By Sara Meredith
My name is Sara and unfortunately due to this crazy thing we call life I have become an expert on grief and child loss, both I had no desire to know so well.
On November 7, 2008, I walked into my daughters bedroom at 4:00 a.m. to find her not breathing. After calling the paramedics and watching her being whisked into hospital less than a hour later, we were told our beautiful girl had passed. Nothing could have prepared me for the pain of that moment. I wanted to take the words from the doctor’s mouth and bury them deep in the ground never to be unearthed.
We didn’t have a reason for why our beautiful girl passed and it took a number of months until we did, but in that time we faced comments that almost destroyed me. “Oh well she did have Rett Syndrome, she did well.” “Oh bless her she is free from pain now” or the one that broke me “you probably were expecting this.” What in the world?
You see, if your child has a disability, condition or illness it seems that the loss of them is meant to hurt less. That you have somehow managed to prepare your heart to lose them, that it’s okay because it was expected. No and more no.
A disability does not make the loss less in fact when you care so closely for your child, when every moment of your day is meeting the medical, physical and emotional needs of your child their passing not only takes your child from you, but also your identity, your purpose.
A little while after losing Livvy, as a family we decided to foster children with complex needs in the hopes of doing good in the world, but again helping us find our purpose once more. My reason for joy again came in December 2015 when we cared for a disabled baby for the weekend. A baby so fragile his life had been spend mostly in hospital, a little one so used to being passed around he didn’t engage or attach. A baby that won my heart the moment he snuggled into my chest. Our placement had only been for an emergency weekend and when I had to hand this gorgeous boy back to his full time foster carer, my heart broke a little. I mean “pull yourself together Sara, you have only had this boy for two days” is what I told myself. It didn’t make sense I had children for a lot longer and had not felt this way before, what was I doing?
Thankfully, fate and my heart became entwined when two days later we were asked if we would consider fostering this little boy full time. That little boy who won my heart that day became my son officially on June 28, 2017: Daniel Robert Meredith.
Caring and loving Daniel was a gift. He was so complex medically that doctors and nurses were scared of his needs. Yes, it required intense attention to keep him happy and healthy, but emotionally this gorgeous boy needed to feel safe, needed to trust and needed to bond. And my goodness, bond we certainly did. He had my heart completely.
When Olivia was young, I had come dismayed at the number of blogs out in the virtual world which were sad and depressing regarding having a child with a disability. So much you cannot do, the complete opposite of our family motto “never say never.” So I decided to start my own blog and through that shared the adventures of our family.
I wrote about how we all went ice skating and about how Livvy loved to go so fast on the ice. Where she wanted the professional skaters to push her wheelchair because we were mere amateurs and were way too slow. How we took her abseiling, canoeing and so many more memory making moments. I shared about her escaping from our tent when we went camping and also how she became known as the biscuit thief.
I shared our hard times as well as I didn’t write to create a false narrative. There were moments where the exhaustion broke me or her seizures scared me, but it was imperative that I shared the joy too. This was done to encourage other families like ours that a diagnosis doesn’t mean the end of a joyful life. Yes, life will look different, but sometimes different can be beautiful.
Then, on November 7, 2008, the narrative on my blog changed. I continued to write, but this time, it was words of grief and pain. I challenged the narrative that losing a child with a disability was something you were prepared for. I shared my heart transparently in hope of giving others permission to do so. Grief isn’t a dirty word that should be kept behind closed doors. Grief is a the valid emotion of missing. I shared my pain and I’m so glad I did because it was from this that I started to receive letters from people thanking me for being so open and honest.
They said that by writing about the bad days, I had given them hope. One mom was in so much pain that she was planning to join her child and when I had written about just getting through the next moment, minute, hour and day, she had chosen to stay. You see, when you are open and transparent and vulnerable it gives others the freedom to do the same.
So writing for me became my therapy and my freedom and thankfully it gave the same to others. Personally, it was to be tested when on April 27, 2022, I lost my beautiful boy Daniel to COVID-19, and I found myself again in the midst of hell. I mean I had just about survived the loss of Livvy and I wasn’t sure I could do it again. How do you find words to express the agony of losing another child?
You just write. Write out the anger, write out the pain. It doesn’t have to make sense, it just has to be your heart. Allow the words to free you. Grief cannot not be hidden, it refuses to hide. It has to be felt, to be freed and to be.
A year on from losing Daniel and I’m still writing. Writing in hope of making sense of my pain. Writing to try and find my purpose in this world again. Writing to just be free and if anyone finds comfort, solidarity in my words that that’s brilliant but right now I am writing for survival because without words my children would cease to be. My words allow me to hold them tight, but it also allows me to validate the agony of my grief. Sharing my heart makes me feel less alone in my pain, and thankfully, it allows others to feel the same. Writing can be therapy for your soul and for others too.
For more information about Sara, you can check out her website.
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