Sunday, December 18, 2011

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.

1 comment:

denise said...

Sending you love and gentle hugs for Nicola from the UK x

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