This is dedicated to my two daughters.
Our home in Devon is where we should be, a peaceful safe haven with beautiful sunsets, pink misty mornings and rainbows that only we could see.
Then, seven years ago, along came severe M.E. It destroyed all we knew. It took everything away from us. Our home, our friendships, our places, our life. We had to leave it all. My dreams for you have been shattered into millions of pieces.
Reality is so far from how life should be. I am watching you grow from toddlers to tweens, from a place I really wish I didn’t know. An oh, so isolating, lonely place, sequestered from life and mostly from you, in a dark, quiet, solitary room.
But for this moment, let us imagine, before we knew what was about to enter and wreck our lives.
So here we are at Teignmouth Beach, one of many of our favourite places. You are two and three years old. Bright sun sparkling on the water, gentle waves lapping on the shore, vast vivid blue skies stretching on forever. We inhale deeply and absorb it all. Shoes off, socks off, clothes loosely folded and stuffed into our bag. Wet suits on, sun cream on, we run, laughing towards the water. In we go, gosh, it’s cold! I am in the middle, holding on tight to each of your hands and here comes a wave… jump! and another…jump!. We squeal with delight and glee. We are exhilarated, euphoric, happy, free.
We’re building sand castles, digging moats, writing in the sand, watching boats. We buy an ice cream from the van and one of us drops it in the sand. We peer into inky rock pools and see crab, shrimp, anemone. Look, a starfish. Can you see? Oh my, look, look, there’s three! That really was a special memory. We beachcomb for pebbles, shells, sea glass, until it’s time to leave at last. We wind our way home along the lanes, happy and content. What a wonderful day. How lucky we are to live right here, to have the coast so very near.
And now? Now my body is shackled to severe M.E. I’m trapped indoors and so far from the sea. Will I ever be free of this disease? Will I ever be able to walk? Will I ever be able to run? Will I ever be able to live life again? Will I ever be able to be your mum?
My illness affects you profoundly, each and every day. Your carefree childhoods have been stolen away. It is a crippling burden for you to bear. We are all so broken, but this is my prayer. That one day we will be together at Teignmouth Beach, playing in the sand, swimming in the sea. Let’s at last once again, know we can be euphoric, happy and finally free.
