Today is National Bereaved Parents Day which aims to raise awareness of all parents who have lost a child of any age, and from any circumstance. The theme this year is ‘Keeping Their Memory Alive’. As a bereaved parent, one of the most important things to me is to be able to talk about Jessica, and to hear others talk about her and remember her. To know that others remember that my daughter existed; to be reminded that others still see us as having three children even though only two are earth-side with us.
Jessica was a joy-carrier. A little girl who was born with half a working heart, but that heart simply overflowed with love. She was our little miracle. For those who are newer to my blog, this is a quick summary of Jessica’s story:
Jessica was born with a congenital heart defect called ‘hypoplastic left heart syndrome’ which basically meant she had half a working heart. We were told during my pregnancy with her that she was unlikely to be suitable for surgery and perhaps wouldn’t survive to birth, but were given a glimmer of hope thanks to pioneering in-utero surgery at 28 weeks’ gestation. Jessica had her first open-heart surgery at just a few hours old, followed by another surgery a week later. She had two more major surgeries during her first year – one at 14 weeks’ old and the next at 7 months’ old.
For the next few years we enjoyed a fairly normal life. Jessica had regular cardiac check-ups and a few hospital stays throughout this time but on the whole she was fairly healthy; a wonderfully smiley little girl, with a huge zest for life. Her heart-healthy little sister Sophie was born when Jessica was two.
The girls had such a beautiful bond and adored each other. We knew that the future was uncertain though. Jessica’s next planned surgery started to loom on the horizon as she got older.
At Christmas 2017, we told the girls that we were expecting another baby. They were so excited. A couple of days later, Jessica had her final planned surgery. She recovered well from this and we were hopeful that we could look forward to a few more years of normality without the prospect of surgery hanging over us. Sadly it was not to be.
A couple of months after the surgery, Jessica became unwell with a cough and cold virus. For the next few weeks, we were back and forth to the doctors as she struggled to shake it off. She had moments of perking up and seeming to improve but would then become unwell again. One night, she woke up coughing, came into our bed for a snuggle and then suddenly collapsed and died. She was six and a half years old.
She never got to meet the little brother she longed for. Thomas was born three months later. He recognises his biggest sister in videos and photos, but sadly he’ll never know her although we do our best to keep Jessica’s memory alive as much as we can.
Keeping their memory alive
Although Jessica is no longer physically with us, she is still very much a part of our family life. We talk about her often; we look at photos and videos of her and have little chats with her while sitting at her forever bed. Thanks to the magic of Photoshop, we have photos on our walls of all three of our children together. They’re moments that were never possible in life, but it gives us a glimmer of what life might have looked like if Jessica was still here with us. We also still include her in our monthly family and siblings photos.
At her funeral, we invited people to write down their memories of Jessica on little paper hearts. One of the loveliest things about this was reading about little moments that weren’t part of our own memories, or that we had forgotten about. Every now and then, we look at those paper hearts again and read those memories and it gives us such comfort.
One of the hardest things about living life without Jessica is the absence of new memories. Knowing that all we have are those past moments; not being able to make new memories with her. Every so often though, someone will share a photo that we’ve never seen before, or a memory of something that is new to us. Those little moments are such precious gifts.
It’s important for us to be able to talk freely about Jessica. It hurts me that people can be hesitant to mention her name, or do so with awkwardness. I love it when people talk to me about Jessica; when they talk about her as freely and easily as they did when she was alive. I think some people worry that by mentioning Jessica, they’ll remind us of our grief. What they don’t realise is that they can’t remind us of something we never forget. Grief is a part of our everyday life, part of who we are now. We have had to learn to live alongside grief.
Being a bereaved parent can be a very lonely experience at times. Child loss and grief can feel like such a taboo subject. That innocent question “how many children do you have?” heard when encountering another parent at the park or out and about, is one that can be a minefield for a bereaved parent. I’m faced with two choices: to not mention my eldest daughter and feel like I’ve denied her existence, or to talk about her and face the inevitable awkwardness. I generally choose the latter. Jessica did exist, she matters and I want to be able to talk about her, to share her story and to let others know that child loss is something that can be openly talked about. To keep her memory alive. Because the memories of her time with us are amongst the most beautiful ones I have and will ever have.