I don’t consider myself to be a particularly religious person. I did go to Catholic schools when I was younger, but my parents (especially my Dad) did leave it open to us to decide what we believed in.
I do believe in God. I can’t help it, it’s a feeling in my gut that I can’t control. I must believe in God because I get angry at Him (in my view God is more likely to be female being a creator and all that but for ease in this instance I will refer to him as male), I pray to Him – there have been times I’ve been desperate over Samuel’s condition where I have literally got down on my hands and knees and prayed. That must mean I believe.
You look at children like Samuel and those that go to Julia’s House and you wonder how nature, how God can be so cruel. How on earth can this be allowed to happen. But then you look at Samuel’s gorgeous eyes, the pleasure he gives us, the love we have for him, the goodness he brings out in people and wonder whether there is a reason for this. I am angry with God. But at the same time I’m so grateful to have Samuel and thankful that he’s my boy.
I don’t think it does any harm to believe in something like God. What if I’m wrong, what’s the worst that can happen? I mean if there isn’t anything then I’m not going to know that am I after I’ve popped my clogs?!
I don’t go to church regularly at all. I don’t feel connected to God in church. For me, my church is my home. My home is full of love, joy and laughter. People come over to see how we are and to see Samuel and for his cuddles. That’s my kind of church. Perhaps it is being a Catholic and the sedateness of Catholic Mass, sitting amongst strangers. When I do go I often look around and wonder whether the regular church goers, the ones that come to church religiously (excuse the pun) are actually good, gold hearted people. Just going to church every week doesn’t make you a good person. I’m probably surrounded by people who have their prejudices, who judge people who may live their lives differently.
When Sam came home from NICU we got him Christened. Not in case we lost him, but to give him all his chances. To make sure everyone was in his team. I’ve been a union member all my working life and like to cover all corners, just in case. We’d got to know the Chaplin in hospital, he’d pop over to NICU for a chat and to see Sam. He kindly agreed to Christen Samuel in our own home. So yes, I suppose my home really is like a church.
I think I need to believe in God because I need Heaven. My boy will have a much shorter life than he should. I need to know that the end, isn’t really the end. I like to think that when my time comes and I walk up to the pearly gates, there will be my boy waiting for me and I’ll be with him again.
My mum doesn’t go to church very regularly either, but she’s very spiritual. When we realised about Sam’s condition she looked up various Saints to pray to and keeps a photo of him by her bed with her rosary. My mum always says that because Samuel is so pure, so innocent he is like a Saint. She wrote to the nuns that taught her at her boarding school and they promised that they would pray for him. So my boy even has a group of nuns on his team!
When I pray to God for Samuel, I don’t ask him for a miracle, although I’m assuming He knows that I wouldn’t mind if he did see it appropriate to perform one! To replace Sam’s missing Corpus Callosum. To stop the seizures, to let Sam start to reach development milestones, I would give anything and everything for a miracle like that. But all I ask is that Samuel is content and comfortable in his little world. We judge happiness on big smiles and laughter, but I think in his own little way, Samuel is a happy boy. And that is all we want.