Your world shatters. You find yourself alone. You see pity and sympathy in the eyes of family and friends, but they do not understand. They hurt, but their hurt is not your hurt. You search for others who share your story. You try to normalise the thing that is so far from any sane normality. You find them. Online and in person. This community of loss. This beautiful and fragile community of tattered souls. Facebook groups, blogs and forums dedicated to babies and children stolen from their mothers’ breasts and their fathers’ embraces. And there is such aching beauty. Words strung together as delicately as beaded necklaces. Artwork that touches deep nerves. Poems and images that steal your breath as they gift you tears. Enormous and important things achieved in the name of children who may no longer live on earth but whose impact is great.
But through this thin veneer of beauty, do we hide from ugly truth? Do the newly bereaved come across these sites and wonder where the pain is? Where the heart-stopping, gut-wrenching, puking, sobbing messes are? I don’t think I have ever written publicly about the true pain of grief. The darkest of days, where even the weight of water in the shower was too much to bear. When my skin crawled and the ache in my arms to hold my baby felt like the loss of a limb. When the only relief could be found in sleep and the sleep would only come when I was too exhausted to think. I cannot convey in words the pain of those days. I remember wanting words. Yet, no words were horrific enough to capture the pain. I do not swear, I never have. But even the worst words I knew could not scratch the surface. There isn’t even a word in the English language to describe a parent whose child dies. There are orphans and widows and widowers but no noun for those who lay their children to rest. And as I searched for a word ugly enough to sum up the wretchedness I felt, words beautiful enough to describe my baby boy also remained elusive. Perhaps that is a struggle felt by many who populate those online groups and forums. How do you express a pain so horrific in the place you are recognised as mother to your child? How do you articulate the depts of hurting when you also want to celebrate your baby? How do you find language that isn’t repressible and offensive to describe something so bitterly broken? How do you reach out and seek comfort when you want to spew barbed wire and bile and venom? How do you tame the rage and the anger to a gentle simmer to remain polite amongst people who share common ground but are, for the most part, strangers?
For those in their grief who find comfort from the beauty, but wonder if they are lost alone on an ugly path. Please know, you are not alone. There are just no words to capture the depth of the hurt just as there are no adequate words to capture the enormity of the love. For the pain and the grief run deep because the love never ends.
How do you celebrate a birthday for a person that you can no longer see?
There will be no carefully curated list of people who will share in your birthday. No beautiful invitations to send to friends and family. But there are those that will accept the unwritten invitation to share in your birthday and remember you. Those that miss you too. Those that grieve with us.
There will be no balloons and streamers hung. No theme will define your day. But I have made this hanger. It reminds me of you and it decorates your brother’s room.
You won’t unwrap a train set, or open your eyes to find your first bicycle. You won’t be spoiled by those that love you with earthly gifts. But I made you this prayer flag, as I have done in the past and will do each year. It is my gift to you and yours to me.
I won’t sing you happy birthday. There will be no chorus of hip, hip, hooray. But I wrote you this poem.
There won’t be two candles atop a cake. You won’t try to blow them out with your baby breath. But I will light a candle for you and others might too.
There won’t be a birthday party tomorrow as others might know it. But I feel your birthday to the very depths of my bones. A birthday is for letting someone know how much you love them. And I love you forever, my baby boy still.
On the weekend Elijah turned two weeks old. For our family this was a significant milestone. It’s the age Xavier was when we said goodbye. On the eve of Elijah’s 13th day – the morning we found Xavier without breath – Elijah was held all night long. My gorgeous sister stayed with me as we watched TV and waited out the sunrise. As the clock ticked over to 5am, I held Elijah close and wept with relief.
“You’re going to stay” I whispered, elated and sleep deprived.
N had pointed out that there was minimal chance of Elijah dying by SIDS and non-existent odds of him doing so at the same age we lost Xavier. But the heart and head sometimes follow different paths. Even though it makes little logical sense, I cannot help but feel that we have dodged a bullet.
The anxiety remains, and it probably will forever, but the feeling of certainty that we will lose Elijah has lessened. I will still wake in the night and check that he is breathing, but I am less surprised now to find that he still with us. When you have experienced the worst, it can be hard to have faith in the future. But I am slowly finding that faith. I do not believe our lives will be perfect from this point onwards. I have seen too many people go through multiple losses to believe that our angel children look after us from afar and protect us from any future pain. Life doesn’t work on a series of checks and balances, nor do tragedy and deservedness have any bearing on each other. I cannot look into the future and know what it holds. But I am sure there will be both beauty and pain, laughter and tears. So I can face the future with fear or with hope and I am going to choose hope.
I wrote these affirmations to help me with my anxiety – they might help other parents too.