Words. Words have the power to build us up and to tear us down. They bring joy and laughter, sometimes sadness, sometimes hope. They can unite us, divide us, inspire us and ignite us. They can connect us and help us to understand our world, this weird, wonderful, bewildering and cruel world.
It’s one of the reasons I started this blog. There were words in my head that needed to come out. I hadn’t known what to do with them. They flew this way and that looking for a home and never quite finding a resting place. Finding a connection in the words of others encouraged me to start writing it all down. And the connections grew, blossoming behind the screen into friendships.
Over time I imagined this would become an uplifting, hopeful place, full of laughter, encouragement and joy as we traced our path through raising Orange, giving other families hope too, perhaps, that this will be ok. You are not alone. There is always hope.
But it can be all too easy to paint a picture. To gloss over the hard bits for fear of bringing people down or perpetuating the myth that life with a disabled child is nothing but tragic and awful.
Which it isn’t.
There is joy, there is hope, there is laughter, there is love. But there is also pain, there is also fear, there is also sadness and there is also loss. Because that, right there, is life.
Pretending everything is marvellous all of the time would be, of course, ridiculous. But more than that it can lead us to feel that we should always be thankful and joyous and full of gratitude and aren’t we lucky all of the time.
That the answer to ‘how are you?’ should always be ‘good, thanks‘. That we should quickly move on from difficult emotions well before we are ready.
While a little bit of gloss can be uplifting, go too heavy and it quickly becomes isolating. Silencing.
Sometimes when people are in the greatest of need.
Because words are at their most powerful precisely when the chips are so far down the cliff you wonder if they haven’t actually drowned. It is in these moments, when simple words on a page, told truthfully, letter by letter, can keep your head above water, even when your heart is in the sole of your boots.
For much the same reasons as my friend Alison, I haven’t written anything since June. In her beautiful and honest writing about friendship after loss, she has captured tenderly why neither she, nor I, have written over the summer. Our heads and hearts were full of someone else’s story, that wasn’t ours to tell.
But also, I really didn’t know what to write. Because I panicked and wanted to gloss. To paint over the pain, the fear and the loss facing dear friends to make it go away. That if I just imagined hard enough that it would be ok, if I hoped high enough, that a miracle would happen, that magically life would somehow return to normal and they wouldn’t be saying goodbye to their little boy.
I couldn’t do that.
But I can do this.
I can promise to listen.
I cannot know the depth of your grief but I can see you through your tears. I am here. I will ask you how you are, don’t hold back, dear friend. I am here.
I can promise to be patient.
Grief is the proof that you loved well, dear friend. Time has no place here in judgement. While you grieve, I grieve with you.
I can promise to lift you up when you are ready.
I cannot know what the future will be, dear friend, for you nor I. I cannot try to fix the unfixable. I do not have the answers. There is no handbook. But I can be here beside you and I promise to be present. I have no expectations of what your grief should bring. If you need to vent, I am here, if you need to cry, I am here, if you need to laugh, I am here too.
And when you are ready, dear friend, I will be here with words of hope and encouragement. I may not always get them right but I promise to try.
Most of all, I can promise not to gloss.
So, dear friend, I will not try to distract you from your grief nor hurry along your tears. While I am far away in distance I am with you in this. I will not shy away because I cannot find the words.
“Remember, that grief never asks you to let go of love” Ashley Davis Prend