Tuesday, September 18, 2012

My Glass Child - Part I

I worry about N.
I’ve been told that she’s “a great girl”, “she’s just fabulous” and “she’ll be fine
But still I worry
You’re an excellent mummy, you can’t do any more for her
But I worry, I do.
She is my daughter:
yes, she is 5;
yes, she’s just started at school;
yes, it’s probably "just a stage"; 
but she’s my daughter and I’m worried about her.

N is kind and gentle and empathic.  She takes on the role of caretaker and nurturer easily and naturally, but she is crying out to me, she is telling me that she needs time, that she needs love and that she needs me.
I love her unconditionally and wholeheartedly, but does she know that? 
I need to make it clear. 
It’s not as simple as “I love you”. 
It's not as easy as a cuddle and a kiss.
N needs to know that she is worth more than the sum of herself, that her value is not based on how good she is or how well she sleeps or how caring she is.

Perhaps this is normal and i'm overanalysing the situation; perhaps N is just a normal 5 year old.  But then again, perhaps it’s not normal and she is struggling, crying out for help and I’m looking through her…
Have you heard of a glass child? I thought that these children were fragile and breakable, but they are instead strong but sometimes invisible. They are the sisters and brothers of children who have special needs, requiring ongoing care and support above and beyond those of their peers, above and beyond “normal” parenting.


There are times when I can hear myself saying :
“not now, n, I’m dressing e"
“not now, I’m helping e"
"not now, I'm changing e"
“get out of the way, I’m trying to lift her"
“no, you can’t have a cuddle at the moment"
“please be good for mummy, i'm tired"

There are times when I see right through N. N is one of thousands of children with siblings with special needs, all with the potential of being glass children. I am so consumed by e’s needs that I see through her beautiful older sister, whose needs seem insignificant in comparison
This may well be "just a phase" but I cannot take N's emotional health for granted. Her emotions are strong and crazy and out of control and on top of her own, she feels ours too. I need to remember that she is a child; she is only 5, she does not have the same coping mechanisms as I do as an adult.  I need to read her signs, she is my daughter and I know her best; I just have to have confidence in my parenting.

N craves time alone with me: time without eilidh, time to be herself.
She needs love and she needs attention; I need to reach out to her with arms wide open and embrace her with all my might.

Hold tight, N, mummy's here...



Monday, September 17, 2012

At Home Farm

Getting down and dirty on the tractor,
Having fun and lots of laughter.

photograph by the
Lady of Camptoun

A Letter to Estella's Parents

to Estella's dear mummy and daddy


I have thought of you every day since I heard about Estella’s story and on so many occasions have wanted to contact you with my condolences, prayers, thoughts and love.  I have wanted to contact you because, even though you are strangers, we share a common ground – we live with SMA. 
We grieve in different ways for children who are lost.    Estella lost her life because of SMA and the pain that you must feel is surely immeasurable.  As a parent, you have so many hopes, expectations and dreams for your unborn child: as you nurture their growing bodies within your own, you dream of their future and your heart swells with expectant love.  Your child is born and you immediately know unbounding magnificent unconditional love and your future is a “happily ever after” as a family.  Sometime later, and I wouldn’t wish this on anyone, a moment comes when you realise that your perfect little baby isn’t quite perfect - because parents are always right! – and doubt and worry fills your mind.  You see doctors and consultants and then one day you hear the words that will turn your world upside down “your daughter has spinal muscular atrophy”.  For us that was two years ago and as a result Eilidh will live a very different life from the one we imagined for her.
We live each day with SMA “normally”, carrying our burdens differently and grieving for very different lives for our children; but we survive and carry on, taking each day as it comes. You live with the death of Estella and the pain and loss that that brings.  Your “normal” is your normal.  We, on the other hand, care and live every day with the physical and emotional demands of having a child with SMA and the difficulties it brings to family life.  This is our “normal”.  Our burdens are in no way the same and I hope that you don’t feel that I am belittling yours in any way because death is surely the greatest of all losses.  We learn and grow and we carry our burdens as we can.  We do what we can to lighten our burdens.
Our children guide us and teach us about life with SMA.    They inspire us to live purposefully, full of hope and grace, passion and determination.  I know that you are not superheroes (nor am I!); I know that you are doing what any parent would do to make a difference; to never let their child be forgotten.  I know that you are parents who love wholeheartedly, to the stars and moon and back again, and who have suffered a loss so unimaginable.  But from this loss something remarkable is happening and you have begun to tackle SMA head on:  you are fighting for our children and thousands of others too and I am proud of the work that you are doing to spread awareness of SMA. 
I cannot begin to understand - nor do I want to consider that it is possible in my lifetime - what it must feel like to lose a child to SMA, just as I am sure that you would struggle a little to imagine our day to day, but we do have SMA in common and I am reaching out to say that I am so sorry to hear about Estella’s death, that you are doing a truly wonderful job and that I am here if I can help in anyway.
Good luck in London, I'll be with you in spirit...
My love, hope and prayers go out to you 
Now & Always


Wednesday, September 12, 2012

Better Late Than Never?

A letter has been sitting inside me more or less since Eilidh's diagnosis, but it's never made it to paper.  I have thought about it often, pondering what can be done, but the words have never been penned.  I regret that it has taken so long to write and longer to deliver to the intended recipient, but living the day-to-day with SMA is my priority.  Perhaps this isn't my role - my "fight" - within the SMA community: there are others who can have the passion, dedication and time to devote to the cause, but I felt that I needed to make a contribution, however small it may be.

The letter has made it to paper now - just last night - and will wing its way to Number 10 today: just to give them a "heads up" - although I wonder if anyone will read it - I sent an email too (just for good measure!), introducing myself and our story, hoping that someone will take the time to read the letter when it arrives.
"I am a wife, a mother and a doctor; I am also carer to my daughter Eilidh who has spinal muscular atrophy grade 2.  She teaches me about living with SMA..."
This, perhaps, is not my "fight" but I hope that it will support someone else's fight, someone who lost their precious little star to SMA, and hope is a wonderful thing to hold on to.

Saturday, September 01, 2012

The WAV...

She's big and black and mean.
All she is missing is the iconic red stripe along her side;
but none-the-less,
we are the E-Team.

She arrived after a long wait and we wondered if she would be worth it, but she is! She most definitely is!  She has made life so much more accessible with loading, lifting and transfers made easier (but not without some difficulty), she has a wicked sound system, and the girls LOVE her!

So thank you, first and foremost to Motability and Whizzy Wheels for enabling this WAV to come into our lives - she's made a difference to our family, a real, real difference.  Thank you also to the staff at Bristol Street Versa who were very helpful throughout the process from test drive to delivery - thank you for making this a reality.
I didn't think that she would, but our big, black, mean WAV has improved our lives significantly.  We just need to name her now...
And on that note I'll leave you with an iconic tune.