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 
lifting us high,
raising us above the 
depths of our
I hold these
words, these
returning to them often,
feeling the
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

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..."