girl? 
Doesn't every grown-up girl?
Clarks to Jimmy Choo...
Christian Louboutin...
Manolo Blahnik...


pretty in pink

And today our little baby girl Eilidh went for her first shoes... a little girl who will never walk, or who is very unlikely to walk, on her own two feet, in her own two shoes...
 
I wasn't looking forward to it at all... another step of heart wrenching acceptance, but another step on our journey...
 
Niamh was adamant that her sister's shoes were to be pink... and pink they are with delicate little silver-studded flowers too.  They were put on Eilidh's little chubby feet and instantly you could see how proud she was of them - my first shoes!  There was no walking, no running, just acceptance and pride. 
So, Eilidh has her first pair of shoes.
The world is her oyster - just as it always has been, SMA or no SMA.
I'm ready for the next steps that we'll walk together, Eilidh.
We're on this journey together...
I promise...
 
 
"You have brains in your head.
You have feet in your shoes.
You can steer yourself in any direction you choose.
You're on your own.
And you know what you know. You are the guy who'll decide where to go.”
 
Dr Seuss


And of course, Niamh managed to get a new pair too...

Esther and Gertrude...

great women
inspirational in their own ways
a bathing belle and a channel swimmer
beautiful and strong

and last night, with not a drop of goose fat in sight, two bathing belles took themselves on an adventure. actually i think that i was leading.  my journey - emotional and spiritual and a whole load of fun ...

over the hills, although not quite my intention - but we were following the purple path - and through the darkening sky with billowing clouds towards Gourock and the swimming baths for a midnight swim...

post in the making

Wednesday, July 28, 2010

First bloom...

at last
the first sweet pea has bloomed
a little delicate purple flower
which brings much joy
after a long wait...


delicate purple

sweetpeas... such a firm family favourite
they evoke so many memories of happy days, of summer shows, of summer weddings.
"sweetpea" is also a term of endearment in our family too; saved, for me at least, for my little cousin who I love so very much...

Pitiful sleep

serves me right for writing about sleep and my hiding place from the world!
last night sleep was pitiful
and today is difficult...
but I need to start afresh, every day a new and ever present possibility...

New Every Morning

Every day is a fresh beginning,
Listen my soul to the glad refrain.
  And, spite of old sorrows
    And older sinning,
    Troubles forecasted
    And possible pain,
Take heart with the day and begin again.

Susan Coolidge

Tuesday, July 27, 2010

Soporific terrific...

soporific...
what a beautiful word...
not quite sleep inducing itself but mildly hypnotic in the way it forms when spoken

benjamin rabbit was not soporific tonight
niamh fought sleep wildly and tearfully
scared of monsters
crying for my cuddles

why do they fight sleep?
the sleep of the blessed?

i love sleep
terrifically and soporifically

i hide in my sleep
hide away from the tears and the worry
avoid the all consuming thoughts of
SMA
standing aids
wheelchairs
adaptations
DLA

i find safety in my sleep
and can dream
of far away lands
and metamorphosis

in my sleep eilidh walks
and flys
and soars

she is beautiful
and graceful
and glorious

my family is happy in my dreams
while i sleep...

soporific...

and so to bed...
sleep the sleep of the blessed...

Monday, July 26, 2010

SMArty is the answer!

I don't like labels...
Clothing labels.
Job labels.
Disability labels.

My child is special - just like every child.
Yes, she has a disability.
Yes, she has special needs.
Yes, she is different but only in the way that we are all different and unique.

She is EILIDH...

Labels...
So, I don't like them... unless they are our labels of love...

I have a godmummy: a wonderful, loving and devoted woman; one of my best friends and my auntie.
When Niamh was born we realised that she was a great aunt - with a blue rinse, curlers and slippers. But she is so much more than that... young and funny and gorgeous... I decided that we needed a different title so "grauntie" was born - a term of endearment which we have grown to love...
No one else, in my eyes anyway,  is entitled to use the title... but I have conceded to Gruncle (who is gruff and grumpy and Grauntie's big brother)

Grauntie, so far away in NZ, suggested we come up with a label of love for Eilidh.
I have really struggled with this but today it came to me...
Eilidh has SMA.
SMA children, typically have above average IQs...

SMArty is the answer!

So, Grauntie and SMArty - I love you both so much.
Thank you for being in my life: I am so very grateful.
x

Thursday, July 22, 2010

"Were you mad before?"

Ok, I like Eilidh's Neurologist.
Just as well really...
I have worked with him - well kind of! - and now he is Eilidh's doctor.
I trust him and respect him.
More importantly, however, he makes me smile and laugh.
Even now, when things are difficult.
But he does break bad news terribly...

We'll call him Dr N - or Dr Neuron...
An excitable cell, transmitting information!
Dr N is Dr N and he says it like it is.
No beating around the bush.
Just open and honest and that's what I need.
He puts D at ease too and that's so important to me...
Eilidh will grow to like him I'm sure.

I am a doctor, trained in paediatrics and palliative care and now working as a GP. 
I never expected to find myself in the position of mummy to Eilidh with SMA and yet, occasionally, I think that I have worked towards this role all of my life.

I find it difficult to trust other doctors. 
Do they know their stuff? Can they communicate well?  Are they good with children?
I know that I am a good doctor, but are they?

I have total faith in Dr N. As a person. As a friend to be.  But most importantly I have faith that he will look after Eilidh and help us on this journey we now find ourselves on.

And then he asks "Were you mad before?" - as in pre-diagnosis - well, at least that's what I took it to mean. I laugh. I'm not insulted. "Yes!" I reply.  He was just being himself.  Iain - just as he should be; only he could get away with asking a question like that.

3 months and counting until our next appointment!


"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind."



Dr. Seuss

Monday, July 19, 2010

By the blink of an eye...

... anything is possible.
this story fills me with joy and starts my day off well.
I am grateful for Adam and for his poetry.
By day he dreams and in his dreams he escapes...

A Silly Poem

At my school the green fish digs a hole and chases the dog down the road.
In the yard the big dinosaur laughs out loud and tells me a joke.
I laugh.
Later that day I saw a bug eat my teacher for lunch.
The lion reads a book in a tree and then, a scientist with a monkey drives a car too fast through the air.
In my dream, I catch a spaceship to the moon.
I go off looking for hot dogs.

Adam Bojelian


Adam is 10 and has severe cerebral palsy but loves creating imaginative verse... and all by the blink of an eye.
How utterly and trully inspirational.
Adam, thank you: you have made me smile today :)


http://www.heraldscotland.com/news/home-news/10-year-old-wins-award-for-poetry-written-by-blinks-1.1041851?localLinksEnabled=false

Sunday, July 18, 2010

Brave and Beautiful?

‎"We would never learn to be brave and patient if there were only joy in the world."
Helen Keller
The one person who has read this blog, other than D, thought it was brave and beautiful.
People think that I am doing so well.
That I'm amazing
And strong.
If I'm honest,
I'd rather have more joy in my world...

Friday, July 16, 2010

Low and Empty...

I'm low. 

I feel drained and so very empty today, totally overwhelmed by the events, the busyness of this week. 

I have tried to seek out some quiet time today, set aside time for a sanity break, but, instead I became consumed by form-filling (why do the DWP have to make their Disability Living Allowance application forms so complicated? And I am a well educated woman...) and anxiety...

It is sometimes difficult to break this feeling of emptiness and sadness... to distract myself I wandered over to Kelle Hampton's wonderful blog "Enjoying the small things"...


... she is truly inspirational and I've been following her since before Eilidh's diagnosis, but more about that another time... and there she was struggling too with her ebb in creativity and zest...

Today she reminded to taking nothing for granted, to be grateful for all that I have and do and see... sometimes I forget to feel grateful and in those moments I'm probably not experiencing life fully.  I need to be more conscious of all that is important to me and be thankful for them...


"As each day comes to us refreshed and anew, so does my gratitude renew itself daily. The breaking of the sun over the horizon is my grateful heart dawning upon a blessed world."
Terri Guillemets

Wednesday, July 14, 2010

Perfect in her imperfection...


"A beautiful thing is never perfect."
Egyptian proverb

But Eilidh is perfect AND beautiful...


sunshine eilidh

Planning for the future...

Our meeting with Maggie on Monday was enlightening... so much information to absorb and think about, so much to plan for the future.

At the moment Eilidh is just Eilidh... a little girl, cute as can be, with a cheeky grin and a devilish temperament.  She has a smile which melts my heart and such an infectious giggle.  It is so true that children with SMA love being touched and tickled - even thinking about tickling her and hearing her giggle brings joy to my heart!  Her sister adores her, that much is obvious, and she watches Niamh with awe and wonderment.  She is perfect, but perfect in her imperfection.

Eilidh is perfect in her imperfection.  She does not sit steadily or crawl and she will never walk, skip or jump.  This is what sets her apart from her wee toddling friends.  It is difficult to imagine her future, one with standing aids and powered wheelchairs, and yet here we are having to plan for a future that we can not even begin to imagine.  How can we do that?

It's waiting for the inevitable. Waiting for this disability to set Eilidh apart from her peers.  Waiting for it to become obvious and it's horrible.  I hate waiting. I hate not knowing what the future holds. I hate having to take each day as it comes - I'm no good at it, but I need to learn, don't I?

For the moment we must enjoy each day, enjoy the small things, enjoy the time with Eilidh and Niamh as a family who looks normal - even though we feel far from normal.  I must learn to take each day as it comes and I must make sure that I am the best I can be - mentally, physically and spiritually - and enable myself and be empowered so that I can look after my wonderful daughter and my beautiful family.  I know though that, first and foremost, I must look after myself...  Selfish perhaps, but true: ultimately, however, I want to be the best that I can be for my family...

Monday, July 12, 2010

Maggie Monday

Maggie, one of Jennifer Trust's outreach workers, visited today.
A lovely, friendly lady with a wonderful smile...
We welcomed her into our house and, quickly, I felt as if I had known her a lifetime.
I feel as we have lived with SMA for a lifetime already: this disease, this condition is part of our family now and we still have a lifetime of Eilidh and SMA ahead of us.

Maggie told us a little of herself and I felt more at ease.
She talked of Jennifer's Trust and SMA - 100 new cases a year, approximately thirty of those children diagnosed with grade 2, and only perhaps ten to twenty families throughout Scotland living with SMA today.  A niche club no less!

And then we started with our questions - none of which were deemed too silly, too daft to ask.  We were free to talk about anything and eveything. Our minds started to race and twirl and whizz to the point of overload...  Wizzybugs, wheelchairs, beds, sleep systems, hoists, cars, adaptations, dla, motobility, grants, charities... So much to think about, a future to plan... 

Maggie was able to summarise families worth of experience in an easy to follow way - not too much information but just enough for now, to enable and empower us to move forward over the next few days and weeks.

And I know that she will be there for us, a telephone call or email away; there to answer questions or research things for us, a shoulder to lean on, a listening ear, and I am grateful to Maggie.  I am grateful to Jennifer's Trust and I am grateful to those who have given money to the Trust who brought Maggie to us.  To our home and family.

Thank you

Saturday, July 10, 2010

"us" time...

"The more you invest in a marriage, the more valuable it becomes."
Amy Grant

We are so in need of "us" time... we need to be quiet within our marriage, together, uninterrupted by the madness - the joyful and wonderful madness - of family life.  We need this for our relationship but also as individuals, for our souls.

I'm not sure why but I have chosen to take us back to the wee place we spent the weekend after finding out we were pregnant with our second baby; Eilidh as she now is.  It just feels right, to go full circle in the 2 years it has been.  Perhaps I want to remember and reflect upon that time when anything was possible for the child that was growing inside my womb?  When SMA and disability weren't possible and they certainly were not words in our every day vocabulary.  Perhaps I want to return to that moment and again consider what is possible for my beautiful little girl... it's just different this time and we all have to mend and mould to ever new possibilities.

But this weekend is also about my marriage.  I want to rediscover D.  I want to give him my undivided attention.  I want to talk and laugh and giggle with him. I want to explore our dreams...  I think that he will want to sit and reflect and read from the comfort of his deep rolltop bath, soothed by the warm waters - this is what he dreams of doing from amidst our chaotic life, but never quite gets too do.  He is a simple man, sustained by the simple pleasures of life and I love him even more for this - it makes him who he is. My beloved, my friend.


"The most important marriage skill is listening to your partner in a way that they can't possibly doubt that you love them."


Diane Sollee

Friday, July 09, 2010

Fabulous Friday

My plans for today...

"Join with those who sing songs, tell stories, enjoy life… because happiness is contagious. Join those who walk with their heads high even when they have tears in their eyes. Avoid those who… have never shed a tear"


Paul Coelho

And that's exactly what I am doing today, spending time with my friends. Friends who have listened to my troubles and held me as I have cried, but they have also lifted me high above my pain and sadness, shedding light upon my days. I am blessed to have them in my life.

Thursday, July 08, 2010

Squiggle tears...

Today I saw my little girl stand tall... and my, is she tall!
She didn't stand on her own two feet and she didn't stand independently but Eilidh stood up today - hooray!
I'm trying to be positive...  I'm trying so very hard...

Eilidh stood in Squiggles today, sugar coated in pink, but still an ugly piece of equipment which encased my beautiful daughter.

I was out when it arrived and as I walked into the room I was taken aback - a real life elephant which I could not get away from, that I could not avoid.  I didn't know what to say.  I don't know what to ask.  I stood and looked at it. Speechless.  D had had a little longer to get used to it and, dear D, he was sitting there with his lunch - life carries on...  He reached out to touch me and motioned for me to sit beside him - we both needed the other for support and comfort for what we knew was going to be a difficult moment in the acceptance of Eilidh's diagnosis.

Lecky Man demonstrated Squiggles, her range of movement, the straps and padding, her maneuverability and how she could fold.  He talked and Eilidh's physio, had wee bits to add too.  I wasn't able to give them my undivided attention; all I could think about was how Eilidh would be in this contraption and how I would feel having to put her in to it.

She cuddled in to me, unsure of the strange man in the room.  Lecky Man asked me to place her in it and as I moved closer to Squiggles I could feel Eilidh recoil in my arms.  She screamed and cried with huge big tears rolling down her cheeks, reaching up for me to lift her out.  I tried hard to comfort her as my heart was breaking.  I wanted to pick her up and tell her that everything was going to be ok, but I knew we had to do this for her benefit and so instead I whispered in her ear that I loved her and that she was doing so very well.  She looked as if she was being put into a some medieval torture device or a straight-jacket even. She looked uncomfortable and scared and restricted.  She wasn't Eilidh for a moment: I had to look closer, look past the frame and seek out her smile and her eyes and then I saw her again.  Lecky Man slowly angled her forward until there she was, standing tall in front of us.  Her height surprised me - she's going to be tall like her big sister - and then I realised that, for the first time Eilidh was standing... a special moment in my toddler's life, one to be treasured...

Eilidh settled and stayed with Squiggles for about 5 minutes, pacified by silly daddy, stickers and Niamh's magazine.  She was more herself, cheeky and strong willed but, at the same time, anxious too.  I was relieved to take her out and cuddle her, hold her tight and reassure her...

I know that Squiggles will become a part of her day to day life and as she does Eilidh will adapt; as Eilidh adapts we will adapt too.  But today, on the day that Eilidh first stood tall, I came face to face with the harsh reality that my beautiful daughter is disabled... Our journey has only begun; we still have so far to travel...

Wednesday, July 07, 2010

... and life carries on regardless


"If you sleep on it, make it up.
If you wear it, hang it up.
If you drop it, pick it up.
If you dirty it, wash it.
If you open it, close it.
If you turn it on, turn it off.
If it rings, answer it.
If it cries, love it."

the well known anonymous

A needy day...

I keep thinking that I need to write positive things, to keep myself buoyant, to keep myself from drowning, but I am realising that I need to also recognise when I am low and in need of a cry and a cuddle and a little bit of support.

Yesterday was one such day... I was feeling so very let down...

Friends and family help you carry some of your burden in the early days and then slowly they drift off to carry on with their busy lives, leaving you feeling alone and abandoned.  I know that they are never far away, that they are there for me and that I can call them at anytime about anything.  But to tell you the truth, I want them to continue to carry some of this heavy burden for me.  I want them to phone, to write, to pop in, to remind me that they are there for me and my family, to remind me that we are all in their thoughts and that we are loved and that, bottom line, everything is going to be ok.

Of course I could phone them, but I just feel, for once in my lifetime, that I should be looked after, that I shouldn't need to do the phoning, the chasing, that I don't need to make the effort because I am the one that is needing...

And then came the time to put the girls to bed... Niamh is so excited about going to ballet school next week - it's a week long summer school with Scottish Ballet - and has her beautiful stripey leg warmers ready! And there she was telling Eilidh that one day she will be big enough to go to ballet too and dance with Niamh... and I cried. I cried huge tears of loss; for Eilidh, for Niamh and for myself.  I cried for everything I could ever hope for for my daughters...

Why did this have to happen to Eilidh? To us?

Tuesday, July 06, 2010

Be happy...

"be happy, or you'll forget that you ever lived"
a quote by me
and it's based on fact, or truth, or at least research...

http://www.neurology.org/current.dtl#ARTICLES

http://news.bbc.co.uk/1/hi/health/10507074.stm

so I need to be happy - joyously happy and aware of my beautiful life, now in the present lest I forget in the future. And how could i ever want to forget my wonderful life, challenging as it may be in the future, and my adorable family...

Sunday, July 04, 2010

Spiritual Sundays

I am a Christian but my faith is not strong. 

I would say that I am spiritual.  I am more comfortable about saying that and sharing this fact about me with others (perhaps it's because in this day and age we are generally more comfortable with the term "spiritual" than "Christian"?).

What is even more true is that I am reflective or introspective. I observe myself: I examine my own feelings and, in a spiritual sense, my soul too. As a result I grow mentally and spiritually - or at least that is what I hope for.

I have found myself reflecting far more than usual over the last few weeks.  Perhaps as a form of self preservation since we got the news about Eilidh's diagnosis of spinal muscular atrophy.  I feel the need to grow before this pain inside of me tears me apart or drives me insane.

I hope to continue to reflect and grow throughout this journey, not only to benefit myself but also my family. I strongly believe that my spiritual well being is paramount and that I can heal myself and my family.  I can not claim to physical healing but to the spiritual healing that will allow us to take each day as it comes.

I am a Christian. I believe in God and I know that He walks with my family. I put my children in to His trust as soon as they became a possibilty.  I am yet to put my own trust in Him. Today I met a man called Joel - perhaps he will help?

So, Sundays are my spiritual days and perhaps I'll share them with you here. Perhaps I'll talk of church and God, of His mercy and His grace. Or perhaps I'll reflect and grow...

This is part of who I am. It's part of who my family are.
And when it comes down to the bare bones of it all, it's all about LOVE.
The glorious love of God and the love I have for my family...

Saturday, July 03, 2010

Where am I going?

Where am I going with this blog?
I'm not very sure...

What is it about?
Me, my family and my love for them, and the discombobulated life that we have...

Why so discombobulated?
Because my perfect little girl was diagnosed with spinal muscular atrophy and our world has been turned upside down...

When?
Just 5 weeks ago - a day that I'll always remember but wish I could forget...

How could this happen?
Fate brought me to meet a wonderful man - my beloved, my friend.  Love led to marriage and children.  And genetics were then to play their hand...

I am so, so utterly sad.
Actually, I am devastated...
I feel empty and lost; that much is certain...

It is difficult trying to describe how I am feeling - words alone seem insufficient.  I feel such deep, gnawing physical pain.  If and when I allow myself to feel it, even for a moment, I can hear my heart breaking into millions of pieces...

So, where am I going with this blog?
I want, for some unknown reason, to share my story with you...
Perhaps we can learn together?

Friday, July 02, 2010

fearless & free in the morning...

"The more you are motivated by love, the more fearless and free your action will be."


Dalai Lama XIV

Thursday, July 01, 2010

Is love alone enough?

Yes! 
Most definitely...
It has to be...


"Love alone lightens every burden, and makes rough places smooth. It bears every hardship as though it were nothing, and renders all bitterness sweet and acceptable."

Thomas A Kempis
I stumbled across this quote today and it is so, so true.
 
I know that it is early days. I know that the enormity of our recent news is still to hit me, to hit my husband and my family. I know that the ripples will be felt far and wide amongst my friends and community. I know that life feels so surreal at present and I so wish that I could wake now from this dream, but I am holding on tight to the love that my husband and my children so adoringly give to me.  The love that I feel for them, so real, profound and infinite, in return gives me strength: it reminds me that I am alive; that surreal as this moment is, I am living it, feeling it and that this isn't a dream.  I believe that love will indeed save us and lighten our burden as we learn to take each day as it comes.