From the side, a short woman cut across in front of Moo.  I don’t think she realised that the chair had anti-tippers sticking out from the front of it.  She turned and gave Moo a dirty stare and told him that he had been rude.  Moo at this point, hadn’t moved an inch and was still trying to look at the remote controlled helicopter.

“I know you were rude,” I said to her.  ”You walked straight in front of him.”

“No I didn’t,” she retorted.

“Yes, you did,” I responded.  ”I watched you do it.”

“Shut up you fat b*tch,” was her cleverly crafted reply.

And with that I felt the anger build inside of me.  It honestly did occur to me to smack her one.  I see people getting into trouble each day because they can’t keep their temper at bay.  And here I was contemplating smacking someone.

When I got home, I told hubby about what happened.  I asked him if her words to me would amount to provocation?  Bless him, he answered a resounding yes.

What do you think?

Last week . . .

On Monday, Scrappy hopped into Moo’s powerchair, running on full speed into the wall where he of course, left his mark.

Tuesday, he decided to flood the bathroom by sticking toilet paper in the drains.

Thursday, Scrappy tipped out all the toys boxes.

And Friday, he decided to wash down the carport.  Including the electric garage opener.  Unbeknownst to me, I hit the button to open the door only for the motor to sizzle and burn out.

Today, we were fishing and Scrappy put down the rod on the pontoon to go and do something else.  Just as he put it down, a fish took the bait and the rod went straight off the edge of the pontoon into the water.  I’m waiting for the tide to get low enough so that I can hopefully go back and retrieve it (don’t tell Master C – it was his rod).

My plan is to save all the invoices to repair everything so that when he grows up and asks me why there isn’t any inheritance, I can show them to him.

1.  Never name your kid Mitchell.  There is something that attracts to the name.  When it was first pointed out to me how many mothers are screaming “MITCH-ELL”,  I took it as a joke.  Nope.  No joke.  That’s me.  Every five seconds or so.  Ten seconds on a good day.

2.  Buy the kid a wheelchair.  Not a stroller.  Even if they can’t push it.  Strollers are for babies.  That is, unless the kid has another mode of transport like a walker

3.  Hoard everything.  You never know when it is going to come in handy.  Really.  I recently found Ad’s old original playstation games which still play on the PS2.  Turns out the old games are easier – graphics aren’t as good but thats what imagination is for.

4.  Meditation is when you have four kids screaming/yelling and you can’t hear anything for the birds tweating.  It’s not an easy technique to learn but boy, does it really help out.

5.  When the Mum at the next table is giving you dirty looks because your two year old is licking his spilt drink off the eatery table – smile.  She just hasn’t had kids/had enough kids yet/had boys.  She’ll learn that you only worry about the things that you can change.  I can’t change Scrappy licking the table.  In fact I can’t change Scrappy doing anything.   I just hope that I manage to stop him before he gets into too much trouble.

6.  When a kid tells you they need to pee – they already have.  That’s why you take spare clothes and wipes.

7.  Kids will do most things that you ask them to do if you pay them money.  The key is you only resort to payment at desperate times otherwise they will ask you to pay them all the time.

8.  Give the kids Soda Water and tell them it is lemonade – it takes years before they work out that lemonade is actually sweet.

9.  There are positives to your kid not being able to talk well – most people will smile politely and nod their head as your kid tells them how much he hates them and how he wants Darth Maul to come along and chop their head off with his lightsaber.  Just think of what the reaction would have been if they could understand.

10.  Never, never give up hope.

I’m off to pick up my bad parent award.

Because my life isn’t a movie, I never fell into my hubby’s arms and cried.  In fact, I’ve never let go of that primal cry that denotes the breaking of ones’ heart.  Every day after diagnosis, I have tried to pick myself up and butt my head against that brick wall yet again.  It’s been like ground hog day each and every day.  The worst thing about me saying is that there are people out there that have no idea what ground hog day is.  And have never seen the movie.

I’m getting old.  Sorry Mum & Dad.

A sincere part of me tries to find the positive in everything.  Your kid can’t walk – but at least he can talk.  And then the teacher asks you to fill out a slip for a referral to a speech therapist.

At least he can eat – save for the fact that he is under the 5th percentile for his age and going the wrong way off the charts.

He doesn’t have seizures – Oh shit, thats right he does.  The seizures that you don’t know when or where they are going to happen.  Trying to find the positives there.

He has only mild CP.  Nope.  Not even close.  Why is it that some people get a severe diagnosis for it only to turn into “mild” as the child ages.  And Moo, he gets the “mild” diagnosis, only for it to turn into “severe” as he ages.  Just lucky I guess.

But back to the primal crying.

I guess I (wrongly) judge Melanie because she talks about this type of stuff.  The absolute devastation that you feel years after the event.  The – I don’t think I can drag myself out of bed today but what choice do I have?  Part of me wants to slap Melanie and tell her to get over it.  Isn’t that what we are all supposed to do?  Get over it?  Otherwise we will get criticised because our child might one day read what we have to say on a dark day some time in the years gone by?  Because we have to pretend that we just took the diagnosis, let go of all our dreams, our sore back, our exhaustion and said right, yep, this is okay. Everything is going to be okay.

Life isn’t like that.  At least, my life isn’t like that.

The other (real) part of my wants to congratulate Melanie because she acknowledges that it isn’t a bed of roses.  And I respect the raw courage that she displays each and every day.  That she admits that some days are just plain tough.  Some days, I just don’t want to hop out of bed.   That is despite the hugest smile and the love of my life staring back at me.

So where does the part between me loving my son with every fibre of my being, take on the part where I am still struggling to accept that this is bloody hard, soul destroying and scary stuff.

I wish I could fall into my hubby’s arms and cry.  The truth is that diagnosis has driven us further apart.  That we can no longer talk freely with each other.  Because if we do, we are “betraying” our beautiful boy.

I love Moo.  I wish that you could see in him way I can.  I know you don’t.  I know, because I am the one interpreting what he has to say.  I am the one making sure that each and every day he is treated with the respect and admiration that he not only deserves, that is his entitlement.  It is an entitlement granted to every other person.

Why not him?

** And whilst I wrote this incredibly self indulgent post, Scrappy has taken the opportunity to use his quiet time to crack two dozen eggs on the kitchen bench and floor.

Point taken.  Whinge over.

At 6.30am the next morning, Moo was starting to come out of his sleep.  Before he had even opened his eyes, he was crying, “I don’t want to go to school”.  The crying continued for the next two hours.

Apparently, he settled down once he got to school.

The next day, Moo cried upon learning that he would have to go back to school.

And the following day.

And the next day.

You get the drift.  Only 12 more years of this to go.

***

Moo was at hydrotherapy.  He had been going well.  I guess I was getting too confident.

“Do you think that he will weight bear?” I asked the physiotherapist.

She crumpled up her face.  She then put her finger to her mouth.

“Umm.”

I had been expecting a resounding, immediate yes.  Instead I got an eventual “I don’t know”.

It’s left me a bit tearful.  I’m confident that I have come to terms with the fact that Moo may never walk.  But to think that he may never stand – that really has me worried.  I’m trying to take a step back and wait and see.  You never know.  Right?

***

Scrappy and I went to the shop to get some groceries.  I got myself a coffee and him a babycino.  I sent a photo of Scrappy drinking his babycino to Hubby.  Who immediately text me back to inquire what he was drinking.  Hubby thought I was giving the two year old caffeine.

Scrappy doesn’t need caffeine.  He doesn’t need any extra sugar.  He is enough of a handful without it.

We went to the game shop to get a new Wii controller for the boys.  Scrappy took a liking to the drum sticks and kit to go with the playstation 2.  Thats just what I need.  Scrappy on the drums.  As if the house isn’t noisy enough as it is.

We were in the supermarket when Scrappy gave a great example of why you should always wash your fruit or vegetables before you eat them.  He is quick too.  No sooner have you got something out of his hands, has he found something else to grab onto.

“Don’t put that in your mouth,” I said to Scrappy.  So of course, he takes it out of his mouth and tries to put it back on the shelf.  Note to self, don’t take Scrappy grocery shopping in future.

We gave the boys one of the old MacBooks.  It was the computer that Moo was supposed to magically learn how to do everything on while he was recovering from surgery.

Unfortunately, what happened was that I immediately noticed that Moo could not use a mouse.

So I did what every other person would do, and I found him a smaller mouse for his very small hands.

Nope, that didn’t work either.  Nor did the small mouse where you squeeze it to click.  I became frustrated.

I lashed out and spent a fortune on buying him a big trackball.  I even got the one that you can adapt for a switch.  At this stage, I was thinking that we may need to get the switch to enable the “click”.

He can use the trackball but not terribly well.  He is clumsey.  He gets frustrated.  And he asks for help continously (now you have worked out the real reason for my trying to find the best adaptive technology for him).  I’ve been reluctantly coming to terms with needing to buy him a switch.

Whilst I’ve been at work, Moo has been on holidays.  He has been playing the playstation.  He has been driving around in his powerchair.  He has been fighting evil as a powerranger.  And he has been on the computer under the supervision of the fab Miss A.

He asked me tonight to play the computer.  I put him in his seat and placed the computer on the adjustable table in front of him.  I put the internet on the playhouse disney web-site and I walked away, the trackball easy within reach.

And when I came back, I saw him using the computer very well.

WITH THE TRACKPAD.

Guess what every MacBook has?

That’s right.

A trackpad.

I don’t know why I keep making it so difficult for myself.

You see, Moo has lost his first tooth.  It took a week to come out.  When it started getting wiggly I told Moo that he better not swallow it cause I wasn’t going to sift through his number two’s to find the tooth.  I don’t think he could work out whether I was kidding or not.

I wasn’t kidding.

In the end, it came out in his fingers.  He proudly handed it over to the fabulous Miss A.  She dutifully put it in a glass for the tooth fairy to retrieve.

I on the other hand, woke up the next morning with a feeling that I had forgotten something.  I got up and did my usual trip to the bathroom where I put my contacts in.  I walked around the house trying to work out why I had that niggling feeling in my stomach.  I unpacked the dishwasher while I thought about it.  And then I PACKED THE DISHWASHER UP.

It was at this point in time, after I closed the dishwasher and turned it on, that I remembered what I had forgotten.

I ran into the bedroom.

“Where did Miss A put Moo’s tooth?” I asked hubby.

Hubby, in his half asleep state, wandered down to the kitchen and said,”In the cup that was sitting here.”

Oopsey daisy.

After stopping the dishwasher and spending twenty minutes hunting through the dirty plates and food remains, I did find his tooth.  I’m not sure if it could ever be used for stem cell retrieval now

Anyway, the story ends with the tooth fairy leaving $5 for the first tooth of the special child Moo.  He was stoked and wouldn’t let go of the money for hours.

But that’s not the reason for my failure.

Moo won’t show off his gap.  It is so cute.  But every time that camera comes near, old clamp lips appears.

Complete failure.

So, as alluded to in the post pain, pain, go away, Moo is on some heavy drugs.  One of those drugs is clonidine.  As Moo was discharged from hospital on a Sunday, we were kindly given four doses of the clonidine to take home with us to get us through the following day and a half.  The pharmacy did us up a prescription in a liquid form when they opened on the Monday and hubby picked it up on his way home from the Supreme Court.

When hubby picked up the clonidine, it had been refrigerated.  Hubby had a work experience student with him so he put the liquid on the floor of the car as he drove the hour trip home.  He went straight home so that he could return it to the fridge.  However when he picked it up off the floor of the car, he noticed that it was warm.  Then he realised that it had been sitting on the transmission.

Hubby gets on the phone to the hospital and is told it should be right.  However, he should check before he administers it and it should be a clear liquid.  If it’s not then there might be a problem.

Do you see where this is going?

First dose where we need to use the filled prescription is midnight.  I try to be smart enough to load up the syringes so that his 10 o’clock and midnight doses are ready to go instead of me trying to work them out bleary eyed.

I go to draw the clonidine and it is milky.  This is around 9.30pm when I am just about to hop into bed.  I call hubby and show him.  ”Oh,” he goes.  Oh, indeed.

Hubby gets on the telephone.  This is something that he is really good at is talking to people on the phone.  I hate telephones.  I find it too impersonal so I would rather talk to someone in person.

He rings the local hospital.  Too busy to speak to him. Try State Health.

Rings State Health.  Lovely nurse.  Quite sympathetic.  However has no idea whether the drug is okay to use.  Suggests he rings a local chemist.

By this stage, it is almost 10pm when the local chemist closes.

Hubby rings local chemist.  They have no idea, they don’t stock clonidine.  Try another pharmacy a few suburbs away.

Rings other chemist.  Nope.  No idea, don’t stock drug.

Hubby rings back local hospital.  Still too busy, ring State Health.

Rings State Health.  Nurse is still very lovely and helpful but in the last fifteen minutes, still hasn’t worked out the answer.  Suggests he rings Poisons hotline.

Rings Poison Hotline.  They think the drug should still be okay but isn’t absolutely certain.  Maybe it’s best that he skips the next couple of doses (not an option as drug is not one that can be stopped suddenly).

In desperation, rings big city hospital and asks to speak to pain management team.  Doctor that discharged Moo is on duty.  Is put straight through to him.  Tells hubby that he will ring pharmacist on call and run it past that person.  Takes hubby’s phone number and will ring back.

Rings back.

Yeah, I know.  I’m still trying to pick myself up off the floor about that one too.

Spoke to on call pharmacist who said no, too risky and don’t use.  He suggests hubby rings back local hospital to try and get make do script to get us through until big city hospital pharmacy opens in the morning.

Hubby rings local hospital.  Still too busy.  They don’t care.  Suggests he rings back big city hospital as it’s not their problem.

Hubby is just about to loose it.  By this stage he has been on the phone for over an hour.  Rings back big city hospital to tell pain specialist doctor that he is hopping in the car to make the hours drive to pick up the make do provisions until the pharmacy opens in the morning.

And get this – turns out that the pain specialist doctor is at home.  The switch board is transferring calls to him at home.  He says, don’t do that, I will ring local hospital for you and ring you back.

Rings back.

(OMG – Are these people amazing or what?)

Has arranged with local hospital pain specialist doctor the medicine.  He is expecting you soon.

Hubby goes to hospital and picks up medication.  Moo’s midnight dose is administered at 12.10 am.

Moral of the story is – don’t put medicine on the floor of the car.  Oh, and there are some amazing medical practitioners out there – you just need to find them.

Woke up this morning and the fabulous Miss A was sick.  Don’t get me wrong, she is fully entitled to her sick days and she sounded really bad on the telephone but was just another one of those head butting episodes.

On a brighter note, Moo had hydrotherapy this arvo and did fabulously.  PT is so much happier with his presentation.  She is also amazing.  Moo loves her already.  He doesn’t complain about going to her.  He doesn’t complain about hopping in the water and as he considers it in similar distaste to bathing, that is a big point.  She is also a feldenkrais practitioner so I am really looking forward to the time where we move beyond the pool.

Now, where is that glass of wine?

Just a quick update.  Moo slept through the night last night.

That’s right, between his last dose at midnight and six o’clock this morning, there was not a peep from him.

[Applause]

Moo also rolled over for the first time last night.

[Applause]

He got stuck and couldn’t roll back but lets not focus on what he can’t do

He told me last night that he thought that he might crawl today.  He didn’t, but it just goes to show how much more confident he is becoming now that the pain is under control.

The best thing as far as I am concerned is that he has soft casts to put on at night time to help him with his stretch.  Tonight as I was getting him ready for bed, I put on the soft casts and his legs went straight into them.  No having to massage his leg or pulls his feet and manipulate the cast until it got close enough for me to put the sock on it.

He is going well.

Do you want me to tell you?

Well, reluctantly I will share.

The secret is this – I can ramble when I want to.  I just don’t think anyone will read my ramblings.  So I guess, if you don’t want to read my rambles then this isn’t the post for you.

If you had have asked me yesterday whether I felt positive about Moo’s surgery, I would have honestly told you that I regretted signing the consent forms.  Today, I’m still sitting on the fence.  I am disappointed that my expectations were so different to the reality.  I am disappointed that one of the main drawing points to Moo having the surgery – being that he would be able to weightbear and therefore assist with transfers – may not eventuate.  And I’m upset by the events that have occurred in the last week.

You may remember my last post on surgery contained the learnt pearls of wisdom being KEEP ON TOP OF THE PAIN RELIEF.  Cheryl quite rightly pointed out that some heavy duty drugs are needed to do this.  As a parent, I know that I don’t feel comfortable with Moo being on addictive drugs for such a long period of time.  Uncomfortable or not, what is important is keeping Moo and his pain at a manageable level.

With hindsight, we didn’t do this for the time period that he spent in the spica.  We had so little sleep during this time.  And he had even less sleep than we did.  Despite being told that the spasms would subside in one to two weeks, they never did.  With hindsight, I should have done something about it then.  However, we suffered through the six weeks thinking that everything would be alright once the spica was removed.

Wrong.

Big mistake.

To compound things, it seems that an ever so small mistake happened at the hospital when the spica was removed.  That mistake being that we were sent home without Doctor review.

With hindsight I should have known that following the spica removal I was receiving dodgy advice.  We (being hubby and I) were told to go to our GP to get a new script for pain medication.  At the time I was confused as we were in a hospital and why couldn’t we get the script here.  When you think about it – what GP is going to write a script for valium for a 5 year old.

Then there was the advice to put leg wraps on Moo’s legs.  At the time, Moo’s legs were stuck in exactly the same position that they were in the spica, bent and up in the air.  I was wondering how we were ever going to get wraps on.  The other piece of advice was to stop treating him as if he was in a spica when we handled him.

So after a quick bath for Moo, we were told that we were right to go home.  Then the nurse came in and told us that we were right to go when we were ready.  And then she went and got the paperwork for us to sign before we left.

With hindsight, sirens should have been going off in my head.  We hadn’t even seen a Dr.  I am really disappointed in myself for allowing them to send us home.  I should have said something.  I should have asked why we couldn’t get the pain medication script at the hospital.  I didn’t.  I signed the forms and we came home.

Now I know that the no spica is even more painful than spica.  I know because Moo screamed the first night.  I know because the lack of sleep continued.  The spasms continued ferociously.  We sent Moo back to school on Monday.  The message coming home to me was that when  he was reviewed by the education PT, there was concern regarding his recovery and pain levels.

We went to hydro on Tuesday.  When I picked Moo up from school, he was just about falling asleep in his powerchair.  At hydro, the PT expressed to me that she was very concerned about his pain levels and that she wanted me to ring the surgeon and be persistent.

And then she also added that she had received an email from the hospital saying that we had taken Moo from the hospital before the surgeon had reviewed him when the spica was taken off.  I explained to her that we had been sent home.  She told me that wasn’t how the email read and offered to send it to me.

I got on the phone to hubby.  And he started the process that wound up with me taking Moo to accident and emergency at big city hospital an hours drive from home.

As a lawyer, we are subject to regular ongoing legal education.  We have compulsory subjects that we must do each year.  This includes seminars on protecting yourself against claims.  There is a story that quite regularly comes up at the seminars about a surgeon and an anaesthetist.   The surgeon has a wonderful bed side manner and thoroughly explains to the patient what is going to happen and when.  The anaesthetist is a right bastard and is rude to the patient.  Operation ensues.  Patient ends up with complications.  The anaesthetist did a faultless job during the surgery and the surgeon’s performance is less than satisfactory but when it comes time to institute legal proceedings – the proceedings are brought against the anaesthetist.

The story is about the importance of communication.  During the last few days, I’ve thought about that story many times.

At the hospital, x-rays showed that everything looked okay.  I was told that spasms were to be expected and it was implied that this was all my fault for taking him home when the spica was removed.  We were again told to go home.  When I asked how long the spasms would continue, I was told a couple of weeks.   And I could see history repeating itself.  The weeks of no sleep and seeing Moo in pain finally got to me. I fell in a heap and started crying uncontrollably.  Through my sobs I managed to get a request to see a pain specialist (anaesthetist).  I was told that the wait could be quite lengthy.  After speaking to hubby, the decision was made to wait.

The ironic thing was that I hate hospitals.  The less I have to go there the better. And now I was refusing to leave.

The pain specialist arrived a couple of hours later.  He pulled up a seat and sat down opposite me.  I tried to stay calm as I told him what my problem was.  I was expecting another brick wall.  Half way through my ramblings, the anaesthetist picked up his seat and moved it closer to me.  He was listening to what I had to say.  He was polite and kind.  He gave me an indication of what he was going to do when he left me and then he went and did it.

So, the end result has been this.  Moo is still in hospital.  He is on additional pain meds which make him look a bit drunk.  His spasms have subsided so that he only had half a dozen last night as compared to the 21 spasms the night before.  He has gotten some sleep.  He has started eating again.  And he now has movement in his hips.  His legs are getting straighter.  And he doesn’t complain of pain if I pick him up.  He doesn’t complain of pain if I roll him over.  He is happier.  And so is hubby and myself.  We have all gotten some sleep.

The moral of the story, if there is one, is to keep the pain levels under control following surgery and beyond.  Don’t accept it as being “normal”.  Just because your child has a disability doesn’t mean that pain is an expected outcome.  That pain in itself can hinder recovery.

I don’t want to play the blame game.  The miscommunication for whatever reason happened and it is necessary to move forward.  I’m still smarting from the comments made to me along the way.  I thought it was obvious how much I love Moo and that he is very much my priority.  For the record, I love that child so very very much.  He means the world to me and it has been incredibly difficult seeing him in pain.

And if you have managed to read all this way, I can share with you his latest Moo-ism.

Moo was on the speaker phone to his brother Master C who was whining about how come Moo had gotten a new toy.  Moo started trying to press all the buttons on the phone.

“Daddy, how do I hang up the phone?” he asked.  ”I’m sick of listening to Master C’s nonsense”.