99% of the time I am a Pollyanna - in fact my ability to see the positive in every situation is irritating even to me at times
However for the remaining 1% of the time I want to strangle Pollyanna, she can take a running jump, because really at times what is there to be glad about?
We parents of children who were born to be different in some way are always being told we are amazing, we are so strong, we are asked how we cope, we are told that you couldn't do what we do - well guess what? Sometimes we want to turn around and instead of smiling angelically and saying something like "well you just have to get on with it, they are my child no matter what" we want to tell you "it sucks, I hate it and quite frankly I want to run away from all this crap!"
Because it is rubbish at times, the times when you don't see us. the times when in the middle of the night I am struggling with my increasingly myopic vision to read whether I have a bottle of ketamine or morphine in my hand, working out which would work best as my child screams in agony.
Or when you've just changed the bed for the millionth time and then her stoma bag leaks all over it
Or when she hits you as you lean forward to kiss her goodnight because the seizure activity going on in her brain has made her confused
Or when she knows she is not well and she tells you "stay home" when she knows you are considering calling an ambulance
Or when her catheter drops out in the middle of Marks and Spencer food hall
Or when your other children are on the receiving end of your stress and don't deserve to be shouted at for the smallest of misdemeanours
Or the nurse agency messes up the care rota so by day three of being awake most of the night you are incapable of stringing a sentence together let alone care for four children
There are days when the Glad Game just does not work for me. How can I be glad when my work load just goes up and up, when I see constant deterioration in my child's health, where her bedroom is looking more and more like a hospital room every day. When every hard won battle for independence and time off gets taken away by yet another medical curve ball.
This is the reality of life with a child like mine.
I have to let strangers into my home - constantly.
My life is on view to people who I barely know but now have a professional interest in knowing about me and my family (this is why I blog - it helps me manage the information flow)
I have to be nice to people I don't like
I have to be grateful, even when I don't feel it.
I battle with constant guilt that I have ruined my children's lives - yes I know all mothers battle with this but really my children have been through so much more than your average child, even your average sibling of a child with special needs.
I worry that I am going to make a mistake that will kill my child - for goodness sake I have no medical training, I have a degree in Social Anthropology and a Master's in Marketing - that is no qualification for accessing a central line, administering intravenous drugs, setting up drips, administering heavy duty pain relief and anti-seizure drugs - one wrong step, one miscalculation of a dose or misreading of a bottle label is all it takes....
I worry about the future - as in tomorrow as well as next week, next year and the next 10 years. We weren't supposed to get to this point .
I worry that I am not happy enough.
I worry that I am too happy and not aware of the reality of my life.
I dare not think about the reality of my life - it scares me so much.
I envy parents whose children have less complex needs than my daughter. How crazy is this when you begin to wish that she just had one thing, one system that needed care. Or that things could start to improve and be fixed instead of the constant deterioration. I guess my daughter's complexity can be measured in the number of facebook support groups I am now a member of; Costello Syndrome, Intestinal Pseudo Obstruction, Mitrofanoff support, epilepsy, reflux, TPN.....
I want to scream - just give me the TPN dependency but why the learning disability too and whose idea was it to throw seizures into the mix??????
When I go into shops and people ask me "how was your day?" I nod and say fine thanks, I want to say "you just don't want to know, it will make you feel so depressed"
We got away last weekend - thanks as always to our wonderful hospice and an extensive investment of time going through care plans and handovers, we got to do the thing we love and go to Glastonbury Music Festival. But for me it was never going to be a complete escape - as I trudged across the fields from our camper van to go and see a band I had been looking forward to hearing I was busy texting, arranging for a hospice nurse to get access to our house via our neighbour to pick up a a piece of medical equipment. Then I was agreeing the plans for a revised hoisting system for Daisy's room as the original specification was wrong - all of this while in the middle of a field at a music festival. So was I surprised when a security guard approached me and asked if I had taken any illegal substances. I wish! That's the powerful effect of parenting a child with special needs, the ability to look like you are off your head on drugs when you actually aren't off your head on drugs...
On the really bad days (don't worry mum, they are rare but they are there), I remember the words of a mum I met in the parent's room in Great Ormond Street - "I am smiling but inside my heart is dead"
If you know someone like me with a child with complex needs can you bear these things in mind please:-
Sometimes we really want to feel sorry for ourselves and wallow in it for a bit
We are not saints
We don't always enjoy this
We don't have to be happy all the time
Sometimes we are moody - it's nothing you have done wrong. We also swear, a lot - well I do, I have few vices left to me, I can't drink because I need to be focused, I don't smoke or do drugs, so swearing is my particular vice.
We are envious of you - you can be spontaneous, you don't have to remortgage your house to get a babysitter so that you can sit and have an argument with your husband in a pub
You have very high odds that your children will grow up healthy, hit all their milestones and leave home - I'm still changing nappies and singing along to the theme tune of Fireman Sam - I'm 45
We don't want to talk about our children all the time, we are more than parents of children with Special Needs (again, another reason why I blog and use social media, sometimes I'm sick of talking about it all, quite frankly its all very depressing)
Sometimes we find it hard to listen to your stories of holidays and nights out when we would love the chance just be on our own for 24 hours.
Sometimes we lose at the Glad Game
But because we have learnt to be strong and because we have no other choice it's only for 1% of the time.
Thank you for allowing me to get this off my chest. Normal Pollyanna service will resume in the next post.
|At Glastonbury - my happy place|