It's almost a year since my life changed forever and this last week I've been pondering over specifically how this amazing experience has changed me. It has changed me for sure, this sort of journey is not one where you just park your car at the end of it and walk away unchanged. I know I'm different and I surely will never be the same person I was just this time last year. So this article is going to go on some wild meanders as I try to articulate my thoughts of this last year and my perspective of the future.
When we got that terrifying diagnosis last year part of my suffering was a bereavement for my life up to that time. I looked at photographs of my childhood with sorrow for the little girl smiling at the birdie my father had indicated was hidden in his old rolliflex box camera having first checked the light with his hand held light monitor which always fascinated me. Looking at those old yellowy orangey colours of the hot summers of the 1970s and early 1980s what I saw was that my life then was all a preparation for this sorrow I was now going through and that this is actually what I was here for. I looked at my wedding photographs and imagined I saw sadness in my eyes as though I somehow knew then what I know now. Every song on my ipod simply reminded me that life as I knew it was over and a new unknown life lay ahead of me. I was completely devastated, terrified and broken hearted.
I can look back at myself last winter time and again at the kitchen table when John was at work and the children at school with my head buried in my arms crying. I never thought Why Me?...Well...Why NOT me? Why anyone? I didn't think this was something dished out to people for some unknown reason. I didn't think that God had made my child sick to make me and John better people..I don't think God takes any pleasure in human suffering. I didn't know how or why we were in this situation but here we were in it and there was no wriggling out of it. I DID know one thing..I LOVED this little Louise person and I didn't doubt for even a single second that God loved her even more. I read this paragraph by St Josemaria Escriva over and over...
My children,” he said to someone who asked him what to say to a couple who were suffering over their child’s disability, “I can tell you something about a person who had a serious, incurable illness for ten years, and was happy – happier every day, because he abandoned himself in God’s hands, convinced that God was not just a theory, somewhere far off; he is more loving than the most wonderful of mothers. And I’ll say again what I said before: he is all-powerful, and doesn’t take pleasure in what harms us but what is good for us. I will remind that father, that mother, both of them, that when your child is playing with a knife or matches and you are afraid he’ll hurt himself and take it out of his hands, he cries, because he wants it and you’ve taken away his toy. We, with our earthly vision, are looking at the back of the tapestry, at the tangles and knots, and we don’t understand that true happiness comes afterwards, that everything in this world slips away like water between our hands. It doesn’t last. Tempus breve est, says the Holy Spirit: time is short. There is very little time to love.
I can only see the back of the tapestry..God can see the front!! I can only see the back of the tapestry..God can see the front!!
I loved this little person and that thought gave me the adrenalin to keep going. That and the fact of five other children who didn't need a mother who was falling apart. So what was the secret of how we got through the last year? Without a doubt it was love. Louise by existing flicked a switch in us..in me and John, in the children who offered up countless small suffrages for their baby, in the Grandparents, aunties, uncles, cousins, friends, children of friends, friends of friends..in a ripple that just went out and out and out right across the world as many of you know. Quite quickly and long before she was born I realised that this child was not a suffering but rather someone who had a lot to give just by her existence. We didn't know whether she'd live or die, whether she'd walk, talk and so on ( and though it's looking very positive we still don't) but for sure the World already was a better place for her being here.
So we kept going and now we're emerging from the tunnel and the sunshine is looking very very good.
Why am I writing this and publicly exposing my soul? Because I am not the only person who has ever lived through this. At this moment all over the world and every day there are parents receiving grim news about their unborn or newly born babies. There are parents who are being terrified into dreadful decisions (sometimes by doctors through either ignorance, eugenic outlook or lack of humanity) or going through incredibly stressful pregnancies with little support. There are parents all over the world who need you and me to carry them when they can't carry themselves.
I had never been inside the heart of a children's hospital before but now I'm acutely aware of the hidden suffering and vigils of love that go on in there. I want to let the world know about the strong women I met advocating for their children ( the way it turns out is that generally it's the mothers who overnight with these children and make it to appointments) and the men who stand by cots, beds and incubators stripped of the 'hard man' illusion and showing the actual real tough man they really are. I overheard a man who by the look of him had led a street-wise life speaking to a specialist nurse in the corridor one day 'The doctor said his brain is damaged but I don't care what's wrong with him...I just LOVE him!! ' in the broadest inner city Dublin accent. To me he is a real man.
I am not the only person who has worried and cried over a sick child, who has wished she could wake up and it's all not happening and I am NOT the only person who would not change my life for the world!!!! To me now love means something completely different. It means giving when you're not sure whether you'll get anything back in return. It means losing your self image and being willing to ask the most unlikely of people for help..I've asked for prayers from atheists appealing to the faintest glimmer of doubt in their mind that maybe just maybe there IS a loving God and that this prayer may be the one that'll make the difference. I've asked prayers from every shop assistant I met or person who admired my baby..I'm sure there were times people thought I was weird asking this from total strangers but every prayer was like gold dust and I was accumulating them like a miser with coins.
And now it looks like all these prayers are paying off. Louise is doing exceptionally well. Neurologically she's bang on track. Heart wise she's doing great and will just have all her check ups and medications for the foreseeable future. She's just loving her solid food weaning suddenly realising that medicines aren't the only tastes in the world!! Listening to my newly found love song radio station for some strange reason every song is about Louise!!
And my new favourite colour is definitely PINK!!!
So if you know someone going through this..PRAY for them and tell them. And give them FOOD :-)