This update is possible due to the help of Sarah.
Things are becoming ever more challenging. Twelve months ago, July 2015, I was able to walk with the help of a stick, my arms and hands were fully functioning and my speech was normal. Now I can take only a few steps with a walking frame, I can just about lift a fork with my right hand and speech is slow and laboured. Everybody is finding amazing strength to keep going. It’s almost unimaginable that our family finds itself in this situation.
Many thoughts come with living with a terminal illness. How will it be not experiencing the world we live in? I guess it’s something we’ll never know. We live in a world of fear, but there’s really no point fearing anything. I like the man at the fruit market in Berkhamsted. “What do you think about the EU Referendum?” I ask him. He tells me he gets up at 2am to go to the wholesale market and he makes his own luck everyday.
I love the banter of the fruit and veg stall. “Get the Tom and Jerries out the front” ( you can guess what he means) . “Big bunch of banana £1.50, juicy plum £1” in the lingo of MHSmith not a plural in sight. This is real retailing, fast thinking and plenty of chat with the customer.
We had a thank you party on July 3rd; people helping us came from near and far. Great to see new connections being made; so many great people together. Live music, tasty food, fruit punch, a beautiful venue, chatting outside in the sun. Somehow it all came together. After sitting for several hours, I tried to walk with Jampi. The feet did not engage. Fear strikes. Is that it? I had been speaking a lot so maybe the energy went there. Next day my walking was back to “normal”. Fear doesn’t help. Everybody did their part to make the thank you party a memorable day. Thank you. Plenty of visitors. Jay comes from Miami and we spend a great day together, including a cheeky half at The Old Palace. He introduces the kids to The Miami Heat, they sport new basketball tops. We talk about faith, challenges and purpose. Marcos, with his huge smile, visits from Madrid. Pippa stops by and we have a good few hours together.
As a parent I want to be able to impart wisdom to my kids throughout their lives. In my case this may not be possible. I’ve shown Valentina the importance of democracy as she drew the X next to the word Remain on the ballot paper. I showed them both that betting is a fool’s game by putting £10 on Wales to beat Portugal 2-1. As for other wisdom, I’m planning to stick around as long as possible, plus there are many, many other people who will help them on their way, not least of all Jane.
The end of term at school is a marvellous time. Jumping over the fire, sports day, concert and celebration, leaving parties for the children going to a new school, thank you cards, the satisfaction of a good year done. Find out how amazing it is for yourself. How much better the world would be if Waldorf schools could be available to everyone with no charge or government interference.
We continue to see truly remarkable people selflessly helping us. The illness is relentless and our need for help increasing. We appreciate the people who stand by us.
When I look back over the last twelve months we have totally changed how we live, remodelled the house, negotiated critical financial arrangements, understood and worked with a less than integrated health system and somehow kept going through it all. I could not be more proud of my family, though it’s not really about pride, and more grateful to those helping us. To end, I never thought that my 88 year old mother would feed me my breakfast again, but this happened 3 days ago.
The following text was read out in church last Sunday. It’s about following your passions. I include it here for Valentina and Sebastian, but I think you’ll find it helpful too.
‘Being the person God made us to be’
“God’s voice thunders in marvellous ways; he does great things beyond our understanding. He says to the snow, ‘Fall on the earth,’ and to the rain shower, ‘Be a mighty downpour.’” Job 37:5-6 (NIV)
For a season in my life, I tried desperately to be a professional, buttoned-up, organized-type person. I wore slacks, for heaven’s sake. I white-knuckled a schedule and a set of responsibilities that felt like wearing someone else’s too-tight shoes. I’m amazed, when I look back now, how long it took me to realize I was playing a part, acting like someone different from the way God made me to be.
I’m messy and loud, a hugger and a crier. I like stories and meals and have absolutely no sense of routine. It was a gift to finally admit that I wasn’t made for that job, despite how much I wanted to be.
What would it look like for you to admit today what you are and are not made for?
I love today’s key verse, and I love the freedom and grace that flood through me when I read it.
So God says to the snow, “Fall on the earth.” That’s it. Just do one thing. Just fall. And then He says to the rain shower, “Be a mighty downpour.” Essentially, He’s saying: Just do the thing I’ve actually created you to do. You’re rain … so rain. You’re snow … so snow.
I love the simplicity of that, the tremendous weight it takes off my shoulders. God’s asking me to be the thing He’s already created me to be. And He’s asking you to be the thing He’s already created you to be.
He doesn’t tell the snow to thaw and become rain, or the rain to freeze itself into snow. He says, essentially: Do your thing. Do the thing you love to do, what you’ve been created to do.
So many of us twist ourselves up in knots trying desperately to be something or someone else. Trying to fulfil some endless list of qualities and capabilities that we think will make us feel loved or safe or happy. That’s an exhausting way to live, and I know because I’ve done it.
What is God asking you do to? What is the thing God created you to be?
What do you do with the ease and lightness of falling snow? Many of us, if we’re honest, have wandered far from those things. We’ve gotten wrapped up in what someone else wanted us to be, what we thought would keep us happy and safe and gain us approval.
I’m finding there’s tremendous value in travelling back to our essential selves, the loves and skills and passions God planted inside us long ago.
When I look at my life, I see the threads of passion and identity I’ve carried through my whole life: Books and reading, people and connection, food and the table. These are things I’ve always loved, and they continue to bring me great joy and fulfilment.
Think about your adolescent self, your child self, the “you” you’ve always been. God imprinted a sacred, beautiful collection of passions and capacities right onto your heart: What do you love? What does your passion bubble over for?
Much of adulthood is peeling off the layers of expectation and pressure, and protecting those precious things that lie beneath. We live in a culture that tries to define what it means to be a woman, what it means to be a success, what it means to live a valuable life.
But those definitions require us to live on a treadmill, both literally and figuratively, always hustling to fit in, to be thin enough and young enough and sparkly enough, for our homes to be large and spotless, our children well-mannered and clean-faced, our dreams orderly and profitable. But that’s not life. That’s not where the fullness of joy and meaning are found.
The snow is only meant, created, commanded to fall. The rain only meant, created, commanded to pour down. You were only meant, created, commanded to be who you are — weird and wonderful, imperfect and messy and lovely.
What do you need to leave behind, in order to recover that essential self that God created? What do you need to walk away from, in order to reclaim those unique parts God designed for His purposes?
Dear God: Today, give me the courage to live the life You’ve called me to with the same contentedness and confidence as the falling snow or the pouring rain. Please help me to walk away from roles and expectations that other people have for me, and to live in peace with the exact way You created me — on purpose and for a purpose. In Jesus’ Name, Amen.