I have been doing a course recently (one of the many reasons blogging has taken a back seat) and learning lots about content and the need to grasp the reader’s attention in the first few sentences. However, I have made several attempts at a good opening paragraph and they have all failed, so I will go for the more overt approach.
PLEASE READ MY BLOG!
Do I have your attention? Great!
Lots has happened since the end of the year. We have been consumed with the ongoing EHCP process for Marigold to ensure we get the right provision in place for her when she starts school in September. As a professional, well-resourced woman / massive control freak, I have found it an unfathomable process, and I worry deeply about anyone going through the same who is not so well equipped to navigate the system – a piece for another time maybe. We have been upping Marigold’s therapy too with some private therapy for speech and OT to try and make some progress in this respect. Again, I am very mindful of how incredibly lucky we are to be able to resource this and get some individualized input in our own home, rather than make the EPIC journey across the borough to the development center. Being a carer for a child with complex needs requires so much time and dedication, it is so difficult for most of us to balance with other life demands.
Marigold is making great progress in Marigold time as always, but is still delayed in all aspects of her development. At the moment we are fixating on her speech, or lack of should I say. With school looming, the thought of her being non-verbal and unable to communicate her needs is the thing that keeps me awake at night the most. Recently I have had to make my peace with the fact that we might never hear her little voice. Speech is so incredibly complicated and so many of our unique children with rare chromosome disorders like Marigold (trisomy 3q11 mosaicism) never learn to communicate verbally. Yet her receptive understanding is getting stronger all the time and in some ways she really excels, matching her colours, recognizing names and letters and numbers…she really is such a mix of both brightness and being differently abled. I think she is taking so much in, and for this reason I must learn to control my road rage when she is in the back of the car. I would not like ‘You massive dumbarse!’ (or worse) to be one of the first things she says…
Oh, and we were on TV! The year kicked off with an episode of 24 Hours in A&E. Whilst it was hard to relive a hospital admission and also see my big shiny face in glorious technicolour, Marigold was heartbreakingly adorable and it did so much to raise the profile of children with rare chromosome disorders. Being contacted by people who had recently received diagnoses, then saw the programme and realized they were not alone, was the ultimate return. I hope all those people have found knowledge, support and friendship in Unique, the rare chromosome disorder charity. www.rarechromo.co.uk.
So that’s what’s been going on, but on today, International Women’s Day, a day that celebrates achievements of women worldwide, I wanted to write a blog which celebrated two unique females who have had the most influence on my life. The idea came from an old black and white photo my brother sent me recently of my late mother, being serenaded by what appears to be band of sailors whilst quaffing a large glass of white (does this sound familiar in any way to people who know me?) When I shared the picture on FaceBook, lots of people came back to comment how very much Marigold looked like my mum, and when I put their pictures together, I could suddenly see the resemblance in their faces: the wide-set eyes, the generous smile, the tiny nose…how lovely it is that now when I look at my daughter, I can always think of my mum. A woman and a girl who may not have, and may not, achieve anything on a global scale unlike some of the amazing women being celebrated today, but have in their own way achieved so very much, and deserve recognition.
I have written about my mother on here before. Like Marigold, my mother was absolutely unique. She had three children and was what I reluctantly call a “stay-at-home mum” (why have we not found a better term for this in this day and age I don’t know!) By that, I mean she did not have a career, which paid her money. She devoted herself entirely to running a home. Only now do I appreciate all that she did, which we took for granted. We NEVER ran out of food (thinks guiltily of times I look in fridge and am barely able to scrape a meal together.) We always had two types of bread, fresh fruit, fresh veg, several types of breakfast cereal, numerous fruit juices. She didn’t drive, but trekked up and down the high street every day to buy what we needed with her fold up trolley, stopping for many conversations along the way (again, does this sound familiar?) She didn’t have a dishwasher. She stayed up until 1am in the morning washing dishes and listening to Classic FM. Every day I was walked to and from school. I never wondered who was going to take me or pick me up. If there was anything at school, an open afternoon, a reading morning, a play, I never wondered if she would make it or not. She was always there. She built little rituals for us all every day, which I now realise created a huge amount of comfort and security. Maybe she did not reach the top of her career game, maybe she did not make an impact on the world politically or socially, but she was 100% eccentric and loveable and left a huge legacy of love and kindness, of what makes a mother. And as I find myself doing some of those comforting rituals with my own children, I hope these might be passed down future generations too. I wish I had had the chance to tell her all this whilst she was still here, but it took having my own family to appreciate all she did for us.
Skip a generation to Marigold, my unique daughter. Dealt a bit of a crappo hand genetically, everything is harder for her because of that little bit of extra genetic material. From communicating, to walking, to daily tasks we all take for granted, like eating or getting dressed. Because of her global delay, everything takes a lot longer to process. New and unexpected situations are hard. Last week the snow has presented a fabulous new sensory nightmare for her. I look at other children her age and it all seems so straightforward and easy (I know it is not!) The prospect of any child starting primary school is such a huge milestone in parent’s life, but I feel like I am literally throwing her to the wolves. Yet every day she astounds us with her ability to master tasks and to strive for independence. Maybe she has been denied that natural ability so many of us take for granted, but I am in awe of her perseverance and resilience. Maybe she won’t go to Oxbridge. Maybe she won’t do GSCEs. Maybe she will never learn to communicate with verbal speech and maybe she will always need support. Yet I know she is going to achieve amazing things in her own right, which everyone who knows her will be fiercely proud of and will change the way the world sees unique children like her. She is already doing this!
So on International Women’s Day 2018, my thought is this. How lucky I am to be sandwiched between these two generations of females who have, in their own subtle ways, made the world a better place, through their love, devotion, perseverance and uniqueness. You don’t need to do incredible things to leave a legacy and to make your mark in the world – just be the best version of you. Be authentic and above all else, be unique like my mother and Marigold.
For help, advice and support on rare chromosome disorders, contact Unique, the rare chromosome disorder charity. http://www.rarechromo.co.uk.