Farewell 2010

A Moment of Reflection.

Well... 2010 is almost over... and looking back, it's hard to believe we have had such a HUGE year... and how much things have changed.

We are finally getting a handle on her health care... we have a wonderful paediatrician who is not only available to us when ever we want/need him, but he is willing to listen to us and work with us... her therapy teams seem to be pretty on the ball with things, and all in all, things are moving forward.

It's comforting, considering that at the start of the year the decision to move back home was made more on a basis that her health care certainly couldn't get any worse than what she had in Brisbane...

It's great seeing Nicola opening up to new people and allowing more people into her circle, even if they are only family. She is finally opening up to my Dad and willingly lets him hold her now... a far cry from the child who, a year ago, wouldn't even let anyone else look at her.

I can only hope now that next year is even half as kind to us as this year has been!

Farewell 2010... Welcome 2011!

A Scrooge Moment...

I am discovering that I seriously hate this time of year... it is nothing but a constant reminder that my daughter is not like everyone elses. Every day is a new slap in the face, and I hate it.

I hate it, I hate it, I hate it, I hate it!!!

I have spent 8 weeks trying to find something for Nicola for Christmas. I was lucky and scored some new clothes for her on sale, which she desperately needs... but looking for that really awesome Santa present... and nothing is suitable! I don't want to buy her 'yet another' baby toy because she isn't a baby! She's nearly two and a half years old dammit! I don't want to buy her another rattle, or another teething ring, or another stupid play mat! I want to be able to buy her something that has a bit of wow factor... instead, the best that I can come up with is a Big Red Car to go with her Wiggles toys that she loves...

And then, on top of that, is the constant need to keep reminding family members of what she can and can't use, again highlighting over nad over that my child is different to my nieces and nephews. My sister wants to buy her a jolly jumper and doesnt' seem to listen to me when I tell her that Nicola's hips are not stable enough to put her in a jolly jumper! That's why we had to stop using her bouncy round about thingy! The pressure on her hips was too much! Not to mention the fact that she doesn't have enough control over her body as a whole to use the damn thing, least of all on the trampoline where she expects her to use it!

And don't even get me started on the Christmas parties... I mean... to start with, there is the fact that I am constantly being asked questions about why she's so small and why she doesn't walk yet and why she doesn't talk yet and why she isn't like her siblings or her cousins... then, on top of that, there is the fact that everyone insists on scheduling their Christmas parties at night.

Nicola is in bed by 5.30pm! I have tried to explain that over and over but if I say I doubt we will be able to attend, I get made to feel like the worst family member in the world... so out of guilt I end up going, knowing full well that it means an absolutely horrific night for me because I'm stuck in the corner on my own trying to comfort a screaming child who is stuck in cyclic meltdown mode because she has been taken out of her comfort zone and out of her routine, not to mention that these parties are full of people she doesn't know which scares her, and they're generally noisy, which makes her head ache. Plus it is insanely hot and humid here and her poor little body just really cannot cope with the heat at all...

Then I have to put up with people talking about how she cries so much and she is not the bright and happy baby that her sisters were... Well, newsflash... WTF do you expect?!?!?!

When we finally do get her home, she's so out of whack that the few hours of misery we spend at the party means that she is completely beside herself for days afterward!

I am sick of it! I don't want to do Christmas any more!!!

I normally love Christmas, I really do! I love the whole season... but this year, I'm just over it. I am over the constant reminders of how different my life has become. I love my daughter, I wouldn't change her for the world... but this Christmas is just making me totally and utterly miserable.



Christmas really does bring out the worst in people! It is certainly bringing out the worst in me!

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.

Another Amazing Experience.

We have been extremely blessed in our lives in so very many ways, but at the moment, the most poignant to us is that we have the love and support of family and friends which has allowed us to accomplish some amazing things for our daughter.

When we were first given Nicola’s diagnosis, I felt that my world had been shattered… I couldn’t even talk about her without dissolving into tears and if anyone asked me about her diagnosis, I just couldn’t handle it. It was too much.

Then we made the decision to go to our first conference, which was an incredible 10 weeks after we got given her diagnosis. After two weeks of procrastinating and crying and deliberating, we came to the conclusion that if we were to accept our daughter’s diagnosis and her future (what little we knew of it), then we would have to go to the conference, we would have to do everything that we could to get our daughter there to the people that knew best.

With 8 weeks to go, we turned our appeal public, starting with friends and family and ending up in the local media… and we succeeded. In 8 weeks we raised enough funds to cover two adults and one child to fly to San Francisco, spend a week at the conference, pay for our accommodation and meals and everything, and then come home.

The trip, although incredibly stressful, was extremely successful. The experience was absolutely amazing, and one that I firmly believe not only helped us on our path of discovery for her daughter, but in fact saved her life.

We learned several things during that conference, one of which was that Nicola actually had a clinical diagnosis of a Chiari Malformation which, apart from causing her constant and chronic pain, it was also affecting her breathing and her feeding and pretty much every other aspect of her life.

The sessions that we attended with the conference and the connections that we made gave us the power to return home and fight for better healthcare for our daughter.

But beyond that, it gave us a chance at social inclusion… to stand with people who understood and shared our journey.

We were lucky enough again this year, through the help of some amazing friends who helped us fundraise, and the Grace of my Father in Law who got us over the line at the 11^th hour, to be able to attend the first annual conference in the UK and the launch of the new international Rasopathies support group.

While again it was only a few days, it was a few days that have once more changed our lives. From a medical perspective, we had access to specialists and doctors that we had never met before who have had many years of dealing with Costello Syndrome in the UK, who were more than happy to sit down with us, one on one, and discuss Nicola and her health and her options. We learned about drug trials that will most likely be beneficial to stabilising some aspects of her health, and improving others. We learned a whole bunch more scary statistics and facts about our daughter’s future, some stuff that we didn’t necessarily want to know just yet, and some other stuff that is great to know, just to keep in mind when things happen and we need it, stuff like muscle contractures, tight heel cords, cardiac problems, neurological problems, skeletal issues, growth hormones, etc.

We got to spend ages talking to a mobility specialist and found out what kind of wheelchair we need to get for Nicola, so now all we need to do is to find the funding to buy one for her!

We also got to spend a few more days with the families who are walking this path with us… some of whom we had met last year in San Francisco, and some of whom we knew only over email. It was great to be able to put faces to names and meet some more wonderful children… it was also great to meet some of the other Rasopathies families (Rasopathies are other syndromes that are related to Costello Syndrome and come under the same neuro-cardio-facio-cutaneous syndrome banner. Many of the symptoms and treatments overlap. By grouping them together under one Rasopathies banner it increases the numbers and makes them more viable to researchers and for funding etc).

Nicola (and us) were invited to a lovely high tea at the House of Lords overlooking the River Thames which signified the launch of the new support group and we talked about the future, and we even managed to fit in a few hours of sight seeing in London!

All in all, it was another amazing experience, and one we are truly very lucky to have received, and one we are very, very grateful for. These experiences give us the strength and knowledge to fight for our daughter’s medical needs, as well as the social interaction to abate the loneliness and isolation that comes with dealing with such a rare and daunting medical condition.

We wouldn’t be able to do this without your support… so thank you.

From the bottom of our hearts, thank you for the opportunities you have helped to give to our daughter.

Today is your Birthday...

My beautiful daughter…

Today is your birthday…

For two short years you have graced this earth with your presence... for two short years you have filled our hearts with a love that we never knew was possible… for two short years you have brought us light in the darkest of moments and hope in the ravages of despair.

If I could take away your pain and make it my own, I would. If I could fill the world with happiness, I would do it for you. I would walk to the ends of the earth and back again to make even an iota of difference in your life.

In the past two years, you have taught me more than most people learn in a life time. You have taught me, hope and faith… you have taught me compassion and understanding… you have taught me strength and humility… and you have taught me love.

Today is your birthday.

The anniversary to celebrate the day in which we received one of the most precious gifts we could ever have been given…

The gift of you in our lives.

Oh how I wish I had known…

Two years ago today I was told that I was going to be having my baby in 24 hours. I was 34 weeks and 6 days pregnant. The radiographer and the obstetrician both assured me that the baby would be fine… after all, she was almost 11 pounds.

What could possibly go wrong?

Oh how I wish I had known…

I wish I had known that minutes after my daughter was born she would have a seizure and stop breathing. I wish I had known that the next 8 months of our lives would be utter chaos and turmoil as we flitted from one specialty to another, one admission to another, one complication to another, before everything culminated in a diagnosis that rocked the foundations of our world.

I wish I had known then how drastically our lives were about to change… that I would never again feel like a competent and able parent when it came to my daughter… that I would sacrifice everything for a better chance at life for her… that my older daughters would miss out on a normal childhood… that I would become an expert in medical conditions that I never knew existed, and had no desire to know about…

Oh how I wish I had known…

While in hindsight I probably wouldn’t have changed anything, perhaps it would have made me a bit more prepared… for the constant battle to gain access to a health system that seems to constantly shut us out… for the heartbreak I would come to feel as I cradled my daughter as she screamed from a pain I could not ease… for the loneliness I would feel as I walked this path, virtually alone… and for the fear I would come to feel every night as I fell asleep wondering if my child would wake the next morning.

Yes… two years ago today, I was told my life was going to change. I just had no idea how much.

Now… on the eve of Nicola’s second birthday and I look back over the past two years, and I can’t help but marvel at how far she has come. She has survived odds that have seemed insurmountable. She has lived with complaints that drive grown adults to tears, yet she does so with a brave face and a smile, because in her little life she has never known any different.

I watch her interact with her sisters, laugh with them, touch them, play tea parties and ponies with them, and I can’t help but smile. I watch her signing ‘hello Daddy’ or ‘hello Mummy’ and it fills my heart with happiness that I never knew was possible.

It is so confronting, seeing other children her age, or even seeing her sisters, and knowing that Nicola will never really be like that… but Nicola is… well… she’s Nicola. Nicola is different, and that’s ok… because that makes her who she is.

And who she is... is perfection incarnate.

<3