Yesterday was a very difficult day, to have gone from so well one day to so poorly the next was a big disappointment. John stayed over with her last night. He was very eager to for the reason that for the last two operations Louise was breastfed so there was no option of John having a chance to stay. To be honest I was happy to get a full night's sleep after my one hour the night before.
In the morning I text'd John to see how Louise was and how was the night.It seems poor John had the same experience asI had the night previously. I'm not sure whether he even got a chance to get into his sleeping bag! Louise wanted him to hold her hand and stroke her all night. Her temperature was still spiking each time her medicine wore off and he had to witness the sorrowful sight of re-doing the failed bloods from yesterday-he hated that.
Today Louise has turned a corner, her temperature is still spiking but she managed, with a great deal of self-pity, to go for a little walk out to the playroom, a much shorter walk than her 'Shufflin'' expedition. She's very nervous as the painful drains are still in, we're hoping her fluids reduce enough to get at least one of them removed tomorrow. She sat out in the chair for a good while though she's very protective of being moved even an inch.
Her sisters really gave her a boost today, they spent several hours entertaining and playing with her. Her mood and demeanour is much improved.
Because her x-ray came back clear, the cardio-thoracic registrar decided to remove Louise's wound dressing to rule it out as the source of the fever. Lo and behold...there was the culprit...an icky patch at the very bottom of the incision. It's very near the site of the drains which have been in for this will be the fifth night and also the pacing wires which are also still there, both leading to the very inside of her body. So she is now on a very strong antibiotic. So today was better than yesterday and hopefully tomorrow will be better again.
Last night and this morning while I was at home I have been thinking a lot about the meaning of suffering and in particular the sufferings of children. When an adult suffers it's bad but we expect adults to suffer somewhat. People age and also most of us don't care for our bodies as well as we could...we exercise sporadically, we love fats and sugars and so on. But a child suffering?? What can we make of it? It goes against our comfort zone. Why should a child suffer? I have thought over this long and hard since Louise was diagnosed. We know suffering is a mystery we will never understand. It's part of being human, even the healthiest of us have stood on a Lego. If you stop and concentrate on your body right I guarantee some bit of is is sore or aching or uncomfortable. We don't even notice it any more. But back to a child suffering...in particular a child that was conceived with suffering as part of their lot. Nobody could say they deserve it, innocence personified carrying a cross that would daunt Mr Universe. Why? Why is that? We recoil from the thought, and I always did as well. You know, drive past this hospital, spare a thought then forget it at the next traffic light. I'm not saying I didn't care but it wasn't MY life and it's hard to go there.
I know I've said this before and many of you will be aware that the thing I find most difficult to put behind me is not Louise's problems but the fact that someone suggested we kill her. Nobody ever wanted to kill any of my other children but it was taken as almost expected and the responsible thing to do to take Louise's life because she wasn't 'right'. In fact I have been accused on Twitter of cruelty because of Louise's sufferings over her operations and procedures. In other words, better dead than suffer even something that will ultimately help her. When I was here when Louise was a tiny baby a woman in the queue for x-ray told me she definitely would have aborted Louise rather than have a disabled child. When I got over the shock of someone saying that about a baby sitting in front of them I realised that it demonstrated the way our culture has such a fear of imperfection and suffering is something to be avoided at all cost, even to the point of taking life.
Others say how could God allow a child to suffer? Children become ill and children are conceived with anomalies so therefore there is no God or if there is one He's cruel. My many many hours of pondering this over three and a half years and even more intensely on days like yesterday have led me to a very very different perspective.
I think there is real purpose in the lives of children who carry a heavy cross. A lot of you will have seen the film The Passion Of The Christ. It's brutal and stark. I sit on the fence as to whether and by whom the movie should be watched. But I remember the scene that touched me by far the most in the movie, and this was years before Louise came along. It was the scene when Simon of Cyrene helped Jesus carry the cross, albeit under duress. At first he was reluctant even resentful and angry but as time passed he carried the weight if that ugly reality with more enthusiasm. We hear the stories from the bible so often they become routine to us. But look at Simon...the ONLY person in the history of mankind who physically carried the actual cross of Christ. What's with that? As we know Jesus did nothing for no reason.
Who was Simon? Nobody as far as we know. Who am I? Who is Louise? Less than nobody in some medical mindsets. But not in here where I'm sitting now...here she was somebody from day 1, here she was Louise. Here her life had and has value. Here they treat children with the most 'grotesque' of anomalies ( here I'm talking from the world's view, most definitely not mine) as someone important, and real and due the same love and care that is due to any child. Nobody here ever said kill her, no, they asked us her name and from there on she was Louise, not an anomaly or an inconvenience or a drain on resources.
Back to Simon...a random man who never thought it would happen to him. Carrying the cross and finding it changed him forever for the better. Sometimes, and I've seen it time and again, looking back on a bad situation people say it was the best thing that happened to them...put life in perspective..etc etc. But sometimes I think it takes more than our own suffering to do that. Sometimes it takes the suffering of innocence to stare us in the face to wake us up.
Yesterday and this morning and on other low days in Louise's journey I have faced suffering of innocence head on. What does it do to you to do that. It strips you bare of every single thing in this world that is superfluous or superficial. It leaves you with nothing except the core. It is stark and raw and the pain is something else but you can see it by it's name.
LOVE.
What has Louise done to deserve this? Nothing! Is her suffering the pointless act of a cruel God? Most definitely not. Before I formed you in the womb I knew you...I have you CARVED in the palm of my hand. CARVED...that's pretty drastic. Not written on with a sharpie or not even tattooed. Carved implies a deep cut. Why would you do that if you didn't care? Louise didn't ask for or earn this cross but look what she has done by carrying it. The very fact that you are reading these jumbled thoughts means she has done something to you.
My very close friend had a little son whose prognosis was very poor. Some of his 'anomalies' overlapped with Louise's. He passed through this world for one year and two weeks. A speck in the world's eye. A life if no value some might think. And yet those of us who walked his path know nothing could be further than the truth. This little boy opened the eyes of thousands right across this planet. People loved him in a way they couldn't understand, we're almost taken aback for what they felt for this boy they didn't really 'know', whose family they will never meet and it has forever marked their lives in a way few people mark the lives of anyone. I don't think I am being an overly proud or boastful mother to say I think the sufferings of the little child asleep with exhaustion in front of me right now with drains and monitors and depending on an O2 boost to keep her sats from crashing has done the same. Why are you crying about Louise? Because you know she doesn't deserve it and you know that we complain all the time about nothing. It puts us to our knees, it makes us hug our healthy children with a closeness we'd never have thought of. You know, I used to care what people thought of me. To know your child is sick and that somebody else's prayers might help soon cured me of that. Of course I still care about reputation but you know what I mean.
God doesn't make mistakes. He doesn't and He didn't. Louise is not a mistake. She's not an anomaly, she's not a problem. Louise and the children I've come to know through her are not the problem. They're the antidote.
So take that antidote and thank God for sick children. It's an honour and a privilege I could never have imagined to have a suffering child in my life. I need her, you need her and the world needs her. She is Simon and God picked her.
And now I'm going to publish this without reading it or I know I'll delete the whole thing.
J xx
