80%
Us on a rare day out one month after his Epilepsy diagnosis at four and a half years old.
I wrote this post three and a half years ago, shortly after Rufus was diagnosed with Epilepsy.
It's safe to say I'm not the only parent in the world who goes into panic mode when they get a phone call from school or nursery. This week it was nursery's turn and the mild panic set in almost immediately. Add to that his key worker's opening line being, "I wanted to let you know Rufus has been showing some unusual behaviours this morning," and I was already coat on, out the door before she had finished her sentence.
The rest of the day revolved around keeping a close eye on Rufus at home until we made The Call and paramedics arrived. I had a feeling what the 'unusual behaviours' were but until I had seen them with my own eyes I absolutely refused to believe what I thought was happening, even though in the back of my mind I just knew.
Rufus does lots of unusual things - he's a quirky kid and he likes to keep us on our toes. Based on what the nursery staff said, he could've been tired, he could've been looking intently at something in the corner of the room, he could've been smiling in a weird way, he could've just not wanted to look at them while they were trying to get his attention for over a minute, he could've just wanted a lot of cuddles. They could've just got it wrong.
So I brought him home, we made our own judgement call as we looked at our tired, cuddly boy and we put him down for a nap. And he napped. That should've been our first warning sign. The boy does not nap. Ever. We put the video monitor on and I sat glued to it as I drank tea and fed the baby. I watched him fall asleep, listened to him breathe and went up to check on him numerous times. Maybe he was just sleeping off a really bad night or maybe he was coming down with a cold. One and a half hours later he woke up and Dan brought him downstairs. And that's when it happened. That was the moment I could no longer pretend or deny what I had dreaded most.
I sat next to him on the sofa while he had a seizure.
My poor boy fixed his eyes on the back of the sofa and I could do nothing in my strength to snap him out of it and make him look at me. I lifted him into my arms like a baby, held him, stroked him and talked to him as I watched his beautiful blue eyes with those long black lashes rhythmically blinking over and over again as he stared into the corner of nothingness.
At some point while I was holding him I heard myself shout, "Dan, he's having a seizure!" And for the first time in my life I had admitted what I never wanted to say.
See, since diagnosis day we have known all along that seizures were likely. In fact 80% of children diagnosed with Angelman Syndrome suffer with seizures. But there was always the chance that Rufus would fall into the 20% category. And this is what we had hoped for, this is what we and countless others in our lives had prayed for and actually started believing. The onset of seizures in AS averages around 18 months - 2 years so the older he got, the less likely it was. And so we carried on with life with our now four and a half year old, believing we were out of the woods. Illness came and went, temperatures spiked and 'febrile convulsions' occurred a handful of times but never did a medical professional give the label of 'seizures'. Until that day.
As the paramedics went about their checks we held our sleepy boy in our arms as he drifted in and out of awareness, he came round, drifted again, smiled and even bum shuffled over to their equipment and had a look at all the lights and buttons. I packed a hospital bag and off they went with their blue lights flashing, Dan, Rufus and the paramedics.
No one prepares you for how to deal with a trauma when you have a six year old and a baby to look after and keep everything normal for. Thankfully the baby is blissfully unaware of anything. As long as she has a constant supply of milk and cuddles then nothing else matters. But it was only 4pm and I had the rest of the evening to remain calm, constant and chatty with my six year old daughter. My world had just been turned upside down but hers didn't need to. So we watched a movie, ate biscuits, chatted, laughed and had a long, drawn out cuddle and chat at bedtime. She told me she was going to be brave and I told her she didn't need to be. She could be sad, worried, cuddly, ask all the questions she needed to but she did not have to be brave. So we talked about her worries, I reassured her that she and her sister wouldn't have seizures and she switched her bedroom light on and off repeatedly to try and understand what was going on in Rufus's brain. We prayed for Rufus and then I went downstairs.
And I cried. For the first time I didn't need to put on a brave face. It was just me and the baby. And God. A God who I had prayed to many times before and asked to protect my boy from this ugly side of Angelman Syndrome. A God who I believed had heard my prayers and only had my boy's best. And I told him I was angry, I told him I felt let down that the God who created Rufus could have easily prevented this from happening. And I turned my back in a strop and slammed the door on him for the next 48 hours.
Within that time Rufus had another seizure, this time a tonic clonic seizure where his body was jerking too. He slept no more than 1 hour that night while Dan sat with him in hospital and the next day I brought them both home, tired but on the mend from this hideous episode. We began to tentatively use the word 'epilepsy' and reach out to others who had already walked the walk. And then the prayers began flooding in. Within minutes of Rufus's seizure at home I sent a rushed whatsapp message to a small group of faithful friends and the news spread like wildfire. During the time in which I had slammed the door on God, a prayer chain had been set up and numerous people within our church stood in the gap and pledged to pray for us for an hour at a time over the next few days. In fact I know as I write now there is someone praying for us. Last night I opened the door a jar and began to chat to God about how to go forward in trusting him. We still have a long way to go.
I cannot wrap all of this up in a satisfyingly neat little blog post because it is messy but I do know this: When my six year old daughter has a meltdown, when something goes wrong and cannot be fixed, she will often shout at me saying, "It's all your fault. You've ruined it and I'm really cross with you," even when I've had absolutely nothing to do with the chain of events. Why does she do this? Because she's cross with the world and there is a childlike sense of entitlement that the person who brought her into the world has a duty to make sure everything in her life goes the way she wants and runs smoothly. Because I'm her North Star and I love her despite whatever verbal abuse she wants to throw at me when she doesn't have the exact words or the understanding to explain why something hasn't gone right but she just needs a safe place to rant. And she knows that when she's done shouting, there's the offer of a hug at the end which she always takes me up on.
Could God have prevented these seizures? Was this his fault? Was I right to be angry with him? Why do bad things happen to good people? I am not in a position right now to try and make sense of why this has happened. I may never be. But somehow under all these layers of disappointment and anger I still believe that God is good. I may be mad, I may be right but I chose to open the door and invite him to join in the conversation with me again, bit by bit. Why? Because He's my North Star. He always has been and He always will be. Things have changed for us but He hasn't. I read recently in a parenting book:
"For centuries, sailors have navigated the vast openness of the seas by finding the one star in the sky that doesn't move. Even when everything in our lives feels out of balance and unpredictable, even when we have no idea what to do, or how things are going to turn out, we can always come back to our North Stars. No matter how far we have strayed, we can, at any point, choose to take a moment to get quiet and take a moment to orient ourselves back to what really matters."
I know deep down that He loves me and he loves Rufus and He's still good. Life is complex and sometimes really, really sh*t but He's not. I know that the last few days are just a tiny part of a huge story. It doesn't make sense but the dust will settle, the sun will shine and my boy will smile his famous smile again.