The hardest lesson in life to bear.
It touches us all in one way or another.
No one can live a lifetime without feeling its wrath.
Some, sadly, more than most.
I remember a period in my twenties, just after my dad had died, when it felt like everywhere I turned someone else had lost a loved one. The funerals kept on coming and each time you felt whisked up in a hurricane of emotion only to land again a week or so later to an eerie calm and carry on with your day.
But when it’s your hurricane, when that Act of God has ripped a hole into your life so vast that it physically hurts, when all that is left is a hollow painful ache in your gut, when the noise in your head is too hard to bear, there is no calm after the storm. When the wind settles, the world is not one that you remember. Even if you are surrounded by family and friends, your grief is your burden alone. It is largely a solo expedition with a few companions to sooth your soul along the way.
Saying goodbye to a loved one is beyond compare. Yet with adults there is a sense of a life at least lived. Memories and landmarks to recall. Events and conversations to take comfort from.
But when it is the death of a child or a baby then that is a journey no person should have to endure.
Twice now I have stood beside members of my family and watched helplessly as little white coffins have been carried into a church.
Without doubt they are two of the most heart breaking moments of my life. And yet I was just really a spectator; a cousin, an aunt. I could return back to some reality while these beloved people had to deal with an agony I could only guess at. With every breath (then and still now) they grieve their lost babies. It doesn’t go away – it is a lifetime sentence.
And the memories of both have come flooding back this week with the news of another baby girl being taken to heaven.
This special little girl, who had just turned one, was part of SWAN UK. This is a support group I joined a year ago. When I arrived at the doors of this community I was quite battered and bruised from endless tests for Gabe (many for rare life-limiting disorders) but I was largely out the other side. He had just turned two, his health was improving and many of our fears for his long-term survival were shelved away in my brain (up high where they could get as dusty as they liked).
I chat daily to my fellow SWAN members sharing bits of information, asking advice, applauding the tiny development steps of the children, showing compassion and understanding when things go (or feel) wrong. It is there that I turn when I feel riled by health professionals, frustrated about test results, anxious about progress or even just fed up of living a life that includes wheelchairs, therapists and special schools.
There is always kindness. Always. In spades.
The news of the passing of this precious princess (who I never got the privilege to meet) has rippled wide amongst us. We ache for what her family now have to endure. We wish we could take away some of the pain and suffering to come. We can’t.
But there has been a different after-effect of this tragedy. One that is more subjective and personal. Many of us have watched as those (not very dusty) fears have tumbled back down from their high shelves and burst open before us.
And what they have scattered on our laps is this:
We do not know what is wrong with our children.
The mechanisms of their bodies that cause their disabilities, their limitations, their struggles are so rare that tests to detect them have not yet been invented.
We do not know whether these bodies will therefore keep up.
Whether they will one day give up.
There is no collective before us that gives us a hint what lies ahead.
Each one of these children on SWAN is different and extraordinary, but all are united by the fact we live in the unknown.
That is not something you can dwell on every day. You just can’t.
But right now as we mourn a little girl that touched our hearts in different ways, we can also acknowledge that every moment with our special babies, made quite uniquely, is a gift.
One to treasure and cherish.
John DeFrain, American author and university professor