I received an email from my Grandmother.  I hadn’t updated my blog.  And my last post had mentioned news from a medical review.

I love that my Grandmother reads my blog.  I love that she sends me emails.  And I’m sorry for going quiet for so long.

We had the move.  The loss of internet.  The interruption of real life.

And then nothing to say.

In the first few years, my emotions were so raw.  That rawness in a way makes it easier to write.

Nowadays, you get news that the medical professionals want to stick a pump in your child’s stomach cavity so that it can send a direct doseage of baclofen to his spinal cord and it’s like . . .

OK.

I don’t know how I got here.

I was told multi-level surgery is on the horizon.  I guess the lesson is that one surgery is never the end.  I don’t know why I thought it would stop at one.

And out of those two announcements, I thought I had coped alright until I was told that Moo will probably never be capable of transfers.

It’s not even as if I expect him to stand.  I don’t.  I just want him to be able to take some weight or assist with moving his legs so that transfers aren’t done completely by my back.  I didn’t think that I was aiming too high.  I hadn’t set what I thought was an unrealistic goal.  I thought that I had proven myself not to be one of those parents that think my child will do the impossible.  And yet, I was being told that transfer assistance by Moo was unlikely.

Take another piece of my heart.

Today, I received a call from disability services which was a check up on our equipment application (lodged yearly for the last 5 plus years) and whether we still needed the requested equipment.  The equipment that I had nominated was a standing frame and shower chair.  Did we still require that equipment?

Well, the answer was no for the standing frame.  I explained how while we had waited for funding, Moo had lost the ability to stand.

The response was “how sad”.

Yes, it is sad.  But when I told a friend of mine about the conversation, she asked me whether having the standing frame would have made a difference.  After thinking about it, I don’t think so.

We didn’t wake up one morning and he couldn’t stand.  It happened over a period of time.  He can’t stand now because his legs don’t straighten.  He couldn’t stand before surgery cause his legs scissored.  And the scissor was a gradual process over a couple of years.  And I don’t think with the benefit of hindsight that much would have changed with the standing frame.  It may have slowed the process.  But it still would have happened.

The boys are settling into the new house.  Moo doesn’t like it as much.  May have something to do with it being so much smaller than the other house.  But he does love the size of the back yard.  Now if only I could stop our dog from doing her business out there.  Moo gets most upset by anything getting on his chair wheels.  It’s as if he had stepped in it.  He won’t move until I clean it off.  I guess I’m just lucky.

Moo announced the other night that he doesn’t like school.  Nothing unusual there.  But then he decided that he was going to send an email to his teacher saying, “Dear teacher.  Thank you for teaching me but I don’t like school and I won’t be coming back.  I will miss you.  Love, Moo”.

After more thought, he decided that the message may be better delivered by sending an Ooh and Aah email postcard decorated with “I will miss you” and the same message.

Problem is that in talking about this and spending time with Moo on the computer, Moo accidentally let the cat out of the bag.  I asked him what the computer screen message said and he read it perfectly.  I asked him how he knew that and he looked at me as if oops.  There goes that “I can’t read” argument.

I’m told that Moo has developed his cheekiness and isn’t afraid to express it at school.  His latest thing is to go screaming up to people in his chair and pull up at the last moment as they panic and go to jump out of the way.  He thinks it’s hilarious.  Others probably not so much.

So whilst living with Moo is no longer “raw”, it is fun.  I am lucky.  And I am proud.

Things could certainly be a lot worse.

I’m very time poor at the moment.

Moo had a great birthday.  And a great birthday party.  20 odd 5/6 year olds attended.  It was a bit noisy but  I survived.  I even over catered.  And Moo couldn’t believe how many presents he got.

He has had a rehabilitation review this week which I may talk about another time.  My head is still spinning.  I’m also devastated as nothing has turned out like I expected.  But don’t worry, he is still my beautiful boy.  He hasn’t changed, only what I am told to expect in the future.

We finished minor renovations on the new house so that we can move in over this weekend.  It means that we are without internet until Tuesday.  I haven’t told the boys yet.  Just wait until they also find out that we are without cable tv for the same period.  You will be able to hear them screaming at your house.

I’m also excited because I am attending the inclusive learning conference on Thursday.  I thought I wasn’t going to be able to go because of the big move and also work.  But hubby has offered to cover me at work on Thursday so that I can see the talk on Proloquo2go.  I hope that I get into it as I’m sure it’s going to be very popular.  I’m also thankful to A Brighter Future for helping me out financially so that I can attend.

So until I get internet again . . .

Moo - a first look

Six years ago tomorrow, my tiniest boy entered this world with a flash of red and no sound to make.  He was whisked away from us to be revived, having been born 13 weeks too early and from a pregnancy where he wasn’t expected to make it through the first trimester, let alone (almost) make it to the third.

After the longest 10 minutes of my life, he was brought back to us.  Wrapped up.  Small.  Fragile.  But alive.  A quick hello and welcome to the world before being taken to the NICU.  I think the only words I could say to him at the time was “I’m sorry” over and over again.

We thought the pregnancy had been a roller coaster.  And yet, we had only just hopped on for the ride of our lives.  I’m not sure whether we have hopped off yet

Kara Melissa did a beautiful post recently for Sebastian’s birthday.  She talks about the photo that she was given by the nurses when all the women in the ward around her had their babies with them.

I remember my photo of Moo that was given to me as I passed through NICU on the way back to the ward on my hospital bed.  I was still bed bound from the c-sect and not allowed to move.  I remember hugging the photo all night, as I drifted in and out of sleep.  And ringing the NICU every half an hour to see if there was any change.  That first photo is the photo above.  It’s a bit worse for wear now.

Over the last six years, Moo has developed into a child that I am incredibly proud to call my son.  He is everything that I wish he would be.  Brave.  Strong.  Maybe a little too stubborn.  And incredibly funny.

While the other boys have certainly grown into Daddy’s shadows, Moo remains mine.  Loyal.  Protective.  With a quick wit and a fierce tongue.

I love you Moo.

I hope you have the best birthday.

Marshall

Nine years ago, as the sun rose from the east over the beach, hubby and I entered the next phase of our relationship.  The wedding itself was beautiful.  The dawning of our new life together.  We had far more people RSVP “yes” then we really expected given the 6am start.  And save from one last attempt by Hubby to knock my wedding ring out of Ad’s hand and into the sand, it proceeded without any problems (I wasn’t going to let him escape that easy – I reached into the sand and found the ring instantly).

Over the last fifteen years, my relationship with hubby has certainly changed.  When we first started “seeing” each other, the biggest problem we had was that I was half a foot taller than him.  We would be walking down the street only for hubby to start getting excited saying “look at them, look at them”.  I would ask him why?  And he would tell me that “she” was taller than “he” was.  It took a long time for hubby to get used to the size difference.

Me, not so much.  Lets face it, when you are six foot two, most males are shorter than you.  And there is this whole thing where tall guys only go out with five foot nothing women.  What’s with that?

So it’s either see shorter men or not see any men at all

Anyway.

It took hubby almost six years of living together to make it down the “isle”.  He was undecided as to whether “I” was “the one”.  Even though Ad considered hubby to be his father and we had bought our first house.

And then my Mum came along, opened up her diary and asked hubby if May would be a good month for a wedding.  He said “probably” and she took care of the rest.  She even chose an easy number to remember – fifth of the fifth.

It really was the perfect wedding.

One difference between hubby and I has always been how we considered time.  It is infuriating to me at times as hubby really has little sense of how quickly the clock progresses through it’s cycle of twelve hours.  Before we met, I was never late to anything.  I was predictably early.  And I would be incredibly embarassed  if I was late.

Hubby never arrives anywhere on time.  He is always late.  So much so that his friends tell him the start time is half an hour before it really is, so that he can turn up at a respectable hour.

The combined effect of us is that now, I never turn up to anything on time and am continuously embarrassed. But I’ve found with four kids that no-one expects me to turn up on time anymore.  Or maybe, they realise that hubby, and then collectively me, are a lost cause.

The reason why I raise this is that while I had to wake up at 2am so that I could get my hair and makeup done for the wedding, hubby was being picked up by his best man at 5am in front of our house.

Best man knowing hubby so well, was expecting to have to let himself in and hurry hubby up so that he could get to his own wedding on time.   After all, this is the man that takes over an hour to shave and primp himself each morning.

It even occurred to me that I could be arriving at the wedding before hubby.

But when best man arrived, hubby was dressed and standing on the footpath waiting, with the house already locked up.  Best man was surprised enough to mention it in the wedding speeches.

Anyhow.

I remembered around 8am this morning that it was our anniversary.

Hubby remembered about 5 seconds after I said to him “Happy Wedding Anniversary”.

It’s not that we didn’t remember.

Okay, well it’s not completely that we didn’t remember.

It’s just that we have been so crazily busy lately.

Both of us having been sleeping where we close our eyes to rest them.  For me, that’s usually in bed cuddling Moo.

For hubby, it’s next to Scrappy on the floor in front of Playhouse Disney.

I think it you had have said to either one of us that this is how our life together would turn out, I’m not sure we would have believed you.  We weren’t going to have kids after we got married.  Ad was going to be the one and only.

And the rest is history.  A good history.  Albeit an exhausting history.

I wonder what the next 15 years together brings.

So we’ve settled on the new house. We are in the processing of undertaking what quick renovations we can afford before we move in. As well as paint the whole interior of the house. Boy, do I love painting (not).  I wish we could afford to do something about the kitchen but sadly, it’s going to have to stay the way it is for the time being.

We have four entrance points to the house, varying from 70mm in height to around 120mm. I’m hoping to ramp 3 of them. The fourth is off the laundry and let’s face it, when is Moo going to go into the laundry – he is a boy after all.

The other problem we have is that the sliding doors have a 50mm lip on the inside of the door. When we first looked at the house, all I noticed was sliding doors. I ticked off inside my head that it was accessible based on the sliding doors. Then one afternoon, I was sitting on the carpet with hubby after we had done an inspection and he asked me whether I had noticed “that” yet?  He was pointing at the sliding door. And I looked and saw the 50mm lip and thought “OMG”. Although the chair can go over that height, it isn’t exactly good for the battery and motor to be continuously jolted. The other issue is that Moo doesn’t like driving over what he thinks to be unstable ground.

Have you ever bought a ramp before? They are really expensive and prefabricated ramps can run into hundreds of dollars. Hundreds of dollars that are not tax deductible (I can feel a whinge coming on). And then you have to get the right ramp for the height. Incline gradient is extremely important. And stability so that the ramp doesn’t move.

But I am not all problems with no solutions. I found these threshold ramps at Bunnings. I’m in love with Bunnings at the moment.  The ramp comes in two sizes – 25mm and 50mm.  And the price is almost reasonable, $30 odd for the smaller size and $83.00 for the larger size (there is a lot more rubber used in the larger size).

We (meaning my wonderful Dad), are putting a 25mm chock on the bottom of the 50mm ramp to use it on the smallest step.  It doesn’t lose any of it’s stability by doing so and still gives it a nice gradient for the powerchair.  We (still meaning my wonderful Dad), has already cut another one so that it fits flush against the inside of the sliding door and wall to overcome that problem.  I think that this will be slightly cheaper than replacing the sliding door (which we do eventually intend upon doing once we have money to properly renovate).

For the remaining inclines, we (still talking about you Dad) are building ramps out of plywood.  Each will have a a ledge so it sits over the lip of the door.  Don’t tell hubby but we are planning on screwing them in to give Moo an extra feeling of stability as he drives over it.

Photos to come.

Have you gone down this route and have any great products/ideas?

Moo has been playing with photobooth.  Below are some of his artwork. He has had a couple of sidekicks to help out.

Modern influences

Dummy

psykadelic

Self portrait

Moo and Master C

As a lawyer, I am supposed to be fierce.  And stubborn.  Pig headed.  Tough.  And a bottom feeder – we might just leave that one though.

I’m expected to keep on fighting even when the going gets tough – because I’m tougher.  I suppose I could write a very entertaining blog about what goes on at work.  I’m just not sure how ethical that is.  But lets just say that the conversations going back and forth between the parties sometimes can get quite aggressive.  It can also be hilarious too.  With each lawyer trying to outdo the last.

I can tell you the story about a senior lawyer who is no longer practising.  He had the worst reputation.  Would fight everything even if the case was a lost cause.  Stories about him involved legal support staff that would walk off the job after half an hour.  An employee who had stayed longer than two weeks deserved a medal.  A bell at his door that you had to press if you wanted to speak to him.  Clients who were regularly told to “F” off.

I used to be on the opposing side quite often.  I guess I was just lucky.  I would send him formal correspondence setting out my client’s case and what I was advocating on behalf of my client.  I would get faxed back to me my correspondence with his handwritten reply on it saying “no”.  Or “nice try”.  Or “entertaining”.

I would send him correspondence saying “Dear Sir”.  I would get correspondence back saying “Dear Jacqui”.  If I rang him on the telephone, he would call me “Jack”.  Only my closest and dearest call me “Jack”.  Trust me, he just wasn’t that close.

But in a really strange way, I miss him now that he isn’t practising anymore.  He kept my job from being boring.

These days, I now face the most formidable of foes.  The stubbornest of opponents.

He is tougher than I am.

He is far more stubborn than I am.

He has patience.

He has intelligence beyond his years.

And I cannot beat him.  He makes me crumble every time.

My opponent is . . .

Moo

He is the strongest of opponents.  Stubborn than most.  And that killer smile.  Or the look he gives me as if to say “you really aren’t serious, are you?”

The other day, Moo and I had a face off over his homework.  He refused to read his book to me.  I told him that we weren’t going to do anything else until he had read his book to me.

He refused.

After a while, I had to leave him because he was wearing me down.  I would tell him that he had to read his book.  He would say no.  And I told him that I would come back when he agreed to reading the book to me.

He cried.  I would come back to make sure he was okay.  I would ask him he was ready to read the book.  He would say no.

And then he would mumble those words that break my heart just to think about hearing them.

“I want my Daddy!”

So, I would walk away.  He would cry.  I would go back to check and make sure he was okay.  I would ask him if he was ready to read the book now.  He would say no.  And then he would say those devastating words again -

“I want my Daddy!”

So, I would walk away . . .

I guess you get the gist of what happened.

Two hours later, after repeating the pattern many, many times, I asked him if he was ready to read the book.  He told me no and that he wanted his Daddy.  And I opened up his computer.  Logged into sesamestreet.org and played letter of the day with him instead.

Yep, he won.

I lost.

What can I say?  The kid is more stubborn than I am.  He also can manipulate me like no-one else.  He knew that I couldn’t hold up to a sustained attack.

Don’t let him fool you.  The kid is so much smarter than you think.