Today is Friday, which is traditionally a day I do a new blog. I felt this Friday couldn’t pass without a blog dedicated to Marigold’s grandmother, my mother, who would have been 79 today, 18th December.
Sadly, neither Marigold nor Harrison have ever met their maternal grandmother. She passed away very suddenly when I was in my early 30s. An aortic aneurism, it was instantaneous. Nearly ten years on and having worked my way slowly through the grief process, I can say that is probably the way we would all want to go. I just wish it hadn’t been quite so soon.
Grief is, as I say, a process and a journey. In 1969, psychiatrist Elisabeth Kuebler-Ross introduced what became knows as the ‘five stages of grief’: denial; anger; bargaining; depression and acceptance. And it is a similar journey when your child is given an unexpected genetic diagnosis . Maybe the feelings are not exactly the same, but I know when we received Marigold’s diagnosis of her unique genetic condition 3q11 trisomy mosaicism, I initially didn’t accept it. I was convinced it would have no impact on her health and development. This gave way in time naturally to anger and I tried hard to suppress those rogue feelings of “Why us? Why Marigold?” Last year, when Marigold was suspected of West Syndrome and was going through an emergency EEG, I actually spent some time going to church where I made various vows with whomever was listening that if she could just be OK, I would do all manner of things differently. I think that covers the bargaining point! Depression has been lurking throughout this process as the appointments, the ongoing health and development issues sometimes become overwhelming and often it is hard to see a clear way forward, especially when surviving on limited sleep due to said health issues!
But I am lucky that acceptance came pretty quickly early on for us with regard to Marigold, as who could not accept the beautiful, sweet-faced child she is. Despite all her health and development issues, she is so content and radiates such inner peace, capturing the heart of everyone who meets her. She goes through so much and always bounces back with a smile on her face and constantly amazes us with what she achieves, despite her challenges.
Yes, we could all learn a lot from Marigold. I know I have.
I often wonder how my own mother would have reacted to a child with needs like Marigold’s. I think she would have found it hard both to watch what Marigold goes through sometimes but also to watch me trying to deal with it (often badly) as even as a grown up, I would still in her eyes have been her baby girl. But I know as with everyone else, she would have fallen deeply in love with her and been unfailingly devoted to her enchanting and unique granddaughter.
My mum was what you would now call a ‘stay-at-home mum.’ She devoted her life to her family and caring for us. Only now as a mother myself, do I realise how lucky I was to have a mum who was 100% there for me every day, from walking me to school in the morning, to picking me up at the school gates, taking me to all my after school classes, making sure I had my favourite treats in the house to eat at all times and cooking us family dinners we all ate together every evening. We never ran out of anything, she was always home waiting for us, waiting ON us usually hand and foot whilst we bossed her around. She made time for everything that was important, reading us endless stories, baking cakes with us, taking us on outings and generally making our childhood magical and secure in only the way a mother can.
She was also a famous character. I know those of you who knew and remember my mum would be disappointed if I wrote this without mentioning the obsessive need to date all items, her love of talking (the ability to start a conversation with anyone a gift I *may* have inherited), pots of tea and the extensive tea cosy collection, the dishes for the bird table and compost heap (she was ahead of her time, everything was recycled, nothing ever wasted) bargains, vouchers, 2-for-1 offers watching the news and listening to Radio 2 and Classic FM in the kitchen whilst doing the washing up until 1am in the morning. She was hilarious and eccentric, she sometimes drove me nuts but I always, always loved her.
I feel sad today Marigold will never know her grandma Burness. But also feel lucky she has a such a wonderful paternal grandmother, her Dadi, who is without a doubt one of her favourite ever people, and who, as a mark of her devotion to her granddaughter, just recently got a tattoo of a Marigold flower. At the age of 76. How cool is that?
So happy birthday today to my late and great mum. Not a day goes by that I don’t think of you and although you are no longer with us, your grandchildren will grow up knowing all about you and hearing all the stories of the times we had together.
A friend posted this on FaceBook the other day and it seemed like the perfect way to finish:
‘Your mother is always with you. She’s the whisper of the leaves as you walk down the street. She’s the smell of certain foods you remember, the flowers you pick, the fragrance of life itself. She’s the cool hand on your brow when you are not feeling well. She’s the breath in the air on a cold winter’s day. She is the sound of the rain that lulls you to sleep, the colours of a rainbow. She is Christmas morning. Your mother lives inside your laughter. She’s the place you came from, your first home and she’s the map you follow with every step you take. She’s your first love, your first friend, even your first enemy, but nothing on earth can separate you. Not time, not space…not even death. – UNKNOWN