Easter was slightly underwhelming for us this year, mostly because the smallest and noisiest presence in the house succumbed to a nasty tummy bug on Thursday afternoon and proceeded to vomit on and off from then until Monday, when the Easter break was pretty much over and the chance of recovering some holiday cheer and bounding off on a family adventure was nil. I emerged tired, grumpy and worried that she hadn’t even sniffed an Easter egg or anything else for the better part of 4 days. I felt as though everyone but us had found a patch of sun and reveled in family love and chocolate while I was mopping up vomit, washing sheets and screeching at the ones I love (it all unfortunately co-incided with one of my now rare hormone ravaged rampages – I blame the full moon).
Anyway, unerpinning it all was the uncomfortable thought that I am a giant SOOK and that feeling bitter about the loss of my Easter is PATHETIC given that I knew Lucie’s illness would have an end and there would be other and better Easters ahead. It is awful having a sick child and it seems never-ending but for the most part it is only actually a few days. A dear friend of mine has been in hospital with her baby girl for 7 WEEKS due to a rare genetic disorder and the need for a bone marrow transplant. She has – for the time being – lost her whole way of life. Easter Schmeaster. And even that loss is nothing compared to what she could lose if the transplant (God forbid) proves unsuccessful.
There are many families out there suspended in the nightmarish world of the sick child, hovering apart from everyone else’s world of daily grumbles and pedestrian complaints. For them, a fever free day or a smile from their baby is a triumph, worlds shrink into the small spaces allocated to them in a hospital – often in literal isolation, daily catch-ups are with medical professionals and places like facebook and instagram (where people like me thoughtlessly post showoffy pictures of their free lives) are almost unbearable to visit.
It sometimes amazes me, with all the intricacies of the human body, that there are so many healthy children born. But then when I look at the statistics, I am also somehow amazed at how many families must adapt to life with illness. According to the most recent figures, around 25% of children under 5 and 41% of the 5 to 15 age group suffer from chronic illness of some kind.
This is one of the best examples of how unjust life really is. I have a theory that these kinds of illnesses and disorders should – if they must happen – only be inflicted upon people who have done the wrong thing – abused the privileged ability to make babies, hurt others, ignored warnings… Never should they happen to people like my beautiful friend, who fought for conception in the first place, enduring years of IVF before giving birth to her precious girl only to find the biggest battle ahead of her. It’s very hard, with this in mind, to swallow the idea that God loves us all, even with a choccy flavoured Eastery-Jesus’-Sacrifice chaser.
Anyway, the purpose of this post is not to question Christianity, but to stop a moment and spare a thought for those families whose lives have had to find a different kind of normal – one of lowered expectations, simple pleasures, inward focus, higher pain thresholds and incredible courage. They all say things like, “I have my bad times but mostly we do it because we just have to. I can’t break, I have
to be strong for (their child).” Well, I say to them, I probably would have long ago shattered like a large hollow, cheapish Easter egg. You are amazing and I take my hat and everything else if necessary (no not necessary Meg, bad visuals) to all you mothers and fathers caring for (make that living for, crying for, praying for, not sleeping for, waiting for, holding on for, being strong for, sacrificing everything for) your darling children (the courage of these little ones is a-whole-nother post). I hope you know that your love and what you are doing for your babies is every bit as life-giving as what is in those tubes they are hooked up to. Fate can be a complete fucker sometimes and I know it’s no consolation but you will be able to conquer the world with the strength you have mustered.
And another thing – if you feel as touched by these families as I do – there is something you can do, at least for some of them. I have too
many germs, too many hooligan children of my own and not enough knowledge or skill to provide my friend and her family with any useful support. Mostly I have just given my thoughts and love, with a kind of guilty helplessness. So it was quite serendipitous that I came across a truly wonderful foundation called Captain Courageous. (click on this sound cloud link and play the song while you read this please – I want maximum effect). This project has been initiated by Jessica Bond, the mother of a little boy named Angus who suffers from a Bone Marrow Failure disease – one of a group of very rare diseases that are life threatening and incurable. The extra problem with rare diseases is that because they are rare, they don’t attract the research dollars and so families are either praying for miracles or raising funds themselves.
In this instance, Jessica’s friends – possibly feeling helpless like me – have come on board to help Captain Courageous cause, using their passion for food. Kirsty Willows and Helen Burge have produced a beautiful cook book called “After Dinner Mints for Breakfast” that anyone can buy – all profits going to the Captain Courageous Foundation. I bought one immediately. Admittedly – given my distinct unpassion for cooking – I did it just to support the cause but this really is a great book – not too scarily big, filled with real recipes, no jus or goose liver, nothing too complicated and really very inspiring. I have actually used it – even opened my closed meal repertoire to let in a few new dishes, much to the delight of my husband’s bored but surrendered taste buds. I mean it, get the book, it has lovely pictures and stories behind the recipes too. You can have a preview of it here. And you MUST buy it here.
And finally – to those of you who have healthy children (including me) – give them a big hug, tell them you love them, shut up about dirty uniforms and nits and thank your blessed stars. ( I say ‘blessed’ because it is an amalgam of my children’s names – Bess, Ed and Lu – I know, possibly a bit OTT with the saccharin but hey, I am feeling blessed).
Love you F, E & O. xxxx
Tags: after dinner mints for breakfast, Angus Bond, bone marrow failure, bone marrow transplant, Captain courageous, child health, child illness, chronic illness, easter, Jessica Bond, sick babies, sick child