Thursday, June 21, 2012


So... I’m a carer. A working carer. A mummy. A wife. A doctor.
I am a sometime daughter, sister, niece, cousin and friend, caught up in the day to day business of a seemingly perfectly imperfect life.

But when an earth am I me?

Who is me?

I found her after she became a couple, rediscovered her after she had children, but I have lost her since she became a carer and I really don’t know where she is now?  I don’t know where to look; I don’t know where she is hiding.

I think that it is rather common for carers to lose their identity, caught up in the life of the one they are caring for, forgetting to care for themselves. The In Sickness & In Health Report demonstrates this: our physical and mental well-being is our last priority.

Looking back through my diary, I found this entry from last June, my priorities as at 14.15 on 9th June:

What a moment of insight and now, looking back, I haven’t moved on from that position of lowly importance.  I knew then that I wasn’t looking after myself and now I’m a year further down the line, a year more tired, a year more frazzled.

She found a deeper hiding place.  She doesn’t know how to be found.

This year the first sign of how lost I was feeling was when I read a post by Is there a Plan B?  It was a simple post about the small stuff; a list of the small things she loves and knows to be important.  It made me sad, the post emphasising that I no longer knew what I loved or enjoyed, that I no longer took notice of the small stuff that I was once so grateful for.  In fact, I felt that I no longer knew me.  Sitting down and taking the time to think about the things I loved, the simple things which bring me joy and smiles and laughs, the simple things for which I am grateful, I struggled.  My husband and my girls – obvious but so, so true.  And then…

She no longer knows where to look for joy.

It was to mark the start of a rather low period for me as the realisation that my depression had returned hit me.  I restarted my anti-depressant, knowing pragmatically that although it wasn’t going to change my life, that they would allow me to cope better with my day to day; that is exactly what they have done, thankfully with little in the way of side effects.  With time,  improved clarity and a little insight I  now know that I am neglecting myself, that I have lost sight of who I am, but equally, that I do have the ability to help myself.

She lights a flare, looking to be found.

I know what I need to do so that I can in turn care for my daugter; I need to care for myself but that's easier said than done.  I know that I should sleep more - but Eilidh needs turning through the night; I should eat more healthily and exercise - but I have no motivation; I should spend time with friends - but feel guilty that I'm not at home.  I know what I should be doing, but it's so difficult because it feels selfish and yet if I don't look after myself, who will?

The mirror marks the spot.

A poem was read to me on Tuesday and as I listened, the silent tears fell.  I know where to look for her now - she is within me and always has been, but she needs time, love and gentle nurturing and only I can give her that.

Love After Love
The time will come
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other's welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

Derek Walcott

Tuesday, June 19, 2012

1 in 6.4 million

This week is Carer's Week, did you know that?  I didn't until today when I walked into work and there were posters and leaflets everywhere advertising the fact and signposting the way to support.  I was genuinely startled to learn that there are approximately 6.4 million carers in the UK today and approximately half of those combine work with caring responsibilities: I am one of those three million.  I look after my disabled daughter with my husband and  I also work .

I never expected to become a carer, nor when I did did I realise what an impact this would have on my physical and mental well being.  My needs are second to my child's; actually my needs are my lowest priority...

An on line survey was undertaken by nearly 3400 carers looking at the impact of caring on the carer's health and well-being.  The results were released in a report "In Sickness and Health" and demonstrate that caring has a negative impact on their physical (83%) and mental health (87%), with 57% experiencing mental illness and 36% having sustained an injury, for example back pain, as a result of caring.

It got me thinking:

I am 1 of 6.4 million carers.
I am 1 in 3 million working carers.
I am within the 57%.
I can relate to the 36%.
I am not alone.

I care and do so because I love my daughter, because it matters and is important and is necessary.  I can't and won't stop caring for her, no matter what, no matter the cost to myself because of the love I have for her: she is my flesh and blood.   Carers care for those they love, pure and simple, and that is where the Government have us over a barrel when it comes to cuts in services- we will not argue, we will not strike, we will carry on regardless until we can carry on no more.  But who will care for us then, when we are spent and done?  By then it will be too late; carers need cared for too, in the here and now, physically, mentally, spiritually and socio-economically.  Where does this start?  The research is clear - by looking after ourselves, the carers.

Are you a carer?
Who cares for you?
What simple thing would make a difference to your life?
Do you know where to find help and support?
If you are struggling, think about talking to your GP - they could be holding your lifeline.

Monday, June 18, 2012

2 years

Grief is a horrible thing; the pain and sorrow that you experience is so deep and consuming.  We often think of grief in terms of death but grief is not just about the end of a life; we grieve over the loss of a loved one, the end of a relationship, the end of dreams and expectations and hope.  For me grief relates to the diagnosis of my daughter, my Eilidh, with a genetic condition which means that she is unable to walk, a condition which may mean that she doesn't live to see her adulthood.  I grieve for the baby, the toddler, the child, the teenager and the adult that Eilidh could have been before SMA.  I grieve for the broken dreams of my child, my family, myself.  I grieve for my normal life pre-SMA.

This form of grief should not be belittled – and I might have done just that had I never experienced it myself.  I have been told that grieving in such circumstances is normal, but complex and to me it is real and insurmountable and feels at times to be never ending.  And I know that I am not alone - other parents of children with special needs feel it too...

A little over two years has passed since Eilidh's diagnosis.  (Where has the time gone?  Has it really been that long, for there are times when the enormity of Eilidh's diagnosis is as painful as it was that day in May...)  The diagnosis (damn you, SMA! DAMN YOU!)  remains unchanged, Eilidh knows no different (for the moment at least...) and my broken heart is (I think) healing...  A profound fault line still remains, a weakness in my heart which could fracture with little warning, with little or no provocation.  I teeter above a chasm of grief, not moving through the chronological stages of denial, anger, bargaining, depression and acceptance but flitting between them as a knight would move.

My feelings towards this disease - this god damn awful disease - change frequently and can do so as the minute changes or as the hour passes.  A situation will demand or the experience command a reaction, an emotion, a feeling, and some days I am at the mercy of my emotions - on others, I carry on regardless, seemingly numb to my thoughts and feelings.  I get through the days any which way I can, present in the day - for there is really no other way to live when you have a child with special needs.  There is no right or wrong way, there is only my way.  There is no natural chronological order to my grief and by realising this I feel more free; I am no longer governed by my anger or frustration or wavering acceptance,  for what I am feeling is natural and, after all, it's only been two years...  Two years, I have been told, is nothing in terms of grief, but, in this case, living with a child with special needs, I sincerely doubt that there will be a return to normality with time, that acceptance will ever truly be reached.



Sunday, June 17, 2012


with love from
niamh & eilidh

we love you, daddy!

A Daddy's Love

"I'm gonna watch you shine
Gonna watch you grow
Gonna paint a sign
So you'll always know
As long as one and one is two
There could never be a father
Who loved his daughter more than I love you"

This is the love I know that D has for his daughters, for my girls, for Niamh & Eilidh.  This love proves him to be the perfect daddy, now and always.  As a result, I cannot love him more. 

Happy Father's Day, D! 


Wednesday, June 13, 2012


Bea is lying in intensive care. Unconscious and her breathing being assisted by a ventilator. She is resting as her body heals. I pray that she gets better, that she gets stronger, that she can soon be back to her cheeky, gorgeous, ice-cream loving self.  I ask that her mummy and daddy find the strength I know they have to sit and watch her overnight, knowing that they love her whole heartily and abundantly, but realising that, sometimes, love alone is not enough to heal.
You see, we know Bea.  She is the same age as Eilidh.  She has SMA II.  Bea became independent in a Panthera and graduated to doughnuts in a Snapdragon, too.  Tonight, for the first time in our seemingly parallel SMA journeys, I can not imagine what Andrew and Amy are going through and my heart aches for them. As I held Eilidh close, kissing her as she fell asleep, my thoughts and prayers were with Bea – be strong, Bea for SMA is a cruel disease but she does not define you.  Be strong.

Please keep Bea and her family in your thoughts and prayers tonight, pray that she gets better and that her family stay strong.