The Doctors' Waiting Room: The contribution our daughter makes

Dr Natty is here to help

Today we spent a good 40 minutes in the waiting room of our local Doctors' Surgery. Nothing unusual in that with our Natty. 

We're talking low-grade 'poorly'. Off-colour, off school, off her food. But after the out-of-the-blue 'nasty episode' that sent Mummy and Daddy 'off the scale' with worry, and her into hospital 2 weeks ago, we were covering all bases.

I digress.

I sat, mentally noting the events that took place in the waiting room today. No more out of the ordinary than on any other of our gazillion visits, but perhaps because we were there a little longer, and perhaps because being a blogger changes the way you view the ordinary, I thought I'd write to you all about it...

My Superheroes for #LDWeek13

superhero  (ˈsuːpəˌhɪərəʊ)
— n  , pl -roes
	characters with superhuman abilities or magical powers, wearing a distinctive costume, and fighting against evil

Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question; who is your real-life superhero? 
I was honoured that Mencap posed this question to me, and here is my answer, in the form of a poem (bear with me, poetry is not one of my superpowers).

Disguised in scrubs and gloves
a uniform of blue or white
or none at all
our superhero morphs

Her face smiles kindly
a wisdom that has seen, 
or with enthusiastic youth
he embraces our fears

'Go and love her'
'An ambassador you will be'
'She'll teach you'
'We will be here'
'You learn how strong you are when there is no other way'

The superhero stops us falling
drowning
going under,
saves a tiny life worth living

He fixes a heart
Helps you walk, talk, see, hear
Makes tea and listens
Congratulates, helps, believes

She paves the way with her example
a role model, 
a patient visionary
the tireless ambassador

Barriers are smashed as
Superheroes include, encourage
proudly teach and expect
they know no stereotype 

Transported into school
hospital, here at home
or online
our hero is there

She wields a gift, an invite
patiently shows flashcards
a scalpel, keyboard or camera
his weapon of choice

Her whistle blows loudly 
arch villains he outs
gently melting our hearts
future change from the start

For our superhero is one
is many
is you

Full of heart, so selfless and true

When I was asked to write about my superhero I wondered where on earth to start. Would I write about  our daughters who have taught us so much? Mia the thoughtful, gentle soul, with a keen sense of right and wrong. A feisty know-it-all, equestrian and dance queen? Natty who melts hearts wherever she goes, and demands a rethink from all she meets about what Down's Syndrome means today. A model fighting for ad inclusion, a loving daughter, an annoying sibling, a team player, a valuable classmate?

Or my unfaltering husband who simply announced that Natty was our daughter and that she would be fine as he proudly held her aloft on the day that she was born? Our wider family who swooped in to help?

The wise midwife who shook me out of my self-pity, the breast feeding support, the trainee doctor who smiled and told us we would be ambassadors for children like Natty when she was 3 days old. I wish I could track him down and tell him how motivating his words were.

But I couldn't miss out the surgeons and doctors that had saved Natty's life. Or the neonatal nurses that cared for her, and nurtured our bond in the early days. The emergency middle of the night medical strangers, the familiar staff on the paediatric wards. Where would we be now without people like that?

And what about the physio and SALT and portage worker who lifted me with tea and encouragement each week in the early difficult days as they gently encouraged Natty to reach her potential.

The teachers and TAs at Pre-school and school who embraced different methods of teaching, who believed in Natty's abilities and spent hours working out what they were and how to nurture them.

To everyone who has seen my worry, tears, frustrations and listened. To those who offered childcare, tea, hugs, meals, advice, resources, some of whom I have never met in the invaluable online support network.

The charities we couldn't have done without, both those who have provided support directly relevent to our family, and those who work for a safer better future for our children.

The fellow ambassadors, the writer, the photographers, the campaigners, the politicians who believe?

And finally the wonderful adults I have met along this journey who have a learning disability. They light the way for us, make our lives more colourful, show us what is possible. They are the role models for our children.

So, a mix of them all is had to be, and my poem depicts a superhero made up of all these people. A multi-facetted superhuman, whose costume and appearance might change but who influence remains constant.

Thank you to our super heroes this Learning Disability Week.
Join in the hashtag #LDWeek13 on Twitter and link up your posts their or in the linky below.

You can follow our exploits @DownsSideUp as well.

Reader's Story: Sandy Lawrence

Today's story is from a lady who is a great friend of mine, she also happens to be the chair of the Cornwall Down's Syndrome Support Group as well as being on the board of the DSA. She is a force to be reckoned with and certainly someone you can count on for loyal support if you find yourself in a difficult situation. I think it took me over a year to contact her in the beginning...

Matthew in Disneyland

I am not a natural writer and have started this piece so many times.  I guess what I really want to say has to come from the heart so here goes.

I came to motherhood relatively late and went back to work 6 weeks after my first child was born. It had taken me 5 yrs to conceive and carry my baby to full term so it was a bit of a surprise when I fell pregnant with Matthew when James was just 5 months old.

I refused all testing as I had had 3 miscarriages and thought no more about the possibility of having a child with downs syndrome.  Matthew was born on 2^nd June by elective c-section and I was told almost immediately that they thought he had downs syndrome. I was overwhelmed with sadness especially for the medics whom I had grown to know and for whom I thought it must have been so difficult for them to tell us.

I also remember being so sad that I thought I had ruined James’ life and that he would be forever saddled with his disabled brother.

Matthew had a very poor start to life health wise and stopped breathing at 10 days old.  He was put on life support and for a couple of days we sat by his cot just willing him to live.  I made so many pacts with God that it didn’t matter that he had downs syndrome I just wanted my baby to live. 

He pulled through and we got on with our new life.  I gave up work and we settled into the inevitable round of appointments that you will have heard about from other writers.  At six months Matthew had another huge setback when he developed infantile epilepsy.  Although he no longer has fits, the impact of this early setback has had a lasting and profound effect on him, affecting his ability to speak.

Through Matthew I have met some amazing people, some of whom I now consider to be life long friends. What is most fascinating is to watch the journey that parents take.  To see them blossom into everything that their child needs and so much more.  To see the capacity that parents like Hayley have, not just to be an incredible parent to their child with downs syndrome and their other children, but also be the crutch that other parents can lean on when they need to. Many of us would not have thought that we had this in us and yet when tested almost beyond what we can endure, time and time again we see parents of children with all sorts of additional need go above and beyond to support other parents on their own journey.

Hayley and I laugh now about the number of people who told her she should contact me in the early days after Natty was born, and those that asked me if they could give Hayley my phone number. I am so glad that when she was ready she did contact me.

I am often asked about the ups and downs of raising a child with downs syndrome and I explain it like this: It is the most exasperating, emotional, difficult, amazing wonderful thing that I have ever done, and I would not change it for the world.