Mum. Perhaps the loveliest person I know.
How many Mum’s have wished they had a different name for one day. No matter who our Mum is, as kids we all worship her and see her as the best person in the entire world. I know I saw my Mum as the best one in the world anyway.
Almost 13 years ago, I was given the devastating news that my Mum had a terminal degenerative genetic condition that would eventually kill her. I learned that this disease was called Huntington’s, and that there was no cure. I also found out that there was a 50% chance that my sister and I carried the faulty gene and would also develop the condition. My Mum was 47. In 24 hours my life went from being a regular teenager who moaned about not getting a lift to school when it was raining to a very grown up young woman who thought about life differently.
I actually coped fairly well for a while. We didn’t really talk about it afterwards as Mum’s condition was only beginning to show signs, so for the most part we all went about our daily life as normal as we a possibly could.
13 years down the line and it is a very different story. My Mum now needs round the clock care, which is mainly provided by my Dad, my sister, her fiance and myself, and an amazing family friend who works every week to help provide care for Mum. The hours are limited but none the less is makes a huge difference to all of our lives having her around as a more emotionally detached care giver.
I don’t want to make this post about Mum’s illness. I actually decided I wanted to write this to tell people a bit about my Mum, before Huntington’s Disease tried to rob her identity. Things have been increasingly building to a crisis point recently and I find it good for my emotional health to focus my attention on the woman behind the illness. It’s been difficult for our family to see some people leave Mum behind, as though she no longer serves a purpose in their lives. We try to not think about it too much as we understand life is hectic and people are so busy and know that feeling this way is in no way a practical solution for helping Mum. Perhaps they fear how she will be, or that they won’t recognise her? Maybe they feel it’s been too long and they couldn’t see her now because they are embarrassed? Or maybe they just don’t see how poorly she has become. Nonetheless, Mum has become increasingly isolated and is at risk of becoming ‘the woman with HD’ instead of Jenny; my amazing Mum.
Mum and Dad met is 1983 whilst she was getting out of an emotionally distressing relationship. She only agreed to a date on the premise that he could make her laugh…which he did. The only thing is he’s been telling the same jokes now for 30 years!
She was timid, soft natured and cried at the tiniest thing. Dad on the other hand had moved to the UK from Sicily not speaking any English and had pretty much ‘brawled’ his way through school using his fists to claim his place. He had a huge heart with a huge temper to match. That meant he would move heaven and earth for his woman but if another man even so much as looked at her he would have chinned him within 3 seconds for daring to even breath the same air.
They kind of worked well. Mum helped to calm Dad down and taught him to read and write properly, and Dad worked on toughening Mum up ensuring she wasn’t taken for granted by those who came into her life. His Mum (my Italian Nanna) had her reservations about Mum after Dad had been cheated on by an ‘English’ woman he was previously married to. Dad has talked about living in a flat in Coventry and Mum and Nanna both turning up at his door with meals for tea looking at him to see which one he would eat. He said it was an intense stand off so he would eat both and feel sick but tell them both it was lovely. Still find it hilarious how two little women could intimidate a black belt gym buff so much!
In 1985 they got married, and unbeknownst to anyone else, I was there too, cooking away in Mum’s tummy! I can only hope at 5 months pregnant I look like that! In the next 7 years, I was born, and my sister Emma too and we moved to Pensacola, Florida. I even caught the yellow bus to school! Mum had lost her Mum (my Nanna Bet) to HD when I was only 1 and when Dad was offered a job in Florida permanently they were too nervous to move, so after 6 months they moved back to Coventry.
In 1994 we moved to Cheltenham as Dad had moved jobs and it meant needing to relocate. We moved away from all our family and had to make a fresh start. In 1997 Mum and Dad were talking about having a third child. Previously, genetic testing was not available so families with genetic illnesses would have children just like any other. But genetic testing meant that having children came with new choices now. Mum decided to test and they both agreed that if she was positive they would not have any more children.
The rest is history.
Dad got made redundant around the time that Mum tested, and they went through a really difficult time. Amazingly, although Emma and I thought they were ‘eggy’ on a regular basis, our lives carried on as they should have, with Mum running us round to our clubs and Dad working day and night to bring enough money in to provide for the family. We were happy kids.
My favourite thing about my Mum when I look back now was her sayings! She was such an old school Ma, and would regular teach us the ways of the world with sayings such as ‘N.O spells no’, ‘I want never gets’ and my personal fave ‘Stop crying or I’ll give you something to cry about’. She was a ‘take no shit’ kind of Mum despite the fact she most likely burst into tears the second we were sent to our room. We were allowed 2 biscuits from the tin as a treat and she would NEVER break that rule so there really was no point asking. If you got the giggles at the dinner table I would be sent to sit on the stairs while my sister sat quivering at her plate desperate not to laugh. It makes her sound like a cow, but she wasn’t, she was just firm…but my lord was she fair. The school holidays were jam packed with fun stuff and without fail we got a jammy donut on a Friday after school watching ZZZAP. She put a wholesome dinner on the table every day, tucked us into bed at night and watched with full enthusiasm when Emma and I would entertain her with our many plays, songs, video sketches. She was the best. She even marched onto the local green when I was 10 years old in her slippers to tell some teenage boys off for calling my ‘tubby’. A true lioness protecting her cubs.
My Dad worked away from home a lot, travelling all over the world with his engineering. He was not so great at entertaining us. Every Friday he was home, Mum would go Line Dancing with her friends and Dad had to babysit. He loved us with all his heart but my god did he hate entertaining us. He just could not work kids out, and would do anything to keep us distracted so could chill out. As an adult I now realise he had been travelling all week and just wanted to sit down but as a kid I thought he was well boring. He would take us to Budgens and give us a fiver each to spend on sweets. YES A FIVER!!! Who gives a kid £5 to spend on sugar? Needless to say my mouth is now full of fillings! He’d plonk us in the living room with our sweets and a Disney film and ask us to call him if we needed him, he would be in his office. As you can imagine, we devoured every sweet in sight and high as a kite would proceed to jump all over the sofas, playing air guitar and pretending we were on a comedy sketch show. He would be pulling his hair out by the time Mum walked in and we would just grin at her like butter wouldn’t melt. Brilliant.
Mum and Dad said that no matter what, we would go on holiday for 2 weeks every year as a family and spend whatever they had making memories for us all to cherish. We never knew she had been told she had the gene and they wanted to protect us from that for as long as they could. We went to so many lovely places and for those two weeks, there was no bickering or work, and Dad would play with us too. Mum would remain horizontal the whole holiday. It was her time off from the kids so she would just cook to a crisp on a sun lounger engrossed in a book. Dad would try desperately to get me and Emma into karate on the beach and in the evening we would get dressed up and go out.
Once HD became a bigger part of our lives, things changed. Dad suddenly became the one cooking dinner, and it was Mum who had the temper. This was just sheer frustration at not being able to stop what was happening to her I think. She would lash out and sob so hard I couldn’t even bring myself to give her a hug because I feared breaking down myself. I remember her trying to run away one time charging for the front door. I ran and stood in her way acting like a human punch bag while she lashed out in desperation to get away from it all. My Dad watched in shock as she had just missed his eye with a glass she threw at him. Her punches were hopeless swings, nothing viscous and these outburts were few and far between but they were very real and hard to see. The once happy go lucky, gentle natured Mum we knew, was suffering at the hands of her own deteriorating brain and couldn’t understand how to manage it. Dad had to find a way to control his own emotions very quickly and step up so she could cope with what was about to come.
Nowadays, he can’t even leave her for 5 minutes, watching her every move in case she hurts herself. She chokes on every meal she eats despite it being liquefied, she can not understand simple commands when she is tired such as ‘mind the step’ and she cries daily from the confusion she is now suffering as dementia begins to rear it’s ugly head. Understanding her talk is really difficult and she needs dressing and showering daily. But underneath all of that, she is still there. She really is if you just look hard enough. She will offer you a cup of tea every time you go round even though she can not make one for you. She ALWAYS asks how you are before you ask her. If you have a hard day she gives you a cuddle and has never once moaned about what is happening to her. Not one time. She is there.
What I am trying to say is, don’t ever let an illness take someone away from you. As Robin Williams said when he played the amazing Patch Adams,
‘You treat an illness, sometimes you win, sometimes you lose. But you treat a person, and you win every time’
People who suffer with illness, are no less of a person than they were before. They are better than that. Kings and Queens of the earth, battling on in spite of everything they face. They deserve the best out of life and still enjoy the same things they did before, even if they can’t necessarily tell you that. Reach out to someone and make a difference, let them know you remember who they are and don’t ever let an illness take someone away from you. Include them like you once used to, even if it means going the extra mile. They need support and acceptance more than they did before. Their heart is still beating and they are doing the best that they can.
You are the best Mum in the world, and Dad you are awesome too. If anyone can do this, you two can.
Me and Emma love you both very much