On a scale of one to ten…..

It’s time to step away from the unfolding story of a wobbly girl and her mildly eccentric brother and talk a bit about feelings.

I am a literary snob and have always hated greeting cards poems. Unfortunately what your midwife fails to tell you is that when you become a mother, they replace the rational part of your brain with mush.

I had already spent my pre-Pearl motherhood opening trite birthday cards, reading the previously despised verses holding them to my tender bosom, while sobbing “so true” If these emotions run riot when you have a “typical” child all I can say to you Extra Special Parents embarking on this journey is “if you have tears prepare to shed them now”

Three years into our journey, during a very low period which  characteristically involved a fight with the authorities to give our daughter equality of opportunity with her peers, you find me,  sitting quietly on the sofa,  having put down the phone on the latest argument. Shaking slightly and near to tears I hear an awful raw keening sound.  This sounds like an animal, caught in a trap, in pain, who had given up hope of rescue. As I begin to rock gently I realise the noise is me.I have honestly never heard a sound like it and as I sit, completely and horribly in the moment, I take apart every single fight, and pain, and triumph and struggle that my precious small girl and I had endured. Clearly I had been fighting for her so hard, and working so tirelessly to remain positive that I had squashed all this excruciating emotion down, down, down and there it all suddenly was.

As experiences go this is most definitely not one I would recommend- and why on earth would I want to share it with you? I have experienced emotions while embracing our new normal (or as a friend and I always say “living the dream”) which are dark,disturbing and hard to admit to. If on your parenting journey you have experienced some of these, please know you are not alone.

Pearl was our ‘extra’. Mr PJ has always wanted a huge family, but then to be fair he doesn’t have to give birth. We had fun practicing making Pearl, but after a year nothing had happened and a more permanent job prospect was looming. I was just about to suggest we stopped trying and I went back to work when I fell pregnant.

When Pearl arrived and it became clear she was entirely herself, along with the fear and panic, I had a few questions. Why did we have her?  We had two children already, I could have worked-what were we thinking?  What was Mr PJ thinking?

I was a Christian, was this my destiny? Would Pearl be healed?  Did God mean this to happen?  Were we being taught something?  Was there a God, or was everything totally random?

I was embarrassed. Embarrassed to have ‘failed’ by giving birth to something that wasn’t ‘perfect’.

I was worried about the future. What would people say?  How would they treat Pearl? Would she talk, walk, feed herself, be toilet trained?

I was uncomfortable, I did not want to be a Special Needs mum. I wasn’t the type. I was the helper, not the helped.

I was regularly hit by waves of despair so intense I felt they would surely wash me away.

Mainly I felt guilty, guilty for feeling all these feelings. Guilty for making this child who was finding the simplest things so difficult, and guilty for changing the family dynamic so dramatically (oh how I underestimated my wonderful family)

I was completely awash with emotion.

 

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At this point nobody asked Mr PJ and myself how we were feeling.

No professionals checked,they were too busy diagnosing.

No friends asked , I think they were worried they wouldn’t cope with the answer.

Several people told us how we felt.

“What a good job you’re a Speech Therapist, you’ll know what to do’

“God only gives special children to special people.”

“Consider it pure joy brothers when you face trials of any kind” Pure joy!  Thanks St. Paul-I’ll give it my best shot.

An older woman of my acquaintance  said “But you don’t regret having her do you?” Never, NEVER ask a parent struggling in the early days with therapists, appointments, tests, NEVER ask them this question.  You don’t want to know the answer and actually neither do they.

“I expect you’re grieving the child you didn’t have?”  No actually, I was grieving the difficulties my beautiful beloved Pearl was facing to do the simplest of things, and the amount of horrid appointments and needles and knives she was facing.

So you discover me overwhelmed by feelings of every kind, bombarded by the opinions of the well meaning, and exhausted by sleepless nights and fights with the authorities. Unable to share these emotions with my amazing best friend/husband/partner in crime- they were too dark and dreadful- and fighting smilingly on. And that is how I came to find a keening animal inside me, and that is when I realised,that I had to be honest, with myself at least, about the trials of those dark days.

With the benefit of nearly a decades hindsight, I can tell you these feelings come and go. Some disappear altogether to be replaced by something else. Life becomes more usual, and positive happy feelings come creeping back. From time to time, a form you fill in, or a look someone gives you, or another family sadness will surprise you into re-experiencing them all again.  When this happens people I have some advice. Don’t listen to the people who think you should have got over all that by now. Don’t try to do too much. Be kind to yourself. Remember, coffee, cake, wine , chocolate,comedy.  Whatever it takes.  Pick yourself up dust yourself off and…well you know the rest.

When Pearl and I are curled upon my bed at story time, or on the sofa with a biscuit; I often say “shall I tell you a story about you?” This child has the highest level of self esteem in the whole family. Of course she wants to hear this story-who wouldn’t?

Once upon a time there was a Mummy and a Daddy and The Glory and a Rab. Daddy looked around and said-“I just don’t think our family is finished yet” and then Mummy found out there was a baby growing in her tummy. One day Mummy said-I think this baby is going to be born, and went down stairs to the playroom-and what do you think happened next?Pearl was born and she was so beautiful, and we looked at her and we knew our family was complete. Pearl was what we had been waiting for.

And dear reader,we lived emotionally ever after.

Testing,testing…..

In which I resist searching for a diagnosis, and a small person resolutely refuses to be categorised.

Previously in The Wrong Kind of Snow….

Problems were denied, therapy was applied, and cunning and well articulated arguments held off the Paediatricians desire for further assessments until Pearl was two….

It happened. Pearl’s second birthday came, and she didn’t wake up walking. Or weight bearing. Or actually sitting up particularly convincingly. Poor show, my girl, poor show. Despite my assertiveness I had only postponed the inevitable, there was something wrong that probably needed a proper name.

We do like labelling things,us humans, don’t we? Let’s face it, life is unexpected and confusing. In the face of chaos, to control our fears, we label.

Objects have names which rarely relate to function, but allow us to slot them neatly into a category.

Our forefathers set off on expeditions to collect, label and categorise animal, vegetable and mineral.

In this ,we set out to both control our universe, and also assert authority over it. If that is the aim we really ought to get over ourselves.

Science seeks explanations, and that is the main point, it seems to me, of diagnosis.  Categorize, explain and understand. This is a noble aim.

I have spent my whole life fleeing from labels imposed by others. The Frumpy One, The Studious One, The Serious One, The Christian One , I just wanted to be appreciated for myself, that was all. I was not keen to have a label stuck on my girl even though it was fast becoming clear that she was “The Disabled One” Also if she had a diagnosis it confirmed that she had a problem she would not grow out of. I was not emotionally ready for what that may entail.

For the next 18 months our Paediatrician,who was nothing if not thorough, set about diagnosing the problem that was Pearl.

Ah there’s the rub. Pearl was happy, interactive, bouncy, giggly, fun.She clearly HAD problems, but she was not a problem. She was also the fittest of all of us in the house,  she rarely had a cold , and had no other medical problems.

Science and the NHS required me to put my beautiful, happy, healthy child through a series of invasive tests, while I read up on all the possibilities and shared them all with Mr Pearlie J,  because apparently ‘A Problem Shared is a Problem Halved’. (Actually ‘Misery Loves Company’)

Pearl had MRI scans (plural) blood tests (ditto), a spinal tap and a muscle biopsy. Parts of our child flew around the country  (and world too apparently) while we waited. And waited. AND waited.

You see for some tests they give you the diagnostic possibilities and then leave you 8 weeks to worry yourself into the ground. The prognosis of these various conditions were quite poor and the future looked, quite frankly,terrifying.Rather than having a child who was slow and would overcome difficulties in time, we had one who was ireedemably broken and would never live independantly.

The Professionals at this stage are happy, and slightly excited at being in control and possibly finding something rare to show students. Perhaps they can get a paper out of it?  The Scientists are busy analysing and everyone takes their eyes off the parents. No one thinks to ask how you feel about this, as you settle in for the long wait.

If I’d felt slightly ambivalent about testing the situation was compounded by the Paediatricians explanation for the first test.

“We will test her for Prader Willi Syndrome”

Me (unable to keep my big professional mouth shut)”Oh. But (apart from having no off switch when it comes to eating,in which my whole family has PWS) she doesn’t display any of the diagnostic criteria”

“No’

Me (unconvinced)”I don’t think she has Prader Willi. Do you think she has Prader Willi?”

“No, probably not”

Me(becoming exasperated but unwilling to either show it or give up)”So why do we need to test her?”

“It’s important to tick all the boxes”

This I feel is Science speak for “I need to prove I’ve not been clinically negligent”I personally felt it a waste of time and the tax payers money,however I was not the Professional in this situation but only the parent.

After 8 weeks we had a two page print out of what Pearl did not have.

After 6 months we saw a Geneticist who repeated some of these as she thought Pearl may have Cerebellar damage (she didn’t) or Angelmann’s Syndrome (nope).

The Neurologist took some scans (MRI) as I was convinced Pearl had Cerebral Palsy (no) and cut a chunk out of her leg to see if she had any metabolic disorders (also no). Pearl also had some cerebro spinal fluid removed to see, well honestly I can’t remember what, but it was all normal.

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Some labels are better than others….

What happens if you don’t have a diagnosis? First of all it’s not at all rare. Check out the Syndrome without a name (SWAN) website and you’ll see lots of fabulous undiagnosed individuals.

Secondly it’s not true to say you won’t get therapy or funding.In the U.K. many, many children given a  ‘non’ diagnosis of Global Developmental Delay (science-speak for, we haven’t a clue, in my experience) receive all the therapy they need. No diagnosis does not mean the issues are any less real.

Following this the highly specialist Consultants lose interest and put you on long term review. That leaves you,the therapists and the Paediatrician to find your way.

Friends and family (and those delightful inquisitive people you meet in the supermarket) find it very disquieting. She must have a diagnosis ! Look at her !  This is usually followed by “that must be so hard for you not knowing what’s wrong” head tilt.

I anxiously hug my guilty secret.I’m pleased. No diagnosis means no prognosis good or bad.She may achieve, she could speak, she could walk. Pearl is just Pearl and that’s that.

I never liked labels much anyway.