By the grace of God . . .

Now, I’m not one to force my religious views on anyone. Each to their own, I say. However, my mother posted a comment on my Facebook page that triggered a thought in me and I thought I’d share. She commented that she finds it hard to maintain her faith at times like these, referring to Moo’s test results.

It made me think. I am what might be called an agnostic when it comes to religion. Don’t get me wrong, I have an undeniable, unshakeable belief in God. It’s just religion I have an issue with. I was born into the Catholic church. Something I have held dear all my life, not because I was raised in the church. I most definitely wasn’t. Being Catholic was important to me because it is a part of my cultural heritage. My mother is from the Seychelles, a Catholic country, therefore it was a part of her and, as a result, a part of me. So deeply held was this affection that I was quite shocked and horrified when I found out that I had accidentally excommunicated myself by marrying outside of the church without my Bishop’s blessing. Having not been raised in the church, I didn’t know that I needed it.

Religion is basically another man’s way of telling you how to maintain your relationship with God. It’s rules and regulations that govern what you do and, if you do differently, you are doing it wrong. It’s the basis of most of the discord in the world and has resulted in countless pointless deaths, just because one person chooses to follow one religion’s guidance over another. Somehow, the fundamental principles of love, forgiveness and acceptance get lost. Your relationship with God is personal. It’s between you and Him. Who am I or any other to tell you how to maintain that? No one has the right to criticise my marriage except my husband or me. A relationship is between two people and is for those two people to run. It’s the same with God.

As for who God is to me, He is the rock that I lean on everyday, the best friend that I talk to, the Spirit that guides me. You may have gathered that I don’t go to church. Yet, every day, I acknowledge that my life is full of the blessings and miracles that God has granted me. Moo is one of them. Her test results were awful, unbelievably painful to conceive of, and yet, not once did I blame God. It’s not His fault. If it weren’t for Him, she would not be here at all. She died for six minutes on the day she was born. If nature had had its way, she would never have survived her birth. It is only by the grace of God that she is here today. I had nurses and doctors completely shocked and perplexed by her survival, telling me that it was impossible, that they don’t know how she did it. I know how. It was a combination of that little girl’s indomitable spirit and God holding her tightly.

People forget that we live on a planet with limited resources and that human beings are, essentially, a mammalian weed, taking over and slowly destroying the planet we live on. Animals and plants are going extinct, while we grow palm oil to make peanut butter smoother. Rainforests are being torn down, so we can have bigger houses, more land for cattle. Endangered animals are hunted down just for the fun of it. It’s barbaric. There has to be some control on the growth of the human population and nature does this with genetic tinkering. Not everyone can live to be 100. It’s heartbreaking when it impacts you but there is no other way. So yes, I could sit all day wondering “why her?” but, equally, “why not?”. It’s just the way it has to be, for someone. There is no one to blame. That would just be a waste of energy. I’d rather use my energy to love and appreciate who and what I have in my life.

So, yes, my life has some horribly painful elements to it but it also has a lot of joy and light and blessings and miracles. It has wonderful, loving friends and family. It has sunshine and showers, rainbows and puddles. It has laughter, a lot of laughter, and a few tears. It is rich beyond measure. But most of all, it has Moo, my joy and my reason for being. And for that, I thank God.


And the hits just keep on coming . . .

Two weeks ago, Moo and I spent three nights on Koala Ward at Great Ormond Street. It was a significant stay. She had an angiogram one day and an MRI the next to see if the EC-IC (extra cranial to intracranial, sometimes called an STA-MCA) bypass she had done in August had been successful. Moo seems to sail through surgeries but give her an angio and it’s hell. Last year, she had a 5% chance of reacting to it and proceeded to be completely paralysed down the right side of her body for four hours. This year, she woke up ok but was struck by crippling headaches from 7.20pm until 6.20am. Broken sleep, shrieking in pain, vomiting, it was all going on. So we stayed an extra night after the MRI to make sure two GAs back to back didn’t muller her.

The surgery has a 90% success rate. I went to Great Ormond Street on Thursday to get the results. When doctors won’t give you the results over the phone but ask you to come in to look at imagery, you know you are in for a rough ride. All they had told me in advance was that there was nothing untoward. I knew they were lying. I decided that meant that they hadn’t found a tumour.

The best news they could give me was that she has not had a stroke and the left side of her brain “seems to have stabilised”. The operation itself failed. It did not work at all. She still has a compromised left hemisphere with very little blood flow. On top of that, she has developed Moyamoya in her right hemisphere. In a year, it’s gone from healthy to compromised as the blood is not getting everywhere it did. She also has three little areas in her blood vessels where it looks like little balloons but they don’t know what is causing that. They may or may not be aneurysms or it could be that the vessel feeding into that bit is so narrow that it makes the “normal” part look like a balloon. The right side is providing some blood flow to the left so we need to stem the Moyamoya on that side before we do anything to the left. Her arteries in her brain are odd too. Apparently, they are not as wiggly as they should be and are a bit too straight. The EC-IC didn’t work so there is no point doing it on the right side. They think the best way forward is to do burr hole surgery to increase the blood flow. They drill holes all around the skull to encourage blood flow but the fact that she has a thick skull, thanks to the OS-CS, makes it more tricky. They could make things worse rather than better but if we leave it, she’ll have an oxygen starved brain, suffer a brain injury or worse and that would be insane. It explains why she has suddenly been having a lot of headaches. I reckon we’ve got about four months until she starts having serious TIAs on the left regularly and we want to avoid that. When Moo first had TIAs on the right after her left side of her brain was affected, they were severe. She ended up in ICU at one point because she developed waking apnoea where we had to remind her to breathe. Not only that but the TIAs addle her brain and she lost a lot of skills that she had worked so hard to achieve. Now it’s about to happen all over again.

Going home and telling my husband all of this was heartbreaking. He had no idea. As usual, I knew all along that the surgery hadn’t worked. My understanding of Moo is on an almost psychic level. There had been too much Moyamoya activity for it to have worked. However, those around me, including Mr G, assumed that because her TIAs were less severe and not as frequent, it would be good news. They didn’t take into account how often she blanched, word searched, slurred, how tired she could get. Those were the signs I was looking at. The news about the right hemisphere completely blind sided me. I knew she would develop it at some point but I thought we were years away from that.

They will do the surgery on the right first in September, hopefully, and then look to do it on the left. The left is more difficult because she has already had neuro surgery there. But they can’t tell us what the chances of success are or the prognosis because they said they are in uncharted territory. They’ve never seen a patient like Moo. It’s all an educated guess.

My greatest fear in all this is that Moo suffers a brain injury and starts to lose some of her ‘Mooness’, if that makes sense. Since the day she was born, our focus has been on quality of life. We want her to have the fullest, funnest life possible. She is such a character, so funny, loving, bright in her own way, infuriating, down right rude sometimes. She is Moo.

What do I wish for now? That they save her, no matter what? After the shock wore off and I was in bits, I sat and talked it out with our neuro nurse. If we are in uncharted territory, and things are not looking great, as a her Mummy, what do I hope? I don’t want her to suffer a severe brain injury and lose who she is, just so that I don’t have to say goodbye to her. I don’t want her to die either, obviously. It’s like being stuck in the most hellish no man’s land where no one can tell you what the future holds. For a control freak planner like me, it’s unbearably terrifying.

So I’ve decided not to think about it. At all. We are having an extension built as planned. I’ll focus on my dream kitchen. I’ve contacted the breeder that I want to buy a puppy from and found that she hopes to have puppies at Christmas time, which is perfect timing for us. We are going live life full blast and enjoy every moment.

People naturally want to reassure me, tell me to think positively, that everything will work out for the best. I would say to those people, please don’t. That’s not empathy. That doesn’t help me. You don’t know what the future holds. I don’t. I don’t want platitudes. Platitudes will wind me up. What I need is what my best mate gave me, a text back that said “Fuckety, fuckety fuck. Gutted. xxx” Then let’s plough on.

We have never focused our life around Moo’s health issues. We focus it around who she is and what she needs. She’s six. She needs love, boundaries, guidance and a lot of fun. So that is what she is going to get.