Louise George lost her daughter, Jessica, to CHD in April 2018. Born in 2011 with Hypoplastic Left Heart Syndrome, heart warrior Jessica fought bravely for six and a half years. Here, Louise writes a beautiful and heart breaking post about facing her first Mother’s Day as a bereaved mum:
Last year on Mother’s Day, my eldest daughter Jessica made me a watch. A beautiful pink cardboard watch, with white stick-on pearls on the strap and a few extra hours added to the numbers on the clock face. What mum wouldn’t like some extra time in the day? It was a gift made with so much love and Jessica was so proud of her creation.
Life felt good back then. Jessica was the other side of her last planned heart surgery. She and her little sister Sophie were looking forward to welcoming a new sibling, due to arrive in the summer holidays. We were full of hope, daring to look ahead. Excited (and a little nervous!) at the thought of becoming a family of five. Life was about to change. What we never expected was that our family unit would suddenly be completely shattered. That our dream of life with three children would never become reality.
Jessica was born with a congenital heart condition called Hypoplastic Left Heart Syndrome (HLHS).
She effectively had half a working heart. During her life, she battled through several open-heart
surgeries, the last of which took place in December 2017. She recovered well and returned to school.
Shortly after her return to school, she became unwell with the first of several viruses. After a few
weeks of battling virus after virus, she unexpectedly collapsed and died on 14 April 2018. Her little
heart just couldn’t cope any longer – and ours were left forever shattered.
The last year has been incredibly tough. I often describe grief as being like a stormy sea. The life we
had last year is like an island – an island that I am forever exiled from. The waves take me away from
the island and no matter how much I want to return; no matter how hard I try to fight the waves and
the storm, I cannot stop drifting further and further away. There have been many, many moments in
the last year when the storms have raged around me. Days when I feel like I am drowning in the sea
of grief; days when the waves threaten to overwhelm me. Then there are moments when the storm
eases, the sea becomes calm and I am able to just drift along. Sometimes I can ride the choppy
waters and let them take me where they will. Sometimes I can anticipate the storms, but often they
come with little or no warning.
As Mother’s Day approaches, I can sense the storm brewing once more. The first Mother’s Day
without my beautiful big girl. How different family life is now. Two children will wake me up – but
not the same two children. Instead of Jessica and Sophie, it will be Sophie and Thomas – the baby
brother that Jessica never got to meet. Two children where there should have been three. A family
that is forever incomplete.
We would normally go to church in the morning on Mother’s Day. At the end of the service, the
children hand out little daffodil posies to everyone at church. Jessica loved handing them out. The
thought of watching the children hand them out and Jessica not being there with them breaks my
heart. I don’t know yet if I can bear to face this particular service this year.
There will be cards and gifts from Sophie and Thomas. I will take out the card that Jessica wrote last
year and read it again, run my finger over her name and put it with the cards from her siblings. We
will take flowers to her forever bed and sit and talk to her for a while. And later at home, I will take
out that watch, which is now one of the most precious things I own, and I will remember the love
that my big girl poured into this gift. This watch with extra hours added to it. The gift of time.
We always knew our time with Jessica could be short. Had her heart condition not been detected at
my 20-week scan, we wouldn’t have had those six and a half years that we did. We were told her
prognosis was poor; that she would probably only live a few hours. Jessica had her first heart surgery
when she was still in the womb – and it gave her a chance of survival. It gave us time with her – six
and a half wonderful years with our beautiful girl.
Jessica brought me joy every day of her life and I am thankful for the time that I had with her. It will
never be enough. And when I see people asking on social media – what do mums really want on
Mother’s Day? – there is only one answer I can give. A little more time. To be able to turn the clock
back and have those moments once more. If only that little cardboard watch could really create
Louise George writes about life as a bereaved heart family, pregnancy, parenthood, child loss, congenital heart defects, crafts, days out and reviews on her blog Little Hearts Big Love. You can also find her on Facebook, Twitter and Instagram.
Read Jessica’s story here.
Find out more about Hypoplastic Left Heart Syndrome here.