A Day in my Life

It's the 14th, and so Little Jenny Wren is kindly hosting A Day in my Life again.

November the 14th is an important day for us. In the words of a dear friend, it is "Happy Loveday" On this day six years ago I met Mog for the very first time, and brought her home from hospital. You can find Mog's story here, here, and here. And now we have lived together for six years. It's an odd day - it isn't a birthday, it isn't a legal milestone, it is just the day when we left hospital together. The start of our lives together, a good and beautiful thing. But such sadness in it too. The pain on her parents' faces as they handed her over. Now we share Mog very happily, but there is always loss in today as well as joy.

I could blog the whole of my day, our day, but it wouldn't necessarily be any different from any other day. We got up - Mog was awake and unhappy (lots of seizures) early in the morning so the day started rather too soon for my liking. Despite that, we managed to be late leaving the house, had a nice morning out, came home, had lunch, had a physio session for Little Fish, walked to the post office and back in the dark, had tea, put the girls to bed, came to the computer.

I could blog all that in detail, and pad it out with many photos, but I'd like instead to give you A Morning In My Life and talk about the bit of the day where the camera didn't come out.

Today was a ROSY Day. ROSY (Respite Nursing for Oxfordshire's Sick Youngsters) is an absolutely wonderful organisation. It's a lifeline to parents who do battle day after day in order to keep their child alive. My girls are thankfully healthy enough that we only qualify for occasional nursing respite, after surgery for example. But for some families an overnight nurse is the only way the parents can ever be sure of having a night's sleep. For some families, three hours a week supported by a respite nurse is the only time they can ever leave their child's side. ROSY also has a certain amount of funds to purchase necessary equipment when other services are not able to do so.

Those are the big things ROSY does. It's easy to see how that directly benefits families. But today was one of the smaller ROSY events, today was a ROSY coffee morning. Once a month, members of the committee throw open their homes and welcome ROSY families. There are ROSY members of staff present to care for the children who are not at school - whether too sick to attend or too young, siblings as well as the disabled child. And we parents get to sit down and drink coffee and eat biscuits. It doesn't sound like much. I don't think though that even the committee who organise these events realise quite how important they are to us. I'm sure we are a nuisance, today we were roundly ticked off for not having replied to an email about a Christmas event, ticked off again for talking too much when information was being given out, and ticked off again when the conversation, as it inevitably does, turned to poo. For future reference, do not try to clean poo out of a carpet using a pressure washer unless you like the pebble dash effect all over you wall.

It's difficult to explain. Today three of us sat on a settee, and giggled over song lyrics. And then we sobered ourselves discussing the possibility of waking up in the morning and finding that your child was not every going to wake up again. And we giggled about another friend dealing with a poo river. And we sobered up talking about seizures, and inquests, and funerals. And then we giggled again over the many ways of arranging a decent summer holiday, and then had a quiet moan about a particular form of respite (not ROSY) many of us use. And then we talked about another child dying, and then we burnt our mouths on hot mince pies, and laughed at each other for doing that, and then someone cried about how hard her life is, and we got outraged about the totally avoidable red tape issues which prevent us from doing certain things, and then we got silly again about stickers.

From the committee member's point of view, this must have been frustrating. There were things which needed to be discussed. Equipment the committee could buy, support the committee could offer. And yet, that wasn't what we needed. We needed to be able to talk, to chat, to laugh and to get upset, to sing silly songs and talk through what happens when your child has an early best before date. Someone not living in that world cannot fully grasp that. We are "amazing" for doing what we do, when for many of us, we had no choice but are just doing what needs to be done. We are "morbid" for considering the very real possibility probability that our children will not outlive us. We are "naughty" for not listening to the minutes of the meeting. And we are "heartless" for laughing so loudly in the face of so much distress. And we are asked yet again what can people do to help. The thing is though, the most important thing of all, the single most helpful thing anyone can do, is to provide those opportunities where we can get together and do the laughing and the talking and the rapid blinking of the eyes until you can start laughing again. It is safe to think the unthinkable when you know you aren't the only one thinking it.

I lost a daughter. That sounds as though I left her in Tesco. I'll rephrase. My daughter died. I have two other daughters who will probably die before I do too. That isn't something I can talk about with the majority of the world. Not because people are not supportive or sympathetic, but because it is a reality so far removed from most of us that it is one of those places where the two worlds we live in do not collide.

I'm talking online to other friends about coffins and funeral services for children, services for children who haven't actually died yet. Something which the world sees as morbid. But for the parent watching their child die, for the parent who has been told "oh terribly sorry, we know we said you were just being over fussy but oops, this child actually has a terminal illness and there isn't any treatment", the only thing there is to control over that process is the funeral. You can't control when death will happen, you can delay it and you can prolong it and you can decide the child has had enough and not prolong it any more, but that is not control. Hopefully you can keep the child free from pain as your own heart breaks, but that is not control. Depending on how and where the child dies, you may not be able to hold a funeral service for a while either, you can't control that. But you can control the funeral service itself. It isn't morbid, it is survival. It is taking the big of the process you can control, rather than losing yourself in a whirl of uncontrollables.

And after the big topics, we come back to earth and moan about the mundane. It's safe. It's necessary. It's survival again.

So, I collected the girls, loaded them back in the van, and we came home. Back to reality, back to the mundane, back to our regular normal for us lives for another couple of weeks until we plan to meet again. I don't think the committee will ever fully understand why we find the support group meetings so important, why we say we want a support group but we don't appear to want actual support, why we get such support from just laughing with friends, and how much those cups of coffee and biscuits mean to us.

That's a morning in my life.
Tia