Someone Else...

You know those things that happen in life that happen to other people? Those awful, heartbreaking, gut wrenching things that just leave you feeling utterly lost and confused and wondering why it could possibly happen???

Those things that you never have to worry about, because they only happen to other people...

Well, those things seem to be happening a lot in my life lately.

I can't really explain it, but for some reason I guess I just had thought that with everything we have been dealing with with Nicola that the rest of my family would not have to suffer... after all, how much hurt and heartache can one family endure???

So last night I left my 3 year old daughter having her chemotherapy in Brisbane (with her Daddy, not alone!) so I could hold my sister's hand as she brought her precious baby boy into the world...

A baby who has been so loved and cherish, so longed for... a baby boy who was desperately wanted...

A baby boy who we were told two days ago had passed away in utero from unknown causes.

I can't explain how I feel except to say I am numb. I really, truly, genuinely believed that I would be the first, and only, in my family to bury a child... that my sister would be spared the heartache of loss... and this is just so senseless, so very meaningless.

If it were Nicola that had passed, at least it would be somewhat expected. She is a sick child, she has been unwell and medically fragile her entire life. She has cancer, she is battling odds higher than the tallest mountain... but this little boy, he didn't even have a chance to make it into the world.

He never drew a breath or smiled a smile... he never cried or laughed... but he is oh so very, very loved... and oh so very, very perfect.

This afternoon I stood and watched as this precious little boy was blessed by the Priest, and even though his words were meant to be comforting and reassuring, I found myself standing there thinking that I was right two days ago.

God is nothing but a vindictive prick who gets his kicks out of the misery and suffering of the many.

I know that I am supposed to hold fast to my beliefs, I am supposed to believe there is a reason behind everything and one day that reason will become clear...

But what possible reason is there for this to happen?

What reason is there to continually make a little girl suffer more and more??

What reason is there to take a much loved and wanted first born child from a mother and father who desperately wanted him and did everything right?

How is it fair that there are women out there who smoke, drink and do drugs through their entire pregnancy and give birth to normal, healthy babies, yet mothers like my sister, or even myself, who don't drink, don't do drugs, don't smoke and don't do anything wrong end up being penalized?

I know that there is so much more to it than that, but there shouldn't be. It should be simple. Good people should not have to deal with bad things. Good people should be blessed with happiness, not pain and heartache and suffering.

I guess today I am just feeling raw and emotional and so very very hurt and angry at the world in general...

But the world doesn't care...

The world still keeps turning...

clocks keep ticking...

people keep moving about, doing their own thing... completely oblivious.

Oblivious to the anger...

Oblivious to the pain...

Oblivious to the heartache...

After all...

Things like this don't happen to normal people...

They happen to 'someone else'.

2012 - A New Year.

Well.. we are three days into the new year, and so far, I must say, I'm not really all that impressed.

New Years Day Nicola was so unsettled and miserable that none of us got any sleep. Her breathing is just absolutely awful at the moment, so much so that people coming to my house generally get quite shocked when they hear her. She sounds like she is constantly struggling to breath, her stridor is awful!

The leading theory is that she has vocal cord paralysis from one of the chemo drugs, which is affecting her breathing, her swallowing and her voice.

Her pain is finally under control, or at least, we think so. She still has some moments where she is really unsettled but they are fewer and further between now... but, then again she is on enough drugs to knock an elephant on it's backside, so I'm not really all that surprised.

It's hard to believe that we are now two months into our journey. We are very nearly at the first restage. On the 30th we fly to Brisbane for the MRI to be done to tell us what is happening with the tumor and if the chemo is working.

Looking back, I suspected the tumor before anyone else. I read too much into something her pediatrician said and I went home with the sinking feeling that they were going to find a tumor... and it turned out I was right... but that premonition or whatever it was gave me time to dwell on the news before it was even given to us, a chance to gather some strength before we were thrown into chaos, and I think that was partly what got me through, the fact that I wasn't totally taken by surprise...

But now, in the lead up to her first restage, I have this sickening feeling that they are going to tell me that the chemo isn't as effective as they had hoped. I so want to be wrong, I really do... but I just have this sinking sickening feeling that they are going to deliver another devastating blow and I'm not sure I'm up to it.

In the past three years I've gotten pretty good at hiding my emotions. I've become very adept at hiding what's really going on... put on a brave face, smile and pretend that everything is ok, but over the last two months it's gotten harder and harder.

I keep having what my husband calls 'moments'.

I will be doing something completely mundane and normal and all of a sudden these thoughts will creep into my mind, and I will find myself wondering about the future... and all the things that she may not get to do, and that thought just hurts so much.

Since she was born I've mourned the loss of such a huge portion of her life... but it was never like this. This is like a great big black cloud that just hovers over me, and at the most random of moments lightening will strike and the storm starts to rumble and it's so hard to not just fall to pieces.

There is so much happening it's hard to know what to think and how to feel, it's hard to find a way to balance everything and keep it all in check, but we will have to.

Not for ourselves, not even for our other children, but for Nicola. If she has the strength to keep going, we can't give up.

This is 2012... this is a new start, a new year...

This is Nicola's year.

Dear 2011

Dear 2011,

I am so very glad to see the end of you. I am glad that you are finally over. You are a year that has just dragged and dragged and gone from bad to worse to utterly horrific.

At the start of this year we sat down with our therapists and wrote our goals for the year. They weren't extensive, but they were the goals that we had been working on, and this year was supposed to be our year.

We saw progress, we saw incremental gains and improvements, we saw her finally start enjoying her therapy and being able to disassociate from the medical extremes and focus on the enjoyment that came from the little bits that we saw...

But no, you couldn't just give us that could you? You had to toy with our minds a bit, play a few little games... and f*** with our emotions.

First the subdural hematoma, then the surgery for her tonsils and adnoids... the behavioural problems, the underlaying pain management that we've never been able to control, the feeding issues, the breathing issues, the neuro issues... then when we finally thought we were good to go, we were given the news that her heart was getting worse.

Given the extensive nature of her heart problems we had thought that that was going to be the worst thing that we were dealing with, everything else was getting better... but no...

Then you had to go and deliver one last blow didn't you... you couldn't just disappear silently and let us move on and deal with everything else, you had to go just that one step further...

Cancer... You had to deliver the most final blow you could... you gave my daughter cancer.

I have gone through so many emotions this year, I have been up and down, I have been twisted around, I have been turned inside out, and I am still standing... I don't know how, I don't know why, but I'm still standing... And now it's over.

You're gone, over, finished... you will NEVER return again...

So, 2011... I have two words for you.

F*** YOU!

Sincerely,
Me.

Merry Christmas

The show must go on...

Or so I have told myself a bazillion times over the last few days.

Christmas is such a bittersweet time. There is all the usual joy that we get at Christmas time, the joy of being with friends and family, good food, good drinks, good presents, and just generally a really good time...

But it sucks... it sucks so very very much and it hurts in ways that I cannot even begin to explain, and the presents and the family are the worst parts!

The presents... well, like I said in my last post, there is the horror of trying to buy something that doesn't come from the baby section but is developmentally appropriate for our developmentally delayed child and knowing that you looked at all those same toys this time 12 months ago.

Beyond that, there is the family aspect... I have a nephew who is only a few months older than Nicola, and every year we buy gifts for him and every year he develops and he grows and he moves through milestones and we buy suitable gifts, smiling and trying to be happy and ignore the hurt that our child isn't doing that.

I don't begrudge my brother and sister in law their 'normal' child, not at all. I love him dearly, I love them all dearly, but sometimes it just really hurts that something that is so mundane has been snatched away from me and I just can't get it back again.

Now, add to that the additional pressure that this year had to be extra perfect because I have this nagging little voice in the depths of my mind who keeps trying to rain on my parade... and no matter how hopeful and positive I am, this little voice grounds me and tells me that this may be our last Christmas together as a family.

My daughter has cancer.

My daughter has a rare and aggressive cancer that has spread widely through her tiny body.

I look at it, and I can't see it, but I can see the affects that it is having on her, and I hate it, but it also makes me more determined to make the most of every minute.

So, naturally, seeing as how I wanted this Christmas to be the most spectacular Christmas we have ever celebrated, I ended up as sick as a dog and have spent the last week on the couch, huddled under a mass of blankets and watching kids tv because I couldn't find the energy to get up and turn it away from Dora the Explorer.

Yesterday I emerged from my hidey hole in my blankets long enough to tell my family that if they wanted anything more than what was already in my pantry or my fridge (which pretty much meant olives, gherkins, an abundant supply of chips, mixed nuts... well, you get my drift) then they were on their own.

So our Christmas was far from the splendid sumptuous feast that I had anticipated... we didn't bake in preparation, we didn't decorate every inch of the lounge, we didn't sing Christmas Carols until the old scrooge next door complained... we didn't do anything I had wanted to do...

But we had a good day.

We had the love of family and friend, we were all together, and we had a good day. Thanks to my Father in Law, the girls 'Santa Claus Wish List' was fulfilled... they spent the day eating chips, lollies, icy poles and junk that they would never normally eat, and they had a ball doing it.

Nicola spent most of the day sleeping. Things seem to be really taking it all out of her at the moment. She is having a bad reaction to some of the chemo drugs and has developed some respiratory distress. Her pain seems to be finally under control as they have increased her pain relief in a huge way, but her anxiety is escalating out of control because of the increased level of medical intervention we are dealing with. And just because today she decided she needed a bit of extra attention, she woke from her midday nap with a massive allergic reaction to something and her face was all puffy and swollen and covered in a big blotchy rash.

It wasn't the grandiose day that I had anticipated, but even with misadventures, illness and random issues, it was still a great day...

And now it is over.

All four little princesses are tucked up in their beds, snuggling into new presents, and dreaming of their joyous day...

And I resume my vigil, watching. Watching her move, watching her breathe, watching her sleep.

I hope you have all had a wonderful Christmas, hopefully a lot more straight forward than ours... I hope that Santa was kind to each and every one of you, and I hope that our Christmas' have been filled with love and laughter.

Merry Christmas to all... and to all, Goodnight!

Santa Clause Blues

Christmas is a time for loving and giving... it is a celebration of family, of friends, of love... and of togetherness...

But for me, it is also a massive slap in the face. It is a huge reminder that my child is still different... my child is not like the others.

Last year it was hurtful because I was buying my 2 year old presents that were 6+ months.

This year it is just heart wrenching because I am buying my now 3 year old presents that are targeted for ages 6+ months.

Beyond that there is the constant niggling little voice deep in the recesses of my mind that keeps whispering that I need to make this Christmas something special... because, as positive as I try to be, being realistic, I just don't know how many more of these we will have together.

With that in mind we have made the conscious choice that we want Santa photos done this year. It's not something that we have particularly put a lot of time or effort into worrying about previously because the line ups are just horrific and people are awful and Nicola just generally doesn't like the crowds and the noise and everything.

I thought I would go out on a limb and I called center management and I asked them if it would be possible to book a specific time to go in and have photos done. I explained to them that Nicola is only 3 years old and has very complex disabilities and is now battling cancer and to line up for an hour would just cause her immeasurable distress and would make the photo impossible...

Just trying to relate all the issues she has with society in general at the moment was enough to reduce me to tears and my husband had to take over the phone call because I just couldn't say any more.

Thankfully it turns out that the marketing manager has a wonderfully kind heart and they have organised for us to meet them at center management and they will take us straight to the front of the line so that we can get her Santa photo.

So far I have spent three days looking in the shops trying to find something suitable to give to Nicola for a Christmas present. I needed to get three of them. One from Santa, one from Mummy and Daddy, and one from Grandad Bob.

Everything that would have been considered 'suitable' for her level of abilities we either already have or is pretty much the same as what we already have.

Everything in the kids section is too big for her, and even the stuff in the baby section, most of it is just simply not suitable because of her disabilities.

It hurts to see everyone else running around, merrily plucking toys left, right and center from the shelves, laughing and having a jolly old time, and all I want to do is cry at the unfairness of it all... not unfairness because it's hard for me, but unfairness because it's hard for her. She is so limited in what she can do, and so limited in what she can use and what she can have.

To top it off, because of the last round of chemo, Nicola is due to be neutropenic over Christmas and New Year which means that she will be prone to all infections and bugs, her bones and marrow will be hurting and she will generally just be feeling miserable and utterly crap.

It's hard, we have to try and make the most of everything because we have other children that still deserve everything we can give them for Christmas, but with Nicola and the cancer and how miserable and cranky and pained she is all I want to do is to cancel it and tell everyone to go away...

But we can't.

Unfortunately, it seems, Christmas just must go on.

When it rains, it pours.

Today I finally figured out why I have spent this week feeling so overwhelmed with everything.

Even though we are at home, I have been at the hospital every single day this week.

Monday we had to take her in to have some bloods done to monitor her blood counts post chemo.

Tuesday we had to go back for a review because her blood counts were not what they had expected to find - her white cells were too high, her hemoglobin was too low and some of her electrolytes were off. She was sent home because they wanted to take a minimalist approach in regards to intervention, hoping she would self correct.

Wednesday - we had to do a rushed trip at 10pm for an urgent review because she developed severe respiratory distress and started to turn blue.

By the time we got to the hospital she had improved enough for them to send her home as long as we watched her very very closely because being admitted was likely to be more detrimental given that the ward is full of children with nasty bugs.

Thursday we had to go back for a review after her breathing issues. They decided that it was most likely a bit of a viral infection that was affecting her.

Today, Friday, is chemo day in Townsville. We had to go in early for an assessment by the doctors before they could do her chemo. I was late because it took me ages to find a park after some stupid ignorant moron stole the park I had been waiting for, but that is a whole other rant in itself. The doctor was also running late, which made it ok. Then we had to wait for the treatment room to be available and then we had to do bloods etc, and finally she got the chemo done.

At the same time they have diagnosed her with croup, which is what is causing the respiratory problems. Because her lungs are already compromised because of the metastasis in her lungs from the cancer, any little respiratory bug that wouldn't really bother a healthy child all that much is knocking her for six.

So, now, I have a medically fragile child with cancer, who is already respiratory compromised and has underlaying pain management issues, who now has additional pain from bone/marrow pain caused by the chemo, itching caused by the pain medications she is on, and now a red raw throat and respiratory distress caused by croup.

Poor little mite just can't seem to catch a break at the moment!

:(

Only God Can Understand

Only God Can Understand

My dreams for you are born of faith as I watch you struggle to find your way

They paint a canvas of future hope and the vision of a brighter day

My dreams for you cannot be fulfilled by the efforts of human hands

They are not understood in the earthly realm, only God can understand.

My wish for you is to be the best at whatever you choose to be

To show the world your unselfish love and the joy you bring to me

My wish for you cannot be painted with the words we have at our command

It is not a wish that is made with words, but one that only God can understand.

My prayer for you is to see the world as it was created to be from the start

Filled with love and truth to guide your way as you experience it from your heart

My prayer for you cannot be explained by the greatest minds that fill our land

It is only heard by heavenly ears, for only God can understand.

My love for you does not depend on your abilities or strength to achieve

It is from the deepest part of our souls that our hearts can interweave

My love for you cannot be measured by instruments known to man

It is a love so true that we share in our hearts that only God can understand.