I was so excited to be pregnant with my first baby. Expectations and hopes all held so tightly in those first few weeks where you tell no one, apart from those closest to you. You are carrying a miracle inside, and your whole world has changed. I assumed, naively, that my journey would be smooth. Losing a baby was not on my agenda, and so when I began to bleed and the loss unfolded, the blow felt brutal. After eleven weeks of pregnancy, I was told my baby had already died and then we waited the excruciating days that followed, as my body clung onto the life that was not going to be. 

Eventually, the bleak process of losing our baby physically came to an end, as my body finally gave up this dream. I lay in my bed after it was all finished, a weeping mess.

It was then the quietest but strongest of words came right into my soul.  “Emmanuel”. That one word that contains everything.

 Nothing can change the fact that this is the journey you are now on. No magic fairy dust to take away the pain. It’s a cruel grief and it needs to be walked through.

But… Emmanuel. “I am with you in it”.

And then, that ‘peace that transcends all understanding’, showed itself to me.

A withness that brings peace when there should be a complete lack.

The following year fresh hope came with another pregnancy, and we were blessed with a beautiful boy, Joseph. We left London and moved to a vibrant town by the sea where my husband was working hard as a teacher, helping to set up a new school. I was working part time as a nurse and looking after our sweet boy. Then the rug got pulled from under our feet.

My husband had a brain haemorrhage when he was thirteen. He’d made an incredible recovery, against the odds, overcame brain surgery and all the rehabilitation that followed, learnt to walk again and function with a damaged brain.  When I met him, in his thirties, he was fit and strong, but then his health crumbled again, spectacularly. His first seizure was terrifying for us both. Then they came thick and fast, landing in a few days in intensive care followed by a month on a neuro ward, and the slow realisation that this was going to be a long-haul recovery. We had no game plan and no idea what recovery might look like. 

He came home, in a wheelchair, standing up or walking often triggering more relentless seizures. Slowly he got stronger, and the future looked more hopeful. We decided to have another child. Age wasn’t on my side, and we wanted to have a larger family, trusting Matt would get better and we could get back to what might resemble a more ‘normal’ life. We clothed ourselves in gratitude and hope like battle armour.  It would be hard, but we were up for the challenge and the trusting. But as the pregnancy went on, Matt didn’t get better… he was struggling to function for more than a few hours, without having a seizure and needing to sleep long periods to recover.

Then my second child, another boy, Zachary, burst into the world, along with the unexpected news that he had Downs Syndrome. I remember thinking ‘we were already meandering off script, but we are well and truly off piste now’.  Life’s going to look different. Very different.  It’s just gone from hard to harder.  My husband has a chronic illness and disability and now I have a newborn whose challenges are yet known to me, but likely to be significant.’  A few years later Zachary was diagnosed with autism.

Life is beautiful and life is hard. Beautiful-hard. They both co-exist, like dancers, weaving themselves in and out of our lives. The joy is that God is with us and others have joined in. I always say “on paper we don’t sound that great” but the reality is so different and so much more beautiful than it might sound.  Our day to day is transformed by withness; when friends come along side us, and travel with us for a while at the slower pace that we’ve been forced to go, navigating the hurdles and the curve balls.

Matt’s seizures are debilitating. The daily grind of a chronic illness is often lived in secret, behind closed doors, in the hidden places. Parenting a child with special needs, while trying to be everything you want to be to your other child, is exhausting and can feel lonely. On a bad day it can all feel crushingly hard, but on a good day it can feel like you are in on the most beautiful secret of watching your family do life differently with our challenges and unique way of being. Knowing your difference is seen by others and they are with you, is sometimes enough to face what you have to face.

 The other day Zachary and I were sitting crossed legged on a cold winter pavement, watching cars go by. Zachary had refused to hold my hand to cross the road safely and had sat down in protest, twirling his long length of ribbon like the day had no agenda whatsoever. We were simply sitting it out together, until he was ready to try again.  Withness can be slow – a patient letting go of where you think you should be and allowing yourself to be where God wants you to be, with who he wants you to be with. A passerby gave me a warm, knowing smile and carried on past. That was all I needed, in that moment for this little silent protest to be transformed.

Being with someone who is not finding life easy or is trying to live in a world not set up for them can take you to what I now call the “secret places”. The places you might never have chosen to be in.  Sitting with Matt, on the floor at a friend’s house, waiting for him to recover from another seizure, as the party seems to go on around you, but without you. Unseen in the secret place. Slowing down; slower than might have been previously comfortable for you, to be with someone at their own limited pace.

Coaxing a child with autism to watch a Christmas show you have paid good money to enjoy. Our seats, surrounded by people and lots of noise, make it all too overwhelming for Zachary. So we sit in the quiet, on the stairs, where no-one pays to sit, watching the show from our secret place. We hug and cuddle quietly as the show goes on and it feels somehow almost a sacred moment. These secret hidden moments are where the gold is really forged. Where the love grows deep.  Withness blesses the person being held and the person holding.  But it’s hard. Beautiful and hard. But being with people mattered enough for Jesus to come to earth to embody “Emmanuel”.  And you get taken to those secret places you might not have ever seen had it not been for the journey the other takes you on. 

My eleven-year-old son has heard me say so many times “we are with you” to Matt as his body shakes into another seizure. Matt is usually unable to speak, often he looks afraid, and his usually strong body is jerking with such strength we need to keep him safe. But “I am with you” has become what I say. And I mean it. It’s all I can offer in those moments. I can’t take it away, but I can sit with him in the pain and disappointment of another disrupted plan, another unfinished conversation, another fun trip cut short, another day where we watch the world bustle on as we crumple to the floor.

My Joseph has learnt the art of being with. He will often silently take my husband’s hand, and my heart melts when I hear the strength and tenderness in his words, “I am with you Daddy. We are here.” As Jesus showed his Emmanuel to me, and the beauty and peace that brings, we can show it to each other.

And others show it to us, and it transforms our days. The family that paid for us to go away to a holiday centre for children with autism. The group of friends who cooked meals when my husband had an accident and prayed with me when Zachary was in hospital fighting another chest infection. The couple who invited us to stay in their beautiful cottage when we needed to take a breath. And the lady from our church who arrived in intensive care at midnight with a wash kit and toothbrush for me. Family who sat for hours holding my children.

They are God’s love expressed “as with”. And the hard becomes the beautiful-hard; somehow. And the Peace that transcends all understanding can be a reality for us.

Emmanuel surely is the most answered prayer amongst the many unanswered.