Thursday, September 03, 2015

My Glass Child - Part II






my glass child




I saw her today:
my glass child,
vying for my attention.

"Look at all of my certificates...
swimming...
star pupil..."

...

"Where will I put them?"

On my bed; I have a folder somewhere...

"Can I put them in now please?"

...

"Mum, PLEASE?"

And then I lost it,
tired and stressed,
anxious to make it to
8.30am:
heart racing,
head pounding...

NOT NOW!
I HAVE A HEADACHE!
SHE'S (Eilidh) DRIVING ME BONKERS!
I'VE STILL TO GET HER ON THE TOILET!
I'VE STILL TO GET HER DRESSED!
I'VE STILL TO LIFT HER INTO HER CHAIR!
THE BUS WILL BE HERE SOON;
WE ONLY HAVE 10 MINUTES...
NOT NOW!
PLEASE...
NOT NOW!

She skulked away -
quiet,
tears in her eyes -
as I, once again,
focused on her sister;
to her I'm always focusing on her sister.

School mornings are hard;
so very, very hard.
From the moment I get up,
until the moment the school bus leaves,
I seem to hold my breath,
rushing through what needs to be done,
caring for one,
encouraging the other.
Finally,
I breath
and 
relax.
My shoulders soften,
my mind calms.
It is done.
They have gone.
I have done enough;
until home time
when the caring
and encouraging continues.

And I worry:
my glass child is fragile
and breakable.





Monday, August 31, 2015

Myself



Always for others.
First.
and
Foremost.

Others before myself.
At home.
At work.
In charity, too

A beautiful heart;
Never selfish.
Always giving - 
reserves depleted.

I leave myself
behind.
Forgetting me.
Neglecting me. 

Gently, 
To soothe and salve 
my soul
I need to be
my counsel,
my steward,
 my shelter,
and my saviour,
remembering to 
never leave
myself
behind.

My heart then 
full and giving-
(to myself?) 
once more.














Monday, August 24, 2015

Chugging Along






We slowed down this summer, craving time as a family without the hustle and bustle of the every day, without the constant noise of the city nor the bedlam of technology.  Our world became only as wide as the river we chugged along upon; without hurry with no real destination in mind.  

In the beginning, before booking, it seemed a little mad to want to take our children, a Snapdragon wheelchair (and more recently a stookie...) on a canal boat, but one of the things our daughters love is our family's sense of adventure; anything is achievable with a spirit intrepid and bold.  So we booked... and the girls choose their beds on the plan of the boat.

After a rocky start - and a skipper to bolster confidence and add to the crew - we take to the water, working well as a team, bred by the finest - and strongest! - of Scots, fuelled by porridge oats and kind of spirit, chugging along the Rivers Stort and Lee.





The Stort Challenger



Lock View
Walham Abbey
Stanstead Abbot
Ware


The water swirls:
patterns on the surface,
rushing 
out 
or
in.
water rising,
water falling.
water stills.
The gates open,
no resistance,
moving onwards
to 
journey's pause.


No burden of technology and an untouched bag of books and crafts, the girls took to boating like ducks to water.  Niamh opened locks; Eilidh took control of the tiller; certificates for one and all; happiness all around.








We counted creatures and foul.  Moorhens, coots, ducks, canadian geese, heron, swans and grebe. We spotted boats.  Mr Otter, Mr Mole, Mr Badger, a couple of Owls, a Puffin, a herd of Hefalumps.  We were watchful for the dreaded Logopotamus and Stickodile (thank you, Ian No.2).  We revelled in the peace and quiet, in our family together, messing about and chugging along.


“Believe me, my young friend, there is nothing - absolutely nothing - half so much worth doing as simply messing about in boats.” 
Wind in the Willows 





canadian geese - just one or two!




"o rest a bit for tis a rare place to rest at" -
and it was, with ice creams to buy and coffee to be had





the river by Roydon




So a big thank you to Take A Break Scotland for making this adventure possible - we were fortunate to receive a grant towards the cost of our short break.


But most importantly, a HUGE thank you to all at Canalability who truly made this an accessible holiday to remember - without your kindness, dedication and love of the open water we could not have enjoyed such a wonderful family break.  After a rocky start you were able to pull out all the stops to skipper and crew with us.  Thank you Steve, Ian, Ian, Doreen and all your fellow volunteers: each and every one of you does such a worthwhile job.




Monday, July 06, 2015

Stookie






A moment.
Quick as a flash.
The usual bump over the door sill
and then silence.
No rattle of the chair.
No whizzing.
Just silence.
And then I realise -
Eilidh is lying on the patio
motionless and quiet.
I run to pick her up
and she cries.
I don't know what happened.
I do know this -
she wasn't wearing her lap belt.
A fat lip, a grazed chin and nose.
Tears fall fast.
She seems ok.
Paracetamol.
Brufen.
She settles.
She sleeps.
And when she wakes she's unsettled.
Just not quite right.
She won't let me touch her.
She won't let me move her or transfer her.
I know that all is not right.
More analgesia.
I'm home alone with the girls;
the hospital is a difficult choice.
I'll see how she is overnight.
She insists that it feels better.
She is awake all night.
We see every hour.
She refuses to let us turn her.
No more nonsense.
Daddy is back.
Granny can take Niamh.
The brand new emergency department beckons.
Tony at Triage.
Paracetamol.
Will, the doctor, reassuring and gentle.
X-ray, innocuous itself but the transfer painful;
a sticker as reward.
There it is,
in black and white -
A buckle fracture of
the distal femur,
fifteen degrees of angulation.
And my tears fall - I know what's to come.
Eilidh asks questions and I try to explain.
A long leg cylindrical cast.
Bright pink.
4 weeks minimum.
I can see she's worried.
I reassure her.
The staff reassure her.
And the cast goes on.
The pain is better,
The anxiety persists.
All she needs is time.
Home calls.
We step outside:
her wheelchair and her
Stookie.
SMA becomes invisible:
Her stookie, visible, trumping all;
Her wheelchair necessary, justified
And accepted.
For now at least
her injury is normal.





Wednesday, June 24, 2015

7 weeks



They have begun - the summer holidays. 
Seven whole weeks. 
49 days. 
I'm going to be brutally honest; I am dreading them. 
Many a mum has chatted excitedly about the lack of routine, the care free days, kids being kids.
The fun. The excitement.
"Enjoy the holidays!"
And inside I cry.

Seven whole weeks.
The days are not care free.
Physiotherapy - AFOs, standing frame, stretches and massage.
Transfers, lifts - bed, toilet, wheelchair, toilet, sofa, standing frame, wheelchair, and on and on...
Planning, double guessing, and planning some more.
Questions, demands, bickering.
Balancing the needs of my children, forgoing the needs of myself.
The impact, physically and emotionally, unpredictable.

I am dreading the holidays.
Anxiety is running high.
Panic that the burden will be too great, panic that I will break, lies close beneath the surface.
Seven weeks.
49 days. 
"Enjoy the holidays!"





Monday, June 22, 2015

"Don't worry about..."








D is a truly awesome daddy to our wonderful girls and as I wrote in his card "we are learning together, each and every day, that there is always more to parenting than first imagined." This aside - because life is one continuous learning opportunity - D is perfect just the way he is and is loved unconditionally and wholly as a result.

F. Scott Fitzgerald wrote a letter to his eleven year daughter in 1933. His sage advice is still relevant now - some not so much, however - and, with mosquitoes, flies and insects in general excluded, it reads like advice D would give the girls now.  There is much to learn from D and he has so much to give.


"Things to worry about:

Worry about courage
Worry about Cleanliness
Worry about efficiency
Worry about horsemanship
Worry about. . .

Things not to worry about:

Don't worry about popular opinion
Don't worry about dolls
Don't worry about the past
Don't worry about the future
Don't worry about growing up
Don't worry about anybody getting ahead of you
Don't worry about triumph
Don't worry about failure unless it comes through your own fault
Don't worry about mosquitoes
Don't worry about flies
Don't worry about insects in general
Don't worry about parents
Don't worry about boys
Don't worry about disappointments
Don't worry about pleasures
Don't worry about satisfactions

Things to think about: 

What am I really aiming at?
How good am I really in comparison to my contemporaries in regard to:

(a) Scholarship
(b) Do I really understand about people and am I able to get along with them?
(c) Am I trying to make my body a useful instrument or am I neglecting it?"





Thursday, June 04, 2015

Silence







Support came and went, but in some cases there was none offered.  Silence reigned heavy. Close friends, friends with whom I had shared my life with, nurturing an ever perceivable awkward, distant reticence which, even now, is uncomprehensible.

Here is a series of emails sent between myself and one friend some three months after E's diagnosis.  We are no longer in contact; life has moved on, we are walking very different paths, but memories of the good times are never forgotten.




Hi
I was just thinking about you today.
I thought that I would have heard from you over the past few months.
It has even made me wonder whether you got the initial email back in june?
hope that you and the girls are all well
take care

S


Hi S
To be honest I didn't know what to say...
Difficult to try and talk about such things from so far away
Looked after a child with SMA
Must be very difficult for you both with a lot of uncertainties

On a 5 week vocation right now
Try and talk to you soon.
Love



Yes, it's difficult to know what to say but sometimes it's better to say something rather than nothing. this was one such time!
but you're not alone. we have had support from those we didn't expect it from and no support from those we did.
difficult, I know... but what we are going through is hell...

S




It's hard to know what to say in times of difficulty, but to say something -  anything - is better than nothing at all.  Something demonstrates acknowledgement.  Something lets the person know that you are thinking about them, extending compassion and establishing a heartfelt - and most welcomed - connection.  Yes, you may stumble on your words.  Yes, you may worry about saying something wrong but please realise this, nothing you say will make the situation worse - nothing.  To remain silent, to say nothing, creates an overwhelming sense of abandonment and isolation: no one wants to feel alone in times of difficulty.








Wednesday, June 03, 2015

Support VII



" (I) was totally unprepared for news about Eilidh. I don't think anyone is ever ready for news like that; one has to really just survive a day at a time in the beginning. All one wants is for someone to say it's not true or it can be fixed, until the shock wears off. Trust in your own strength - you will find your way. I don't see SMA children myself, but the few we have coming through our ward are bright and resilient children who take every opportunity to do the best they can with what they have: their physical weakness in some way compensated for by an inner strength.

Our thoughts are with all of you."

Tuesday, June 02, 2015

Support VI



Handwritten letters, real and tangible.
Emails; no less hearty and sincere.


"My dear Sheonad

What can I say?  There are no words to express my feelings for you both, on the devastating news about Eilidh.  My mind is reeling and I just wish I could take you in my arms and comfort you. (I)  just want to take all your cares away and make it all better but unfortunately it's just not possible. But I do send you all the love I have and want you to know that I am with you everyday, if not physically then in my heart.  Now more than ever.
 
... this special little girl could not have better parents, with all the very best qualities to give her the life she deserves and I believe that she will bring you great happiness in her own special way."





Monday, June 01, 2015

Support V




Some letters arrived late, but late was better than never.
Some were resolute but the compassion was there, hidden amid the hand-penned lines.
This excerpt comes from a letter that was both late and resolute:


"You have been in my thoughts daily though I haven't written to say so, which is, I realise, more than remiss of me.  I had hoped I might be able to say something helpful from sense acquired in my long-lived years but such wisdom has eluded me.

I expect you have already been in touch with appropriate support groups and other parents who will hopefully become part of a permanent structure of help now and in times of crisis.  All I can hope for you is that you find courage and stamina to cope, remembering to keep in tandem the rest of the family's needs.  Your common sense and equilibrium will eventually "click in" as a sense of ordinariness return to your lives." 

Sunday, May 31, 2015

Support IV



"Our thoughts and prayers have been very much with you since we received your email, in fact we have found it hard to get your situation off our minds.  It is surely one of the hardest things that someone can face and it is hard to find the words that may give you some comfort and encouragement.

There is a wonderful old hymn "Great is thy faithfulness" that talks about strength for today and hope for tomorrow; I guess that is what you need right now.

It is hard to imagine why you should have been landed with this in your family, and I guess you would be asking the "why us?" question.  I liked what you said a few weeks back in a message to us: that you have always felt that you had been able to trust your children to God.  Our prayer for you right now is that you will find God to be closer to you and find some of that trust (and peace) for yourselves.  One of my favourite scriptures says "God is close to the broken hearted, and saves those who are crushed in spirit." (Psalm 34:18)

Much love, strength, grace, peace and courage to you both."





"Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!"

Thomas Chisholm




Saturday, May 30, 2015

Support III



"You are both friends who are close to our hearts, and we love you dearly.  I appreciate how difficult it must have been to write... our thoughts and prayers are with you both a you come to terms with E's diagnosis.  As friends we are here for you at all times, both physically and emotionally.  Please use our friendship at anytime.

E is a beautiful, bright child, and I hope that amongst the tears and questions of "why?" you continue to see the joy she gives.

I am praying for you both, and God is listening."




Friday, May 29, 2015

Support II



""I was so sad to hear about E.  It must be so painful for you all.  I know that at this time there is no ease for the heart to be had from words of reason and in the very assurance of the pain fading, there can be more sorrow.

Why us?

There is no answer.  Life can be so unfair.

I can only offer you my deeply affectionate and compassionate thoughts and wish for you that the strange thing may never fail you, whatever it is, that gives us strength to live on and on with our wounds."




Thursday, May 28, 2015

Support I



After the event 
came the letters.
Family and friends offering 
support
and
love,
lifting us high,
raising us above the 
depths of our
despair.
I hold these
words, these
sentences
dear,
returning to them often,
feeling the
compassion
they contain.


This week, in a series of posts, I will share excerpts from these letters with you; perhaps they will help others find a sense of peace at a difficult time.



"How can I start to offer you comfort?  Close your eyes and imagine me hugging you all individually.  Giving you great big "mother bear" hugs that envelop you, letting my love seep into you and give you strength.  I am with you every day in my heart and always will be...

You have a more difficult and different life ahead but it will still be full of love and laughter - it's perhaps just not what you had envisaged.  It will be deeper, more meaningful, more thought provoking, richer and more rewarding in many ways because you will take nothing for granted..

I had some good advice recently to help with the heartache: live for the moment; plant some little seeds for the future, but don't project what might have been as none of us know what the future holds and would have brought.  

We don't know what our individual destinies are - we may have stereotypical ideals and expectations but perhaps we just need to be "in the now", accepting and enjoying the present..."




Wednesday, May 27, 2015

Five Years On



Five years on - 
I continue to grieve.
An anniversary without 
cards or flowers 
to be borne with
sadness.

Grief is fluid,
ever changing;
Deep, stagnant
and opaque,
then crystal clear
and moving forwards.

Grief is ever present.
On the surface I am
whole, complete,
but I have
changed and 
my heart is heavy.

Grief is fluid,
ever present,
ever changing.





A chronological look at Diagnosis Day:
Eilidh Grace
1 year
2 years
Three years on & Far better things ahead
Warrior Mum




Tuesday, May 26, 2015

Chance Meeting






A couple spoke to Eilidh today.
They had watched her whizz round and around.
"What a fabulous chair you have!"
A silent grin spread across her face.
"And it goes up and down!"
She looked so cute and coy.
"Our grandson has Duchenne," they said.
"Eilidh has spinal muscular atrophy.  It's a neuromuscular condition just like Duchenne."

We got talking and I shared the time we moved from buggy to wheelchair and how suddenly, as a family, we became so conspicuous with the reality of Eilidh's disability visible to one and all. Their family had experienced something similar too.

I asked how long he had been diagnosed.
"A little over a year I think. Maybe..."
(Early days; such early, tender, raw days.)
I tried to reassure them, "The pain does ease with time.  It never goes away, but it eases. Tomorrow is our five year anniversary.  Our children bring joy to our lives, no matter the diagnosis."

I talked of my blog, my work with MDUK.
"Does the charity cover Duchenne? I don't know if they've been in contact with them. I can ask, but sometimes it's like walking on eggshells..." 
(Yes, it can be, but it's better to talk...)  
"Do you have a card we can have?"

A full throttle whizz around; a cheeky little girl in her wheelchair. A couple watching, thinking of their grandson, reaching out. I hope they left a little more hopeful.  I hope they'll get in touch.




Monday, May 25, 2015

Unmet Expectations



"Blessed is he who expects nothing, 
for he shall never be disappointed."
Alexander Pope



We set our goals and expectations high, out of reach, only to be let down on occasion: we grow to be disappointed, allowing bitterness to embalm our souls.  

I have been told recently that disappointment can lead to depression; by expecting too much we can only ever be disappointed and this over time, through repeated disappointments, can lead to feelings of frustration, resentment, and sadness. Disappointment forces us to face reality. 

It is, I feel,  difficult not to have any expectations at all; we expect of others the same humanity we extend to them - time, love, compassion, generosity, sympathy and tolerance. To expect nothing would remove us from the very essence of what it is to be human - it would be a very lonely place, devoid of interaction, denuded of soul, bereft of hopes and dreams
.  
Over time my expectations of what life has to offer have changed.  Despite these low expectations I am still, from time to time, as I perceive, disappointed, alone, isolated, overwhelmed and struggling.  I am impotent and afraid, believing that I deserve better, but forever falling short of this goal.

It is often those we hold closest to our hearts that disappoint the most, unable to give as much as we desire and need because time and energy are depleted: life is, after all, busy, constant and unforgiving.  It saddens me to think that people don't have more room in their lives but I don’t know how to change it. 

"Reach out," 
I hear my soul say, but it’s not that easy.  
"Speak up." 
But my voice is quiet.  
"Speak quietly 
and gently 
and often…" 

Someone will hear your call, your plight will be answered; expectations will still go unmet, no matter how low they are, but at least they don't go unrealised.

How we deal with disappointment determines how we live, how we prevent false beliefs from taking hold, how we stop the fall into a dark abyss. If we are lucky, disappointment allows us to look at ourselves and others, resolving what is important to us and what isn't; growing to value all that we have. This soul searching and reflection allows us to grow further, gaining wisdom and insight, finding "compensation in every disappointment", returning once more to a place of gratitude.

But in that moment, when an expectation goes unmet, it's OK to feel that disappointment.







Friday, May 01, 2015

A hint to who I am









".. while you are thinking about what makes you you, from all the things that you are: a wife, a mummy, a doctor, a carer, a write, and a fundraiser and advocate - and I could go on - I thought I'd tell you who you are to me.

You are the most amazing friend.

kind, caring, compassionate, supportive, a great listener, and you always know what to say to help.  And (you are) always there.  These - and so much more - are some of the things that make you the beautiful person and friend that you are..."







Thursday, April 23, 2015

Finding another way








Chapter I

I walk down the street.
There is a deep hole in the sidewalk
I fall in.
I am lost … I am helpless.
It isn’t my fault.
It takes forever to find a way out.

Chapter II

I walk down the same street.
There is a deep hole in the sidewalk.
I pretend I don’t see it.
I fall in again.
I can’t believe I am in the same place.
But, it isn’t my fault.
It still takes a long time to get out.

Chapter III

I walk down the same street.
There is a deep hole in the sidewalk.
I see it is there.
I still fall in … it’s a habit … but,
my eyes are open.
I know where I am.
It is my fault.
I get out immediately.

Chapter IV

I walk down the same street.
There is a deep hole in the sidewalk.
I walk around it.

Chapter V
I walk down another street.


“There’s A Hole In My Sidewalk: Autobiography In Five Short Chapters” 
Portia Nelson