Friday, June 29, 2012


I would just like to say...

For once...

Just for once...

i wish...

Oh my, oh how I wish...

I wish that my 'reality check' would bounce!

This week has just been overwhelming, emotionally.

Nicola is having a bad week, a really bad week. She has had bad pain, and because her hemoglobin is also really low she has been pale, lethargic and looking slightly blue around the lips.

She is due to have another blood transfusion tomorrow morning and really, it's just another slap in a week that has been utterly shocking.

Last weekend one of our beautiful dogs was attacked and ended up in emergency surgery (I am indebt to my vet for the next million years!) and seeing him going out our front door, not knowing if I was ever going to see him again or not, it brought up a lot of complex emotions about life and death and Nicola that I wasn't quite ready to think about then and there.

Couple that with the fact that today my sister finally got all the photos from the birth of my precious angel nephew Krist who was born with angel wings back in January...

And all in all, really, I have spent a large part of this week questioning the fairness of life and the justification for death.

This week I was so desperate for a moment of just sheer normalcy, I took Nicola to the supermarket. Instead of taking her wheelchair, I took a stroller, just like she was any other baby in the market that day.... and we had a lovely time... until some well meaning stranger stopped to look at the baby, and with a look of shock on her face said "What's wrong with her?"

So much for my moment of normalcy!

All week we have had snow stuff coming in dribs and drabs... and given that we live in the hot and humid tropics, that is about as 'normal' as sardines on a cheesecake.

Then, finally, we finally got our itinerary for our trip away, it all arrived in the post today.

If we had ever wanted to try and pretend that this was just a normal family holiday, our 'travel pack' has made that impossible.

Our itinerary arrived inside a purple zip up Starlight case, inside a purple Starlight backpack, accompanied by flashing Starlight wands, Starlight wrist bands and even a Starlight disposable camera.

Everything was a blatant acknowledgement that this is not just a family holiday, this is something organised by Starlight.

This is because our child has cancer.

We are looking at what we need to pack for this trip... Once upon a time, before I was thrust into the world of special needs, I would have chucked some clothes into a suitcase and we would have been great.

Now, I need to pack 30+ syringes per day... plus a dozen different kinds of medication. Because, unlike my other children, she is unable to eat orally, I need to pack all the supplies to ensure that her nutritional needs are met. I need to pack her blankets, her dolly and her elephant, otherwise bedtime will be a complete disaster.

Then, on top of that, I need to ensure that the airline is prepared to deal with her wheelchair. Because we have a stop over in Brisbane, we have to ensure that her wheelchair is available during our stopover as she cannot be safely carried and she cannot be seated in one of their stock standard adult wheelchairs.

We need to ensure that the appropriate tether straps are aboard the aircraft for her child restraint. As she is over the age of two, CASA requires her to hold her own ticket and occupy her own seat, but as she is unable to sit unaided, she has to be in a child restraint... which is why we have to fly Qantas, no other airline will accept her child restraint.

But then, once we get there, everywhere we go, we are going to be the 'Starlight family'.

And to be honest, I think that is one of the things that I think will bother me the most.

If everywhere we go there is that look in people's eyes, that look that says "I know who you are and I'm sorry" I am going to go utterly crazy!!!

I am struggling enough with putting on a brave face for this trip, with being positive and keeping happy so that my children think I am happy... but the first time someone looks at me with that look, it is all just going to dissolve into a horrible mess!

So right now, tonight, I am wishing that just for once my reality check would bounce.

I am wishing that I could look beyond all the negative connotations and all the hidden innuendo's and just enjoy the fact that this is going to be a brilliant family holiday!

I am wishing that just for now I could really truly enjoy everything on it's most simplistic terms and not get caught up in the details.

But, sadly, details have become my life.

I will sit down and work out how many syringes I need, including a safety buffer, and I will find a way to pack them. I will pack her medications and I will deal with the airlines. I will organise her feeds and I will probably spend our first night down there cooking and pureeing so that she has what she needs for the time we are away.

I will go through this trip with a smile on my face and a camera in my hands, recording every moment for time to come so that one day in the future we can look back and remember the fun, the happiness and the togetherness...

Yet, every step of the way there will be that little voice in my head, whispering to me.

How am I supposed to ignore it?

1 comment:

Alice said...

sorry to hear that you've had such a terribly emotionally exhausting week. Wish there was more I could say, but try very hard to "check reality out & away" as hard/impossible as that may be. You deserve to enjoy this trip with your sweet family ("starlight" gear or not!)and hopefully when the stress of getting ready to go is over, and you're on your way, you'll find some joy in your trip. That is my prayer for you. ((Hugs))

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