I had a tattoo done last week. It’s on my left foot. It’s green and swirly. It’s artistic and clever and it’s there to remind me of how proud I am of my boys. The emblem of the cerebral palsy ribbon, in the colours of ‘cerebral palsy’ green, encompassing two tiny love hearts, representing two little boys who took my own heart 6 years ago.
I’ll be frank. It stung a bit. Once she started ‘inking’ me, I remembered how the one on my right foot made my eyes water a few years ago. To be honest though, the physical pain of the tiny needles bore nothing on the emotional pain of what my new body art represents.
People will wonder why I had it done. Often tattoos mean something significant, sometimes they are just because people like the image. I often think it’s an extension of personality or a nod to signify something sentimental. This one certainly is (unlike the one which I frequently forget is on my lower back, mainly as I had it done under the drunken influence of two friends when on a girls weekend in Dublin many moons ago).
This one is there for all to see, though maybe only those in the know, or who know me, will truly appreciate the beauty and the meaning behind the art.
For cerebral palsy now has come to define many areas of my life. As much as it angers me and I have hatred for the pain it causes, it has brought me much to be grateful for. It doesn’t on it’s own define my sons, but it certainly is a huge part of who they are. Because of it, they have triumphed in bravery. Because of it they have overcome hurdles. Because of it they have taken a different path in life. Because of it they have met many people and touched many hearts. It shapes them and is part of them, yet they are much more than their condition alone.
Cerebral Palsy arrived without invitation. Like a gatecrasher at a wedding who ruined a time of celebration, it walzed into our lives shamelessly and tried to take hold. For a long time, it did.
It ruled me, and as much as it has shaped my twins’ lives, it has moulded mine too. I’m a different kind of mother now it’s here.
I’m not the parent I thought I’d be. I’m not the mother who my 7 year old self role-played when playing dolls in my pink bedroom as a little girl. I’m not the parent my friends are or the parents my own are to me.
It was only today in a telephone conversation that I was referred to as a ‘parent like you’.
What does that even mean? I thought about it after the phone call had ended. It was well intended, meaning the lady understood that things in life were difficult at times for families like my own. Just to get out and experience family time, takes a huge amount of effort. We can’t just ‘jump in the car and go’. The equipment, the stuff that’s required to be out the house more than a couple of hours, the time to plan ahead – never mind the looks and stares you get when you get there whilst just trying to enjoy a normal day out. (I still try to fathom if these looks are ones of pity or at times, genuine shock as if my disabled children resemble aliens the general public have never seen before. Don’t get me wrong, I’d stare if an alien was at the zoo next to me, but seeing as it’s not an alien, it’s just another human (albeit one who’s legs and voice don’t work well) the stares aren’t overly welcome).
I guess a transformation of a ‘parent like me’ needs to be the growth of a much thicker skin.
The phrase ‘parent like you’ took me aback. But in many ways, she’s right.
I am in a different club. One I didn’t intend joining, but one I was registered in without my permission. I’m not a ‘yummy mummy’ or one of the cool parents at the school gate. I’m not a parent who has after school clubs to stick to. I’m not a working mummy as my career left me as quickly as I was given a one way ticket to Carersville. Nor am I a stay at home mummy. My ‘working hours’ exceed that of a ‘double shift with overtime on no pay and not even a tea break’ kind of a job. My hours are taken with therapies or chasing doctors or appointments that have been changed or allocated – in many a case, when I’m already due with the other twin in a different department of a different hospital. I’m not a mummy who attends normal parents’ evenings. I go to the school office to update then with medicines and Dr’s reports, rather than to consult lost property. I’m the odd one out.
Inadvertently, where motherhood can bond you with others on a similar path, together all consulting milestones and child achievements, mine has led me to a land of loneliness. I used to have friends at a special educational preschool whose children has similar conditions to mine, but I’m only in contact with a couple now.
Interestingly, one of them is going to officiate at our vow renewal (she’s the coolest and loveliest priest around). Cerebral Palsy may have taken my expectations of parenthood, but it hasn’t claimed my marriage. It can whistle for that bit.
The other of my ‘disabled world’ chums is Helen. My soul sister, who not only shares my love of prosecco, but can see through the lines of our life challenges. We support each other across the airwaves as geographically a county keeps us apart. The ability to connect with someone and for them to understand, when you don’t even need words to deliver how absolutely crap things can be, should never be underestimated. Living a similar life, underpinned by a similar journey, sharing an unknown destination. Every ‘parent like me’ needs a Helen.
I’m extremely lucky to be surrounded by many other friends and I’ve been blessed to never be deficient of a girl tribe. So many have my back and would freely listen to my worries about things, but I’m not an overly good sharer. I’m a bit of a bottler-upper, finding it far easier to put my thoughts into writing rather than give out an emotional tsunami to my much loved crew. This probably infuriates the hell out of them, but they are my normal. Whatever normal is and once was for me has gone, yet these girls are my lifeline to things beyond my four walls or clinics or hospitals. They are the people who can tell me about their working day, their office politics or their client dramas, what they saw on social media or their child’s latest saga. Grounded by a normal life, bonded just by friendship, the ‘parent like me’ can touch into their world which only runs parallel to mine.
As I sit here and type, having just given more drugs and turned one boy over, I await for the other one to wake as he does several times per night. Sleep isn’t a familiar friend. I think fondly of my true friends and how important they are to me even though they are not a ‘parent like me’. As much as people want to understand, true understanding of the complexities of our life can never be achieved unless you live it with us behind our front door. My friends see more to me than the red lipstick and love of sparkly objects or shoes that may be superficially evident to most. Where others may see me getting on with life, my true friends see me attempting to cope with this roll of life’s dice and act as cheerleaders and lionesses should someone say something inappropriate or offensive. (Some with a loader roar than others 😉). For those who remember it, they aren’t my bodyguards they are my ‘She-rahs’.
But true understanding can never be reached, only empathetic comprehension. How can anyone ever really understand if you haven’t walked the walk? Deep understanding can only ever be reached if you sit opposite the consultant like I did, listening to the words like I did, and then being given a title of ‘parent like you’.
But the message is, that’s ok. It’s ok not to completely ‘get it’ just like it’s ok that quite often I really don’t want to talk about it. Having friends who support you is the important thing. It makes the island you are now living on feel like you have frequent visitors who really want to come and see you. Then you wave goodbye until the next time, and you are left alone with your thoughts once more. Sometimes the thoughts are sad. Sometimes they are happy. That’s life.
As much as I maybe didn’t want to be a ‘parent like you’, I am. Last week without really realising it, I stamped myself with a symbol that I really am a part of that group and actually, it’s an unexpected membership I am truly proud of.