Days to remember and days to forget

Today is Vega’s ‘half birthday’. that means it is exactly half a year till she turns four and incidentally, since her birthday is on boxing day, it also means that it will be Christmas in six months already.

many of the other oncology blogging parents online and those at the Marsden are celebrating ‘half birthdays’. in the end the sad truth is that there is a possibility that these children will not see many more birthdays, or sometimes not even their next real birthday, so half birthdays are an attempt to fill a quota that can never be filled.

we are not celebrating Vega’s half birthday today. i find it slightly macabre and i also like to believe that Vega will happily celebrate her fourth birthday and many more to come. my optimism prevails.

although i am reading up on Vega’s treatments and drugs, i have so far tried to stay well clear of other onco parents’ blogs. but every so often i stumble upon a blog and i guess for the same reason that people slow down to check out a car crash i find myself reading it. now the thing about cancer parents and blogs is that many of those parents that had a child with cancer, had the treatment, survived it and walked away from it hoping to not think or talk about it very much any more.

most of the blogs online are written by parents whose children are still fighting cancer, some of them fighting a very tough battle, and of those children who have now “earned their angel wings”. i guess they are blogging for the same reason that i am doing it too, at least to some extend. losing a child, or the fear of losing a child leaves parents with a never ending void of utter devastating sadness and loss. i can not bare to think about it, hence my reluctance to read other parents blogs. hell i couldn’t even walk past a funeral home without starting to cry in the first few weeks after Vega’s diagnosis. i am now understanding more and more that death is really a part of life, but when a young life is lost, especially after having lived through such crappiness in the last few months or weeks of it, it is only sad and unfair beyond belief.

i find relief in writing about my fears and worries, but i also write because i feel Vega’s ability to deal with this, live through this is commendable and needs to be shared. herĀ  incredible journey through all this, written down it becomes a testament to her strength. writing about children whose lives have been lost keeps them alive a little while longer, refreshes the memories of who they were and the journey they had to take for as long as we read on.

but today on Vega’s half birthday we are mainly thinking about the future. we just returned from her induction day for her new nursery starting in September. Vega is excited and more excited.

escalating capizzi seems to finally catch up with us, her mouth is now sore and she has two big open patches of mucositis, yet she very rarely complains about them and still eats a variety of textured foods. she is asking for “something soft” more often though and yesterdays lunch looked like this

she asked for a shake, so seizing the opportunity i whisked bananas, avocado, whole milk and some mega healthy but foul tasting wheat grass, spirulina and beetroot powder. a dollop of clotted cream ice cream for good measure and a pretty straw and 5 minutes later Vega had her lunch in a glass. she finished half of it- more than i could have hoped for. her chemo diet is kind of fun because it is essentially an ‘anti-diet’. the more fat (ok healthy fats), carbs and sugars (for energy) we can get into her the better. so out with the semi skimmed, in with the double cream.

she is tired, really tired. people at Lyra’s school comment everyday how well she looks, and she does. she is walking around the playground, limp-skipping around like a strange little horse. at home she spends all her time in bed. mostly watching tv, sometimes playing lego or stickering. she gets tired out so easily and is not happy to go out for shopping or visits to friends or even the park. she just wants to be in bed. i think she gets her share of social interaction during our twice daily school run and that drains her for the rest of the day.

but tiredness we can deal with. i allow her to rest and allow myself to accept my life as a social cripple. i have dreamt about becoming a poet, and since i am a clairvoyant of some kind i might just start writing about our hardships- haha!

here is now to all children who are fighting the big fight, the fight of and for their lives, and to their parents and families. please do check out the links for Be child cancer aware and for ClicSargent and consider donating.

And here is to the future- and many many many birthdays.

 

 

 

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