This post in no way is intended to hurt, upset, isolate or otherwise denigrate any other individual or subset of individuals. It is simply an expression of feelings that I have been struggling with and are now really coming to the surface.
If you are likely to be offended, please no not read on. Please do not read on then flame me or insult me for expressing my feelings. Thank you for your understanding.
How do you cope with the realisation that your life is just simply never going to be like anyone elses? That your trials are so hugely different that people struggle to imagine and the hope of any real comprehension is nothing but a pipe dream that is slowly fading to smoke?
It has been weighing on my mind for a while now that since Nicola's birth I struggle to make friends... most of my acquaintances seem to lump me and my life in the 'too hard' basket and move on, and I get that... there is not a whole lot of understanding of what my life is really like.
I have gotten quite good at dealing with the ignorance of strangers. I am used to it I guess. When we were leaving the Zoo in Melbourne I was with my friend Kirstin and there was a stranger who walked passed. He looked at Nicola, then did a double take. He looked again a third time and kept on staring as he moved away from us until he just about walked into a tree. The look on his face, well, I guess the only definition I can come up with is a bitter mix of contempt and disgust.
Kirstin was horrified by his response, and with a look of complete incredulity on her face she turned to me and she asked "Does that happen often?"
All I could say was "Yes."
It doesn't bother me much any more, I guess my skin has just gotten thicker. I remember once when I was leaving the Mater in Brisbane with Nicola in her stroller there was an older couple who passed us in the corridor. She nudged her husband and indicated toward Nicola and said "She's got a right funny face on her that one!" And I just lost it. I rounded on her with the fury of a mother scorned and I told her precisely what I thought of her ignorance, her rudeness and her plain stupidity!
It hurt me to think that there was someone who thought that my daughter was less than perfect.
To me she is my sun... and God knows, I spend enough time awake with her at night for her to be my moon too.
I guess that is why I think the trip to Melbourne was such a bitter pill to swallow for me. Everything we did, I was faced with the realisation that we were doing it because of Nicola, because she has cancer, because we were told to make our memories now.
Everything we did was with the knowledge that it may be the last chance we get to make these memories together, as a family.
On the weekend I was talking to a 'friend' (and I use that term rather loosely, really I guess we definitely are more like acquaintances) told me how lucky we were to have a free holiday.
I can say with complete honesty that I felt like I had been slapped in the face with a besser brick.
I mean... you've GOT to be kidding me... Right??
I looked at her and I said to her "Would you trade one of your children for a holiday?" At which point she laughed like I had made the biggest joke of the year.
I guess from her perspective it's not more than a joke, I mean, she's not faced with my reality is she?
But to me, it's not a joke, and that holiday most certainly wasn't 'free'.
Perhaps it didn't cost us a whole lot in terms of actual money spent... but at the end of the day, money can be recouped.
Our daughter's life cannot.
What we got wasn't really a holiday, it was a consolation prize. A "Gee, I'm sorry your daughter has this horrible life threatening medical condition and I'm sorry that she has got cancer that is likely to be untreatable... but because of all that we'll give you this holiday and it's all good!"
And more and more lately I'm starting to realise how incredibly short Nicola's straw really has been.
I see her 'peers' (Other Children with Costello Syndrome) who are reaching milestones... sitting up, standing, first steps, tube weaning, etc... most of them much younger than Nicola, and it reminds me again and again how far behind the 8 ball we are.
We are very very rapidly approaching Nicola's 4th birthday. At this age she should be able to sit, stand, run, walk, talk, interact... she should be able to do so much, yet she can't. She is not on par with normal children, she is not on par with other Costello Children... she is so far behind... and it hurts.
Don't get me wrong, I don't begrudge other parents their joy at their child reaching milestones... but sometimes, tonight especially, I can't help but sit back and ask "When is it going to be our turn?"
When will we get to celebrate milestones like everyone else?
I mean milestones other than 'first chemo', or 'first blood transfusion', or 'first tube replacement'.
We are nearing the end of Nicola's chemo regime, with only 5 weeks remaining, and I think that is exacerbating my feelings at the moment.
For the last 38 weeks we have cruised along in our own little world. We don't quite fit in anywhere, we are too complex for any support group to understand, so we kind of just drift along dealing with things in our own way...
But now, I see other families who have finished chemo and they're slipping back into a 'normal' life, and I just don't see how we can do that.
Even post chemo, our 'management' plans are more complex than everyone elses. Nicola will not be in remission. She will not be NED (No Evidence of Disease). She will still have a 10cm tumor in her pelvis. Where most kids go onto a monitoring regime of scans every 3 months, Nicola will be having scans every month... and every day in between will be filled with a feint cold fear of what the next scan will find.
So, we will be the parents with the child who still cannot sit, stand, walk or talk, who needs huge doses of strong pain medications and anti anxiety drugs just to get through every day, and we will live lives in constant fear of what is laying around the corner... all the while sitting back and watching everyone around us live their lives, celebrate their milestones and moving onward and upward.
I love my daughter and I cannot imagine my life without her. She brings us so much joy and happiness. She is cheeky and precocious and so very very precious... and the thought that there is a day looming in the future where I will not have her in my life just hurts me so very very badly...
Why can't, just for once, we have sunshine and lollipops for her, a ticker tape parade and 76 trombones and all that jazz?
Why does the time I get to spend with her have to be filled with so much hurt??