Wednesday, 22 June 2011

You just do

THIS POST IS DEDICATED TO THE MANY FABULOUS PARENTS OF SPECIAL NEEDS CHILDREN OUT THERE.I RESPECT WHAT YOU ALL DO SO VERY MUCH.

Once again today I have been asked the question 'How do you cope?'

When I'm asked this question I usually just smile,slightly embarassed and lost for words and them quickly move the topic of converataion to something else.
Occasionally I have been daring enough to say 'you just do and add that the person asking the question would do just the same' but most of the time I say nothing.

Once,just once recently the truth slipped out and I was met by a horrified and very disapproving look


So here, as much for my own benefit as to answer the many people over the years who have asked this question is the answer '' BECAUSE I DONT HAVE A CHOICE''

This isnt meant to sound cold or resentful,self-pitying or any of the many things that I am sure have crept into the minds of some people. It is simply the truth.They are my children who bless me daily and this is the' hand we've been dealt' for want of a better way of putting it.
There are many many wonderful special needs parents who I am sure will understand and relate to exactly that. We do what we do. We find our own coping mechanisms.

In more detail...Its hard. The repeated hospital trips are isolating. My coping mechanism has been the same each time.
I shut down. Simply that. I have the ability to take my beautiful precious fantastic little girl and place her on the hard cold table of the theatre, reassure her when she cries panic stricken as they anaesthatise her. Tell her over and over quite calmly that I love her and turn to walk away.I have mastered the art of smiling and making small talk to the anaesthetic doctors and nurses as she struggles in my arms even to look as they bend over my little one who suddenly looks oh so small on that big bed and place her dummy and iggle piggle blanket beside her before walking away.
Am I hard? Am I un-natural?...maybe, I dont know,I hope not.I think I am just well trained.
When every fibre of my being whats to turn,pick her up and run with her holding her tightly in my arms I dont...I walk away....and most of all I NEVER let myself cry.

If I feel tears rebelliously pricking at my eyes in these situations I have learnt to dig my nails hard into the palms of my hands to stop them, or bite my lip hard until I get to the safety of the parents toilets where I cant silently scream..and breathe...just not cry. In hospital I never cry.

I cope by praying,hoping and when there have been times that hope seems gone I simply hang on even when my faith has been in shreds I have to hold on.

It hurts everyone.When we are in hospital for weeks my children go from saying 'I miss you' and 'when will you come home' to being told to say hello to me and haiving stunted mono-syllabic conversations. I dont have words to comfort them and they...cope.
The last time we were in I had a phonecall from someone who told me how upset my children were without us....being faced with this reality which yes...I already knew was.....well there are just no words.I want to be able to split myself into a number of different pieces to be what each of my children needs at that time but its not possible. My children 'the left behind' ones are so brave but I really do wish they didnt have to be.
I screamed at God for the unfairness of it all and yes I did the why me? why us? but the reality is why NOT me?? why NOT us?
David visits when he can but its hard for him with us being so far away...he copes.too well at times and we sit both of us by her bed making small talk and talking about mundane things both carefully skirting round the main issue..the littel girl asleep between us.

We come home and everyone readjusts...mostly but not quite...into the every day routines again.However I am reminded of the fragility of it all when we announce we need to go to sheffield for an appointment and the youngest ones ask if we will be coming home or if they need to go to grannys for dinner.

I wish so I could 'make it all better'..that is after all what mums are supposed to do.But the reality is I can't. The only thing I can do is love them with all my heart, to make as many happy memories with them as I can...all of us together.To give them sweet glimpses of  'normality' as we did with the Donkey Party recently.


And so with another big Op looming the answer is still the same..I cope because I have to..we all have to...I cope because I love them.

5 comments:

An Imperfect Momma said...

Wow. I'm crying here. God bless ya, I dont know how I would cope. But you're right...you just do cause you have to.

Jaz said...

God bless your honesty, I'm not a special needs parent but I have a complex (to a certain extent) medical needs. When asked how I cope I say "because there isn't any other option".
Continuing to pray for you
Jasmine x

abrandnewstartagain said...

Caroline, being a Mummy of a child with complex needs is a struggle for everyone and from what I hear you do a great job!
I'm a sister of a brother with special needs and watch My Mum and Dad spend countless weeks sometimes months in hospital, I am grown up so can understand more about what is going on, and I have to say that's not always been a good thing.
You are right...you do because you have to do, after all would anyone really want to take your place?
Lots of love Karen xxxxx

altonwoods said...

I'm sorry but I think you deserve a much better explanation than,

"because you have to"

Maybe something like...

It mostly takes every bit of courage I have,everyday,the majority of which I never knew I had!In the end I'm just like you,I have good days and bad and I struggle but even on my worst day I've never felt as though I didn't receive ten fold back in return from them!My kids are the brave ones,they inspire me!

Perhaps you should ask them.

TheMadHouse said...

I really don't know what to say. All this kind of puts my pity party post in perspective tonight. Life goes on as there is no other choice, life isnt fair and ny heart goes out to you