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


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.

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


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.

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...


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."