Communication

Being the parent of a child who is both medically fragile and has special needs, it is sometimes really hard to see the silver lining in life. While some days things are great and you can smile and laugh and almost feel like a normal person, other days you just fall into a well of confused self deprecation where it seems there is no end in sight to the monotony and drudgery that has become your life.

It makes it all the harder when you are constantly seeing reminders of the life that you're missing out on... family and friends with their 'normal' children who are running and babbling and playing... and it really drives into your heart that your child is just not the same as other children.

Last Friday for instance... I found myself babysitting my niece and my two nephews. To put this in perspective, my niece is 8 months older than my oldest child. My oldest nephew is 4 months older than my middle daughter, and my youngest nephew is 4 months older than Nicola.

Given their close proximity in age it's only natural that the children are all friends and play well together... that is, all except Nicola.

Where my nephew is off running and playing with cousins and siblings, babbling away, eating everything in sight and generally just being a totally typical terrorising toddler, Nicola is completely immobile. She doesn't even sit unaided. She doesn't talk, she doesn't walk, she doesn't run... and the limit to her interaction is, or at least it was, crying at anyone that so much as breathes in the same hemisphere as her.

Seeing him, and every other toddler around us, meet their milestones, take their first steps, say their first words etc, while we struggle to achieve even the tiniest of tiptoes forward is, to say the very least, heartbreaking.

Don't get me wrong, I don't begrudge their happiness with their healthy children. Not at all! And while I wouldn't give Nicola up for anything in the world or change anything about her, I wouldn't wish this kind of life on anyone, least of all on the days that the silver lining has gone an ugly shade of black.

But every now and then, through the darkest, cloudiest and most miserable days, children like Nicola have this way of surprising us... just when we need it most.

About a month ago we had a massive breakthrough in her communication... she looked at me and she said "Mum. Mum, Mum, Mum." Of course, to say I was ecstatic was the understatement of the century... until we told her speech therapist who heard a similar sound and told us that it was just a random convergance of sounds made as she chewed on her fingers... and it wasn't really a word at all.

One step forward, two steps back.

Sigh.

But then, last week, something amazing happened. It was clear, it was concise and it was almost precise. She picked up her hand and she waved.

Ok, so she's almost two. I get that... waving for a two year old isn't a big deal...

But for MY two year old, it's a mammoth step! It's phenomenal! It's more of an achievement than man's first steps on the moon or the discovery of the theory of relativity.

MY two year old daughter waved! She picked up her hand and waved! She communicated with me!

Between the tears I waved back, delighting in the furious little movements of her hand pummelling up and down and the gorgeous smile on her face, the pride in her own achievements mirroring the pride I had for her.

Thinking quick I whipped out my phone and started the video recorder, getting a gorgeous clip of her waving and smiling at me. Then, just was I was about to stop, she did something else.

She responded to my waving to her by signing 'good waving' to me in Makaton.

She used her finger instead of her thumb, and it wasn't entirely as precise as it could have been, by the message was so clear even my father knew what she was saying. "Good waving Mum. I'm proud of you!"

In Loving Memory...

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

God looked around his garden and he found an empty place,
He then looked down upon this earth and saw your tired face.
He put his arms around you and lifted you to rest.
God's Garden must be beautiful, He always takes the best.
He knew that you were suffering, He knew that you were in pain.
He knew that you would never get well on earth again.
He saw that the road was getting rough and the hills were hard to climb,
So he closed your weary eyelids and whispered
"PEACE BE THINE".
It broke our hearts to lose you, but you didn't go alone,
For parts of us went with you the day God called you home.

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

In Loving Memory of Willa Clementine Hunt

An incredibly brave little Costello Princess who grew her Angel wings at the age of 2.

09-07-2010

Rest In Peace Princess
xxooxx

Take This Moment...

Ok, so, again, I am just soooo not good at keeping on top of a blog. I think I have to accept the fact that I will never be one of those people who write something here every day. We have had so much happening of late... the last month or so has just been utterly chaotic.. but I will talk more about that later... maybe.

Right now, I want to talk about a friend.

This friend probably isn't what a lot of people would consider a friend. I have never stood in the same room as her, nor have I heard the sound of her voice. I have never held her hand or hugged her, I don't know what sports she follows or what music she listens to, but we share a common ground that is so deeply entrenched in our hearts and souls that none of that seems to be very important.

We both have daughters that are HRAS positive.

Our precious daughters are almost the same age, they even share some of the same traits... the same gorgeous smile, the same big eyes and the same sunny outlook on life... but that's about where the similarities in our lives end.

Tonight, as I watch my daughter sleeping in her bed and reflect on how far we have come and how far we have to go, my friend is watching her daughter sleeping and reflecting on the fact that her life is nearing an end.

You see, my friend's beautiful, precious little girl has cancer that cannot be treated and they have made the heart wrenching decision to let nature take it's course.

I cannot even begin to fathom the immensity of this decision, or the emotions that they struggle with on a daily, or even hourly basis, yet she does it with poise and grace. I read her emails and I cannot help but cry because even now, in her deepest hour of need, she is not only a friend, but a teacher, using her own pain to help guide others on this journey.

And with such a good and gracious person as a teacher, how can I not be a student?

Indeed, from her words, I have learned a great many things, some of which I already knew that have been reinforced in my heart, and some which are new words of wisdom that I am holding fast to.

I have been reminded that every moment is precious. We never know that is just around the corner. It is time now to hug my children, play with them, make them smile, make them laugh. Revel in the joyousness that is the foundation of new life, spend time with my partner and just delight in the little things that make us both smile.

I have learned to appreciate therapy and medications and doctors visits and all of the other stuff that comes with this life that I have had thrust upon me, for even though I may curse these things for being the bane of my existance on a day to day basis, but each time I curse these things I am also reminded that I have her in my life. I may despise therapy, but every day we do it is another day that I still have my daughter.

I have learned that even in the face of adversity that may seem impossible to overcome, I will find a way to get through. I have the strength and courage of a family with wisdom that spans half a century and encompasses the face of the globe, all of whom will be standing with me when I need them.

Nicola and her medical complexity may have turned my life inside out and upside down, and it may have challenged everything I ever thought I knew in my life, but it has also brought me friends and family who have become an important part of my life.

I may not see them every day, or even every other month. I am lucky if I see some of them every other year. I may not know their faces or hear their voices, but they are still in my thoughts every day. I laugh with them in their moments of happiness and I cry with them in their moments of pain, but most of all, I am just thankful that I have them as friends.

Now... with that, I have three sleeping children, medication has been given and feeds are up to date... so I am going to go and enjoy a few moments of precious sanity, savour a nice warm shower in this faux winter and then curl up in bed with a good movie and enjoy some nice spacious sprawl time before all of my off spring end up in my bed, which will be in about two hours and thirty seven minutes, give or take a few seconds.

But I leave you with this...

Take this moment and own it. Cuddle your children, kiss your partner, eat that piece of chocolate, and revel in the small things... don't take a single moment forgranted, because you never know what tomorrow will bring.

<3

The Emotional Roller Coaster

When you have a child with special needs, there are a lot of emotions you feel. You feel grief at the child that you have 'lost' and you feel anger at the powers that be for this predicament in your life. You feel resentment toward those with 'normal' children, even if you have said 'normal' children yourself... you feel sadness, happiness, isolated, lonely, afraid, confused...

I guess the same can be said for having any child, whether they have special needs or not... but the big difference is that when you have a child with special needs, you usually feel all of these emotions at once... and they conflict and battle within, trapping you in a hair raising, spine tingling emotional roller coaster as each emotion battles for ultimate supremacy.

When you have a child with a rare condition that is considered life threatening, it feels like each one of those emotions is intensified a thousand times over.

We become hardened and battle weary, at least to the outside observer. We hide our scars along with our tears behind a false facade of determination, yet behind every smile and laugh, there is always that little bit of doubt, that little fear... that little voice whispering in the deepest, darkest recesses of your mind where only your worst nightmares dwell.

I remember when Nicola was 3 weeks old. We had done our journey in NeoNatal Intensive Care Unit and Special Care Nursery and we were being discharged to "Parentcraft" for 24 hours of observation. This strange ritual was allegedly to make sure we were capable of parenting a baby before being discharged, something I found somewhat ludicrous considering that I already had two other babies at home waiting for me.

We were sitting in Special Care Nursery and they were doing her discharge assessment and then Dr Az turned around and told me that he thought she had a heart murmur.

Well, that was it. I broke down and I just sobbed. My baby had a heart murmur, she had a defective heart... after 3 weeks of all tests coming back 'normal' or with nothing found that to be told there was actually something wrong just shattered me, and really, in the grand scheme of things, it wasn't even something overly serious!

Oh how we change...

Since then we have endured countless more diagnosis', not to mention surgeries, and procedures. I have held my daugher as she battled at the brink of death, I have fought doctors who didn't believe in her, and I have seen her defy odds and create miracles that no one can explain to me...

I have experienced a level of intensity of my own emotions that I never knew to be possible... an intensity so totally overwhelming that it is actually terrifying.

I have laughed when I wanted to cry, I have cried when I wanted to scream, I have held fast to hopes that seemed impossible... and I have lived with the mantra, "There but for the grace of God go I!"

If I could take everything I have learned in the past 18 months and turn it into one statement to give to any one who is about to embark on this journey, it would be simply 'do not be afraid of the darkness'.

No matter how dark moments of my life may be, they are only moments, and those moments shall pass. There is always a light to look toward...

"I will love the light for it shows me the way.

Yet I will endure the darkness for it shows me the stars..."

With Love...

Tall Poppy Syndrome

Since the days of the infamous Aristotle etched his thoughts on parchment, Tall Poppy Syndrome has been documented throughout history. Given that some of you may not be familiar with the concept, TPS is a term used to describe a social phenomenon in which people with genuine merit are resented, attacked, cut down or criticized because their achievements distinguish them from their general peers.

I've often heard about this phenomenon, and outside obvious celebrity bashing, I had never actually witnessed it in person until just recently.

My husband and I recently dragged all of our children through what can only be described as a voyage into the second circles of hell last week. We took a 5 day trip to Melbourne. Drama's and nightmares and unwitting entrances into what could potentially have been the setting for a new slasher flick, I got to witness my first actual real life act of TPS.

Standing around at the RCH in Melbourne on Sunday afternoon, I was having a discussion about our goals for Nicola, and one of the things I raised was the fact that I was soooo excited about the prospect of being able to go to the UK Conference this year.

I was absolutely flabbergasted when one of the participants of the conversation laughed almost bitterly and responded with "It's nothing more than a Mr X. publicity stunt."

Now, I can't even begin to tell you on how many levels that is incorrect! I mean, I know how much work Mr X. and his beautiful wife Mrs X. have put into this event. And yes, there are one or two aspects of the event that are publicity driven, but seriously, how the hell else are we supposed to raise awareness of a condition so rare that most people will never even hear about it let alone meet someone who suffers from it?

But now, 3 days on from the moment those absinthal words were spoken, I have come to realise that it is a classic example of TPS.

Mr X. is one of those people that you often read about in those heartwarming stories that go out of their way to help others. He was the driving force behind the International Costello Syndrome Support Group and he has been one of the leading forces behind the conferences. He was also the very first person I ever spoke to about Costello Syndrome.

The day I was given Nicola's diagnosis he phoned me from the UK and listened to me bawl down the phone and virtually held my hand while I walked through those tentative first weeks.

He is part of the heart and soul of this group... and his support is invaluable to almost every member.

I guess that I should be thankful that despite the crap, there are people like Mr X. who still put their own needs aside to be there to support others. It's just sad that there are people who seem to delight in attacking and belittling their efforts and really it just goes to show that they are little more than sad, bitter and lonely individuals.

So why would someone want to attack a person as virtuous as Mr X.?

I guess there are as many reasons as there are stars in the sky... but at the end of the day, it comes back down to TPS.

The social phenomenon in which people with genuine merit are resented, attacked, cut down or criticized because their achievements distinguish them from their general peers.

All that aside, it was wonderful to be able to have a few days break, even if it was pure chaos! The girls had a great time, we got to do a couple of the sights and spend some wonderful down time as a family.

The girls absolutely loved going to the Zoo and it was wonderful to finally get a chance to meet up with one of my dearest and closest friends... (Love you Lizzie and miss you heaps!!!) and the girls loved going to Wonderland...

It was also great, although somewhat confusing, to be able to talk to Sue and Bronwyn again.

Though this meeting has now filled me with a lot of questions and a lot more confusion about the state of my daughter's health.

It seems to be the pattern that our lives are falling into now. Every time we get some answers, something else somewhere changes and we become even more confused and frustrated with the lack of answers or information that seems to be forthcoming.

Now, after all of that... I want to end this entry with a totally heartwarming note. Tuesday morning my brother arrived from North Queensland to help us with moving. He is very much a manly man type of guy... and has always been what I think is really a little bit afraid of Nicola because she's always been so fragile...

This morning he was playing with her and watching her respond and interact with him was just incredible... but the heart melting moment???

When my brother turned around and signed 'Good Girl' in Makaton to her.

I <3 my family, and despite everything, today I just feel blessed.

A Moment of Sadness.

Ok... so good intentions aside... I really struggle to find time to sit down and write stuff here... and when I do finally get all the girls into bed and medications and feeds done and everything under control, I have hundreds of ideas of things that I want to write, but I struggle to find the words to write everything down.

Tonight I need to write something because I have so many thoughts rushing through my head that they're starting to jumble and crash... so it's time to put some out in the open.

So... anyway... here goes.

On Friday night Nicola got rushed into emergency theatre to have a shunt revision done. Nicola has a Programmable VP shunt inside her head. In laymans terms there is a catheter that goes into her brain and drains spinal fluid into a reservoir. The reservoir then drains fluid down through a valve into the cavity around her gut which is then reabsorbed by her body. The idea is that it is supposed to remove the excess fluid from around her brain and relieve the pressure around her brain.

So anyway, Thursday night we noticed that the site around her shunt on the back of her head was looking a bit squidgy... Friday morning we phoned the neurosurgeons to ask for advice... Friday afternoon she had a shunt series done to check the status of it and Friday night she was in theatre.

It was a bit overwhelming... but then again I am starting to get a bit used to this. My husband found it funny... every time anyone asked him about our plans for the weekend he responded with some quip about just popping up to the hospital for a spot of last minute neurosurgery... like it's no big deal or anything... you know, we may as well have just popped down to the local shops for how blase he was being about it all.

But this is our life, and we are adapting quickly. We are resilient, we have to be for our other children.

Anyway... this is where the real point of my post tonight starts.

Saturday night I get around to checking my email and find an email from one of the other Costello Syndrome Support Group Mothers, letting people know that her son had passed away.

He was 27 years old. He wasn't unwell, he wasn't in hospital, he hadn't had surgery... he just passed away. They think it was his heart.

It was a simple email, just one line... but it shattered my heart.

This hasn't been a good year for the Costello community. Willa has terminal cancer... she's only 2. Joanne passed away from complications from routine surgery... she was one of my dearest friends and she left behind two beautiful little children (one with very special needs) and a loving husband. Now with the death of Bret...

I feel like every other email that comes over the support group list leaves me in tears... the sad thing is, that no one in my real life understands why or how I can get upset over people who are virtually strangers.

To me, these people aren't strangers. Some of these people I have never met, some of these people I have met once... but still they are part of my inner circle... my nearest and dearest.

No matter where I look in my real life, there is no one that understands what we are going through on a daily basis. They don't understand the constant fear, the constant admsisions, the health problems, the medical complications... they don't understand the pain and the torment that becomes part of our daily lives...

We recently attended a support group meeting that was organised by one of the local disability services groups for families dealing with rare conditions. There were 4 families there... and out of all of them, no one understood what kind of life we were living. They haven't had the ongoing admissions or medical complications that seem to plague our every day lives.

And then there is my Costello Family.

While they don't necessarily deal with every single thing that we deal with, as a general rule, they understand. They get the babies that cry almost constantly for no reason... they get the feeding problems and the failure to thrive and the metabolic and endocrin problems and the gastro problems and the heart problems, the fear of cancer, and the combination of all of the above...

And they understand the isolation of dealing with a condition that no one else has heard of or understands.

We went to a cardio review last week and there was a new receptionist. While we were waiting to be checked in I glanced over the pamphlets sitting there and saw one for autism and one for downs syndrome, both talking about support groups and what help is available.

No one has heard of Costello Syndrome.

But my Costello Family understands, because they are living the same life that we are living. They are my light, they are my rock... they are my foundations. Without their support, I really don't know how I could get through every week.

That's why I get so upset when bad things happen to my other family. That's why I cry at the heartache of someone who is a virtual stranger... because even though they are virtual strangers, they are my family, and I love them all deeply... even the ones that I disagree with!

But beyond that, there is also the fact that it makes me question a lot of things that I try and push to the back of my mind... like the fact that there but for the grace of God go I.

And it sounds sooooo shallow and self absorbed to say that, especially in light of everything that has happened... but regardless, I feel it.

It could just as easily be my daughter, my family... and that thought tears me apart. I hate even thinking about it, but I can't help but think about it when the reminders are constantly there. One bad news email after another, one complication after another... every day there are reminders that our lives are just totally not 'normal' and that's ok... but every three months comes the slap in the face that reminds us just how bad it could be.

But at the end of the day, when I still have my daughter here, no matter how bad a day I might be having, what right do I have to complain when there are clearly others who are so much worse than I?

At least tonight I can still go and kiss my children goodnight...

A Little Lightheartedness

We all have to start somewhere, right?

So I figured I would start this out with a little bit of a light hearted post... so, here are a few random little facts for you.

Did you know that we have:

* 1:576,000 chance of being struck by lightening
* 1:7000 chance of being considered possessed by Satan
* 1:88,000 chance of dating a supermodel
* 1:117 chance of being on a plane with a drunken pilot
* 1:60,000 chance of striking it rich on Antiques Roadshow
* 1:20,000,000 chance of being named a Saint
* 1:3,000,000 chance of spotting a UFO
* 1:10,000,000 chance of becoming president of the USA
* 1:215 chance of dating a millionaire
* 1:220 chance of writing a New York Times Best Seller
* 1:3,800,000 chance of winning First Division Lotto
* 1:28,000,000 chance of having a baby diangosed with Costello Syndrome.

“Success is not measured by what you accomplish, but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds.”

<3