Tuesday, July 02, 2013

Sometimes Pollyanna can take a hike

Pollyanna is a character from a children's book, her name has become a popular term for someone with an optimistic outlook on life.  In the book Pollyanna gets through her misfortunes by playing the "Glad Game" - always finding the positive in everything in life and finding the glad in every situation.


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








16 comments:

Stephanie Nimmo said...

Love you honey, I get the statement "you are so strong". I'm not I just have no choice. We have to go on.

I admire you honey you are one amazing lady.

Stephanie Nimmo said...

the time Pollyanna could not play the glad game prompted the grownups to rally round in shock. Thinking of you.

Stephanie Nimmo said...

It's totally different situation, but I get the 'you're so strong, inspirational, blah blah'. I think people use it as a way of trying to be supportive, when they're completely lost with the situation, and possibly even a bit embarrassed, and are trying desperately to say something. I have a complex medical situation, and it's hard enough looking after myself, without having to worry about caring for other people. I'm totally with you on the swearing, nearest I get to alcohol is when opening clinell wipes, or my port being unblocked ;-)

Your blog is your place, your space, to say what you really want to say. You don't have to be Pollyanna on here ever. We all need the space to stomp and swear and say how unfair it is, because you know what, it is damn unfair.

Xx

Stephanie Nimmo said...

I think a lot of people are overwhelmed just thinking about what you do. They don't know what to say. I do wish you well, and can only imagine how frustrated you feel. You are welcome to ventwhenever you feel the need. Sending prayers to your family.

Stephanie Nimmo said...

This makes for very powerful reading and a very useful insight into a day in the life of someone with a child with complex needs. We see lots of these people on a daily basis but never get a real feel for what is going on for them truly. Pollyanna always felt a little too chirpy anyway!

Stephanie Nimmo said...

Hugs. No words can help and I have little knowledge of what you go through, but I do relate to the needing to wallow a bit every now and then feeling. Sometimes like sucks- and for you so much more than most other people. Hoping there are more Glastonbury days and similar in the near future for you, and remember however badly you think your kids miss out they will be more aware, sensitive, caring and self sufficient than every other teen on the planet. Because you are amazing 99% of the time. 1% you are human and should never beat yourself up over that. xx

Stephanie Nimmo said...

Thank you for speaking my heart... again! And mine are, I am all too aware, much less complex issues... The Glad Game works well a lot of the time, but there is a necessity in letting the pain have its voice as well. If we don't, it will rot us from the inside.
Your pain is real, and warranted. And I think it's important for us other SEN mums, but also the big wide world to witness that we are not strong, special or anything like that. We do what must be done, and because we love our children, we do it with a smile (as much as possible). "They" need to see the pain too...
All my love, as ever...

Stephanie Nimmo said...

Absolutely brilliant, you've spoken for so many of us xxx

Stephanie Nimmo said...

You have said everything so eloquently and captured exactly how I feel being the mother of a special needs child, albeit one VERY much less in need of the care your daughter requires. You carry on because you have to and not necessarily because you want to and I do get tired of hearing people tell me how strong I am and that I always seem so upbeat etc. I hope, despite the texting etc, that you managed to capture a little piece of 'normal' at Glastonbury and wish you well in your continuing jouney x

Stephanie Nimmo said...

I am one of those "lucky" mums, who only has one special need to deal with, and even with that you sometimes find yourself envying those parents who has children with problems that can be fixed, that the system knows, that have support groups...
I have no words of wisdom, no advice to give. Just a virtual hug.

Stephanie Nimmo said...

i really feel for you and i soooooooooo understand. i have a 9 yr old who is autistic, with PANDAS, her immune system is shot, and she had 14 specialist in 2 states. some day i also lose the glad game, but i put a smile on my face and continue. if i don't do it who will? we don't have the same issues that you do but we have many. best of luck and hang in there.

Stephanie Nimmo said...

Thank you to everyone for your kind comments, retweets and shares today - I always try and speak for all of us parents who lead a life which wasn't in the plan - I'm glad this post hit home for so many of you xxx

Stephanie Nimmo said...

I really really empathise

Stephanie Nimmo said...

A very powerful and moving post, I don't think I can say anything without sounding wrong, but I think you have shown me and all the others who do not have children with complex needs what life is really like.

Thinking of you, and as for the Glad Game, it's okay not to want to play it all the time.

Take Care X

Stephanie Nimmo said...

The most powerful post I have read in a while Steph. Much love H x

Stephanie Nimmo said...

Hello. This is the first time I've visited your blog (found it via Hayley's SEN Britmums round-up). For another wanna-be (but I get the impression I fail more often) Pollyanna to another, I just wanted to say I get it. I totally get it. Thank you for a great read and I look forward to coming back to your blog soon.