Home Sweet Home...

WE ARE GOING HOME!!!

Nicola's surgeon came in this morning... he told me he was not prepared to discuss her recovery, lest he jinx what is happening... but he has us booked on the 11am flight and we're going home!

Woohoo!

4 days post surgery and we're outta here!

Go baby girl!!!

Fear of the Known...

There are a lot of different kinds of fear... but I think I am learning that the single worst kind of fear is fear of the familiar... or fear of past experiences.

People are afraid of all kinds of things... but to be afraid of something that you have already experienced is a palpable fear made even stronger by the fact that you already know how horrific the experience is...

And this is the position that I find myself in now... I am afraid of reoccurance.

In September last year Nicola had to have surgery to have a gastrostomy button put in, and while they were in there they did a fundoplication. The gastrostomy was fine, there were no problems there at all... but because of an already weakened oesophagus, one tiny little stitch pulled... and that tiny little stitch nearly killed her.

When it pulled it tore her oesophagus and filled her plural cavity with air and fluid, collapsed both of her lungs, gave her pneumonia, and caused an infection so massive that she needed to be taken into theatre every other day to have them surgically clean the infection from inside her chest... that was on top of the two intercostal chest catheters that she had had surgically inserted to help stuff drain away.

She spent many many weeks in intensive care on life support hovering on the brink of death before she made a slow but steady recovery... months in hospital before we finally got to take her home again...

And then a couple of months after she was discharged, she developed a giant paraoesophageal hernia through her fundoplication... and we were given the news that the surgery had to be done again.

To say I am scared is an understatement.

It has been a year and I still wake up at night hearing the sound of the ventilators alarming on her ICU bed.

I can still remember how it felt to have the entire team of ICU doctors descend upon her bedside to tell me that *IF* my daughter survived the next 12 hours, then we would talk about what to do next... but it would be best to bring my family down now to say goodbye.

The thought of going through all that again... living just to get through every single hour and never knowing what was hovering on the next horizon... the thought of going through it again is a faint cold fear unlike anything I have ever experienced.

I do NOT want to do it... I do NOT want to risk it... but at the same time, I know I have no choice...

How do you prepare for something that may quite possibly kill your child? How do you willingly hand them over to the anesthetists, not knowing if you will ever get to hold them again... to look into those beautiful eyes, to savour sweet kisses and warm snuggly cuddles...

How do you go through with it when every fibre of your being demands that you run as fast as you possibly can in the opposite direction?

Well... I guess I will find out on Tuesday...

A Step In The Right Direction

Well... go find the biggest hugest piece of the solidest wood that you can find and let me touch it!!!

Because... touch wood... she came through the surgery well!

Her surgeon seemed very pleased with everything. She was out of theater and into recovery quicker than they expected and we only had a short stay in intensive care before being moved to the ward.

She has been having some troubles with post surgical fevers and they've done xrays and blood tests and so far everything seems to be ok... our biggest hassle is pain relief. They have her on some pretty hefty doses of morphine as well as paracetamol and some other stuff and none of it seems to be making much of a difference.

It's horrible watching her because she doesn't settle, she doesn't sleep, she doesn't want to eat, all she wants to do is to cry and fuss and scream.

The acute pain management team has been called in again and we're waiting for them to come and see if she can be given more, or something else that may help her calm and sleep.

They managed to use most of the incision points from the last surgery so she only has one new scar... which is a good thing for her, although somewhat superfluous considering how many other scars she already has on her poor little body.

But, all in all, I am really pleased with the position that she is in now... it is a hundred times better than what we had anticipated!

Now we just have to wait and see if she keeps up the amazing work!!!

The Terrible Twos

Being a mother to both 'normal' healthy children as well as a child with complex special needs, it gives me a bit of an insight into a world that can sometimes be very confusing and very confronting. I must confess that it is somewhat heartbreaking when I look at Nicola, who is now 2 years, 2 months and 11 days old...

I can't help but to compare her to Isabella, who at that same age, just last year, was astounding hospital social workers with her vocabulary skills, her ability to count, recognise colours, recite nursery rhymes and hold conversations with anyone around her... who could run and jump and skip and hop and dance...

And then I look at Nicola, who is non verbal and immobile.

She tries, I know she tries... she has audible sounds that she makes, some of which possess wordlike qualities and intentions, some of which are just babble... and she has her Makaton... she communicates effectively with us, because as her parents, we know her best... but the second anyone else is around, she clams up and goes back to her preferred method of communicating with the outside world...

Crying.

But, then, at the same time, there are moments that I am utterly thrilled that Nicola is who she is... like when her big sister Jessica, who is now 4.5 and quite the little Miss, gets her attitude on. She's taught Isabella well and when the two of them mouth off at each other, I can't help but to look at Nicola and smile.

There are times when I am grateful for the fact that she is developmentally delayed... I can revel in the knowledge that she will always retain a little bit of her innocence... that she will always be my sweet little baby girl...

And on those days, every now and then... she likes to surprise me.

Having a particularly bad day with the big girls who were tired and cranky and fighting each other, as well as fighting me, at every possible opportunity, I must confess that I was relieved that Nicola had woken up from her nap. I put ABC Kids on for the big girls and left them to go square eyed for a little while and went into her bedroom, scooping her up from her bed and smothering her in kisses, savouring the sweetness that is my beautiful little baby girl.

Bringing her out onto the lounge, I laid her down on the couch and sat down with her to have a chat and some tickles while changing her nappy, as we always do... and immediately she flipped over onto her side to watch The Wot Wots with her sisters.

I turned her back onto her back and within a second she had flipped herself back to the tv again.

I said to her; "Excuse me, I'm trying to talk to you!"

Her response?

She cast me the most withering look you could possibly imagine and immediately held out her hand.

Her communication was clear.

"Stop."

I guess it just goes to show several things...

* A mother can never lure attention away from The Wot Wots...
* Attitude can assert itself at any point...
and finally...
* Even developmental delays aren't enough to keep the terrible two's at bay!

Sleeps Not So Sweet.

So... Nicola finally got her sleep study...

What can I say?

Other than... not at all what I expected!

We flew down that morning and transferred across to the Mater Childrens Hospital where we did all the admission stuff and sat down and spoke with the ENT specialist about her syndrome, her medical history etc.

At 4pm they gave us an hour of reprieve so I was going to run across to Subway to grab something to eat, but I ran into her paediatric surgeon in the hall who wanted to talk to me about Nicola's hernia and the surgery she needed for that.

Thankfully I did manage to grab a quick bite after talking with Craig otherwise it would have been a REALLY long night!

At about 5.30 we gave her a bath and they hooked her up to all the monitors and then I put her into bed.

Honestly, I didn't expect them to find much of anything... she had a BEAUTIFUL night's sleep! If she slept like that at home I would be a very very happy Mumma! I even rang my husband at home and told him that she was sleeping so well... no snoring, no gasping or choking, nothing... just a nice night's sleep!!

The next morning, after *I* tossed and turned all night long, the ENT specialist came in and had a chat with me.

I told him that she had had what I thought was a brilliant night and how it was so typical of her to have a good night's sleep when I'm trying to prove how bad she usually is.

He was amazed.

Medically, her sleep study was a disaster. He said that in the 12 hours she was connected she achieved less than an hour and a half of actual deep sleep. She stopped breathing on average of every 3 minutes or so, and through the whole night, her entire oxygen saturation levels rarely rose above 80% and she had constant nasal obstruction.

He thinks her tonsils are far too big and are obstructing her airways through the night and that her adenoids are permanantly blocking her nasal passages.

For the first time ever I have been taken completely and utterly by surprise when it came to the results of a test. Normally I have been the one pushing for testing because I felt there was a problem, but this time I was sure they wouldn't find anything!

So now the grand plan is to go back to our ENT specialists at the Royal Childrens and get her put on the waiting list for T&A surgery. After the surgery has been done they will give her a few months to recover and then do another sleep study and see if there has been some improvement. If there hasn't, then they will have to refer her to other specialists for more tests to be done.

*sigh

I am the child...

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Author Unknown.

I will love the light...

Since Nicola’s birth, I have found that in the moments that I need the reassurance and comfort most, it comes. Usually from the strangest of places, but it comes. When we first got her diagnosis, I was sitting at my computer one night, trying not to cry as I tried to write my first introduction to the support group mailing list… and the mail icon appeared on my screen telling me that there were new items in my inbox. One of them was one of those random spam letters. Most people with email know the ones I mean… they have a random convergence of bizarre words and quotes amongst them which are supposed to get them through SPAM filters?

Well, this one appeared and the first line read; "I will love the light for it shows me the way. Yet I will endure the darkness for it shows me the stars..."

That has been something of a mantra for me since I started on this journey. I love the light, it shows me where I am going and where I have been… but in the darkness there is a beauty that you can’t see in the light. Sometimes you need to look a little harder to find it… but it’s there. Maybe it’s in the form of an unexpected friendship, or a once in a life time opportunity, or a trip, or something. It might be taken under the cloak of darkness, but there is beauty there if you look for it.

But, on the flip side… sometimes the light is just downright harsh and you find yourself wishing for the cover of darkness to shield you from the things that you don’t want to see.

Like just how unfair and how unjust this life can be sometimes.

Our most recent endeavour has been to try and source funding to buy Nicola a wheelchair and a standing frame.

Well… seriously… with how difficult it has been, you would think I have been asking to have the moon repainted to purple!

Weeks of phone calls and appointments and talking to people until I’m blue in the face… explaining the same story over and over and over, until it gets to the point that you just want to carry around a voice recording and press play.

But where I’m really starting to fail in understanding is the way that funding is allocated.

See, to me, in a utopian society, it would be simple. Funds for services/equipment/needs would be allocated on a ‘needs basis’. It would make it really simple. If you have a genuine need for a certain piece of equipment or a certain service, you would say “I need this.”

Then they would look at the justification, nod in agreement and say, “Yes, you need that. Here is the funding to cover it.”

Of course, I understand that it wouldn’t cover every need, but rather on a ‘greatest need’ basis.

Which is why I struggle so much to understand how it is that certain individuals with widely known conditions are able to get funding for items like iPads, while other individuals with differing conditions, struggle to get even basic access to funding for life essential items, like a wheelchair.

I really, simply, just don’t get it.

It’s almost like the popular kids are getting the cool stuff, while the rest of them are begging for the dregs that are left over.

I guess it’s just another way to prove that we don’t live in a utopian society, but rather a dysfunctional capitalist society. S/he who has the dollar has the power.

And this is so painfully and abundantly clear in our medical system. It truly is user pays system for anything that comes even close to resembling quality of service.

The bleached blonde barbie up the street with more dollars than sense can go book herself in for a new set of boobs or a new nose, or hell, even longer legs! She can get it done as early as next week if she pays enough for it…

All the while, sick, frail, disabled and elderly are suffering and even dying from lack of access to proper medical care. Waitlists are horrendously long, services are inaccessible and support is almost unheard of… and politicians really just don’t care. And it’s something that will never change.

So yes… sometimes the light isn’t all it’s cracked up to be. The light can make the days seem impossible to deal with… can make targets seem impossible to reach… can make everything seem that much harder to deal with, that much more isolating and that much more lonely… and makes it seem even more apparent that there are very, very few people in the disability services sector, especially those creating the red tap who possess an iota of common sense or understanding!

So that’s my whinge for the moment. But I just need to remember, that it doesn’t really matter. In the grand scheme of things, it’s just a little setback and it doesn’t really change that much. We will accomplish what we set out to achieve because we are determined and we will get what we need because we have to. That doesn’t change because a couple of politicians somewhere are idiots. Sure, it makes it harder, but it doesn’t change anything.

We will succeed because we our daughter depends on us.