LOST IN TRANSITION – PART 15

The Pursuit of Happiness

The Pursuit of Happiness

This morning as I looked in my rear view mirror, I noticed Max's hand print in the frost. It was a freezing cold day and I left the print there for ages, reluctantly watching it melt away as I defrosted the rear window slower than was probably safe.

I now have a tiny new white car to fit in with my post-divorce restyling. I tend to notice new things with my car as a consequence of its sheer tininess, it is by no means a mummy car. The car has become known as Cary McCarface after the almost named boat. You might remember the news story, https://www.theguardian.com/environment/2016/apr/17/boaty-mcboatface-wins-poll-to-name-polar-research-vessel. The Natural Environment Research Council put out a public vote to name their new boat. Over 124,000 votes went to “RRS Boaty McBoatface” but it was decided that it wouldn’t be a dignified enough name and the boat was eventually named “RRS David Attenborough”, which came in fifth. I also quite liked some of the other suggestions including “RRS It’s bloody cold here” and “RRS Mr Splashy Pants”.  

So as a completely pointless act of defiance, our new car has a silly name that makes me smile. It is also far too small for my needs and fogs up immediately whatever the weather. But it does have a top that comes down so the boys can wave their hands in the air like they just don’t care and the front of the car looks like it’s smiling all the time. It kind of makes up for the shock lack of boot space, almost.

That handprint still stays clear in my mind as we drive to school. It makes me think about how big those hands have become. How I didn’t think they would ever get that big. It made me remember how many times I'd held those little hands in doctor's offices, how many hospital ID bands they had worn and how frightened I was every single minute, of every single day for years and years.

I realised that I hadn’t done that silent crying thing for ages while driving. There was a track by Athlete called Wires LINK < https://youtu.be/uriGngTXyrE > that had silly amounts of radio play when Max was at his worst. It was about the writer’s own daughter when she was in hospital.

“Running down corridors,

Through automatic doors,

Got to get to you

Got to see this through.

First night of your life,

Curled up on your own.

Looking at you now

You would never know..

I see it in your eyes

You'll be alright”.

I remember wallowing in those lyrics for weeks. Now they just make me angry because for so many of us “You’ll be alright” turned out to be nonsense. What I do think now is some days he’ll be alright and some days he won’t. I watched Max, shaggy haired in my rear view mirror and realised that today was an alright day. I smiled at him, he smiled back and said "What?". He’s so age appropriate sometimes. Happy.

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Lost in Transition – part 13

As Good as it Gets part 13

As Good as It Gets

6 minutes early. Lovely.

Without looking up from her screen, the receptionist, wearing a black and white sleeveless leopard print top, red rimmed glasses and the yellowest, yellow hair tied back painfully tight asks for Max's DOB, next of kin, doctors address...all fine, “take a seat”. Still no eye contact. I hold fast stubbornly until she finally looks up confused and asked me to take a seat again. It’s the principle of the thing and I’m feeling like I need a bit of a win today. An easy win granted, and an almost unnoticeable win but the joy is in the small things right? So dear receptionists, just so it’s clear, eye contact is not time consuming it isn’t exhausting it just makes us feel human, it matters.  And so here we are again. Max is already back on his ipad. Minecraft calls and he sets fire to a tower with a newly selected lava block.

The magazine pile is eclectic as usual in the Maxillofacial Clinic. One National Geographic (I read that edition last time), Gardeners World Magazine, Patchwork and Quilting, 8 copies of Classic Scooterist (I wonder which doctor donated that little aspirational stash?), 2 copies of My Weekly, Puzzles Galore!, Simply Knitting, Select Sudoku and the compulsory tattered copies of Woman’s Weekly. However, I do think Military Modeling and French Property News are a little lateral even for Cambridge. I wonder if hospital magazine piles vary from area to area? I’d love to know.

2 minutes late now. This appointment is to check Max's bone graft and his new blue braces. Every time we've been in this particular waiting room before, Max always asks the same two questions...Will I get back to school in time for lunch? And will it hurt as much as last time? A big hug instead. I don’t answer either question, I never do. I don’t like to break promises.

8 minutes late. Today the chairs are set up in rows all facing each other. Characters of note include a round woman with a two tone haircut. She needs to get her roots done but I don’t think it’s a priority, she doesn’t look happy. She has a walking frame and a shockingly old looking dog with enormous eye brows. There is also a little boy who has yet to learn how to use his “inside” voice. I'm guessing he's quite new to all of this because his mum is catching everyone's eye and smiling politely as new patients take their seats. This is not the approved etiquette.

There is something perfect about a waiting room because until they call Max’s name my delicious fantasies can keep swimming through my mind like an overloaded washing machine.

The  first one is a classic…The consultant takes off her glasses, puzzled, “I’m not sure why Mrs Marek but everything has magically corrected itself.”

or…

A research team huddle around Max’s bed, “There’s a new treatment Mrs Marek with extraordinary results, completely pain free too.”

Or…well you see what I mean. I think that’s why people buy lottery tickets. They know they won’t win but it’s the minutes or days that you have until the draw that allows you to dream that everything’s going to be OK. The minutes I’m currently stealing in this waiting room are also allowing me to imaging that it’s all going to be OK.

 

If you’re in the same place, you might want to check out these useful links…

The National Autistic Societyhttp://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

 

Sky Badger can also help you with...

Personal Independence Payment (PIP)

Education

Find extra help at school, information about Education, Health, Care Plans (EHCP), apps & programmes, tech and IT for supporting learning and sensory activities.

disabled holidays uk

Holidays & Free time

Find holidays, sports, free cinema tickets, theatre, clubs, art, dance, music, days out, make a wish charities and more.

gwvmbgpp-pq-steinar-la-engeland

Useful technology & kit

Find sensory toys, useful technology, trikes and bikes, wheelchairs & mobility.

disabled grants

Finances

Find grants, governemnt benefits and help with your utility and council tax bills.

oqmzwnd3thu-helloquence

Legal stuff

Find out about disability rights, educational and medical law and how to find a specialist advocate or lawyer.

Personal Independence Payment (PIP)

Medical stuff

Find information about your child's medical condition, medicines that they take and mental health support.

Lost in Transition – Part 9

Max

The Crying Game

Between you and me I feel waves of guilt resurface when I go to Max’s medical appointments. This is odd, and I really hope I’m the only mum that feels this, but I still kind of blame myself for everything that’s gone wrong for Max. After all, my only job was to grow a baby like everyone else, pretty much everybody else managed it just fine. But somehow I screwed it up and now Max has so many more challenges, challenges he shouldn’t have. Challenges that don’t feel fair.

I find myself thinking about horrid people, bad people, wondering why things don’t seem to happen to them. I read about mums shooting up, boozing it up while pregnant and it makes me crazy. Seriously, I even gave up coffee, did the folic acid stuff and took up Yoga (I hate yoga). I hate feeling like this. I know it doesn’t help to wallow about my pregnancy history with Max but I can’t help myself going back there…perhaps it was that crop sprayer when I went on a walk? Or fumes when I painted his nursery? Maybe it was all those microwave meals in the 80’s? Or the mechanically retrieved meat products, the only stuff I could afford at college? Maybe it was the oil-paint or the canvas primer I worked with day and night? Or maybe it was some genetic curdling and if I had married anyone else then Max would be OK?

And then I think about Max...

And this, dear friends, is why I telling you this. Max doesn’t think his life is unfair. Max is the happiest, coolest kid I know. He loves school, has incredible mates, a girlfriend, he’s talented, he knows what he wants to do, he’s tall, handsome and most importantly he’s happy in his own skin. Max likes himself and everyone else likes him too…so what makes me think I have any right whatsoever to feel anything other than proud?

It turns out that my job was never to grow some mythical perfect little man. It was to help whoever my little man turns out to be to have the most exciting and adventurous journey he can have. And yup, it’s a serious fight some days and that chocolate cake and ‘do not disturb’ sign still call but that’s not what it’s about. Doctor Bob, Head teacher Bob, TA Bob, my extraordinary family, my warrior friends…we’re Max’s team. It’s impossible to feel lost in a team.

 

If you’re in the same place, you might want to check out these useful links…

The National Autistic Society- http://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

 

Lost in Transition – Part 4

My Neighbour Totoro

You may never have heard about the classic kid’s movie My Neighbour Totoro. It’s a brilliant and deeply surreal Japanese animation about a size changing rabbit type thingy and a Cat bus. I’m not really selling it but it’s quite something….

...it’s also the movie my boys put on over and over again the day my ex-husband left us.

None of us saw it coming, I’m not even sure my ex saw it coming. It was a Sunday morning and he was gone by 10.30am and that was very much that. The three of us spent the entire day under duvets on our sofa cuddling, eating biscuits, crying and waiting for the sky to get dark and the day to finally die.

I could say it was the worst day of my life but it wasn’t, not by a long shot but it was the worst day my boys had ever had especially for my little one, my sweet little Louis. Louis is Max’s little brother. He’s now 12 going on 42 and that is (I think anyway) because Louis had to grow up too fast.

When Max was at his worst, about 6 years old and Louis 4, I’d got them both super cute red and white striped PJs. They looked like old fashioned illustrations for hard backed children’s books, gorgeous.

The First Time...

The first time Max had a seizure the ambulance men cut his overpriced stripy PJs in half to attach heart monitor stickers. Top tip here dear friends, the sticky residue from heart monitor stickers is really hard to get off a grumpy little boy’s tummy…tonnes of moisturiser works a treat…You’re very welcome.

As the ambulance men hooked up all of their kit, Louis stood at the front door in the dark. It was so cold. It always is when Max has seizures. I’m not sure why but all the doors are left open, I never remember to close them. I also never remember to pack Max’s shoes but that’s another story. By the time Louis was 5 he knew how to operate the oxygen and suction machines. He reminds me to give Max his meds. He also takes the brunt of Max’s postictal rages.

For years I’ve left him with friends sometimes for weeks on end to take Max to appointments, assessments and treatments. He bounces from friend to friend, spare room to spare room. He was such a lonely little boy, I’m not sure much has changed.

Now Max is in Transition, Louis gets to go on the back burner once again. He needs me more than ever but I’m still metaphorically making him stand in the dark in those stripy pyjamas.

When people talk about young carers it sounds like such a small thing. A young carer is someone whose life is significantly impacted by a disabled family member. What it actually means to me is that I stole from him. I made him grow up too fast. I will spend the rest of my life trying to make it up to him. It frightens me but I don’t think I can fix it.

 

If you’re in the same place, you might want to check out these useful links…

The National Autistic Society- http://www.autism.org.uk

Relate - https://www.relate.org.uk

Epilepsy Action - https://www.epilepsy.org.uk

Lost in Transition – Part 8

The English Patient

I’ve just had a lovely catch up with one of Max’s consultants. She really is lovely. It’s funny how spending time with someone that you’ve shared the very worst of times with can bring such laughter and friendship. I suppose it’s like a private member’s club that no one wants to be a member of. I do so appreciate the company.

 

Let’s call her Dr Bob. You see Max’s condition(s) haven’t changed so he doesn’t see the specialists as often as he used to. There’s a bit in the back of my mind that wonders if consultants get bored and want to figure out the fun, groovier conditions…something more entertaining, more likely to get an appalling disease named after them perhaps?

I’m not complaining though, really...

I’ve always hated that constant panicky, sinking feeling in consultant’s waiting rooms. You know that feeling when you know your baby’s future hangs on the next test result and you’re stuck in a full waiting room opposite the squirmy, screaming toddler and all you can do is smile kindly?

What you actually what to do is go home and on the way buy a great big chocolate cake and a bottle of wine. Then close the curtains, put on a boxset and eat the cake with a serving spoon with a ‘do not disturb’ sign on your front door.

So, yup, I’m happy I don’t have the hospital runs to London, Cambridge, Northampton, Bedford, Ipswich…and well, it’s a good thing.

The appointment I’ve just had was to get an up to date medical report to submit to Max’s transition meeting. The school have also managed to squeeze in his next annual review too so the report can multi-task which is a fine thing indeed.

There is something about a certain type of Paediatric Consultant that feels like a hug. It feels like teamwork, like everyone is working together to make Max’s life as ‘average’ as it can be. You know, I never thought I’d be fighting for average. And I never thought average would be so very hard to get. Damn.

So dear Dr Bob, I’m so glad you’re fighting for Max too. Most importantly, I’m so proud that Max has this undefinable factor that means that people don’t forget him, they see him as the precious little man I know he is.

If you’re in the same place, you might want to check out these useful links…

The National Autistic Society- http://www.autism.org.uk

Epilepsy Action - https://www.epilepsy.org.uk