Hello. I can see you. I can see you sat there…and I remember. I remember the smell of the room, the time, the date, the people. I remember the box of tissues they keep nudging in your direction. I remember the little window you keep staring through right now, positioned perfectly above the consultant’s head so you don’t need to meet the eye of the ‘news givers’, those who are giving you the medical news and determining your children’s fates. I can see you.
I can see you struggling. I can see you trying to process the words and the news that makes your heart hurt. I can see and feel your fear.
Because I am you. I am you, 5 years on. I am the same person, only I am 5 years down the line. I am you. I can see you panicking, I can see you breaking. I can see the raw emotion you are feeling – drowning in total grief and shock. I can see in your tears the complete and heart shattering sadness you are feeling. I can see you willing the Drs to just stop talking, or to tell you they made a mistake and actually there was nothing wrong after all. I can see you staring into the little incubators, side by side, terrified of the future and what it holds. I can feel your overwhelming urge to run away. I am you – 5 years on. I only wish I could have 20 minutes with you now and tell you a few things. Tell you how it’s going to be. To tell you a few things where I could reassure you and help you, to start to put the pieces of that broken heart back together.
What shall I tell you? Where shall I start?
Well, newly diagnosed self, I’m surviving. I know at the moment it feels like you can’t go on but you do, as I am here talking to you now. I would love to pass you a glass of Sauvignon and tell you it’s been an easy ride, but I can’t do that. In fact, I have to be honest and say its been one of the most turbulent and extreme rollercoasters I have ever ridden. Life has thrown you the biggest most violent of curveballs, but you need to whack it back – and from today on you will learn to be one of the most greatest of batswomen.
You are about to grow (even though you are the original girliest of girls) the biggest pair of balls. Over the coming months and years you will find strength from your soul and more grit than you can muster. You will become the most protective of lionesses and will even get on your own nerves how determined and obstructive you can be when your babies need you to fight their corner the most. I know – you can’t believe it can you?! Currently I am fully aware that even remembering to brush your own teeth is a task and putting a simple sentence together is a challenge. Sucks doesn’t it. Hurts, I know. But read on, newly diagnosed self.
You are gonna cry, a lot. (Let’s face it, you had a bit of a reputation for this anyway). It’s ok to be sad. Your whole life has just changed in one conversation to something you never ever thought or expected. Hardly gonna get the bunting out for that are you? Your priorities are changing, your needs are different and from today forth you are going to follow a whole new different path in life. You know that job that you love? The midwife you are? The one you trained so very hard at Uni to qualify as? Yeah…that’s not gonna be happening any more. Your identity from working mummy to something completely different is in motion now. You won’t earn your own money, but you will be working 24/7 with no breaks, doing day and night duties 365 days a year. From today forth your identity will be ‘carer’. No, it’s not glamorous and yes you will have to swap your Radley handbag for a rather large Prim…’Primarni’ one where emergency medicines, syringes and various consultants phone numbers take residence. You will be ‘lost’ and you won’t recognise yourself for a while….but you will find yourself again along the way.
You won’t recognise yourself because this new way of life takes some getting used to. I get it that you are scared. I get it that you want to hide away. I remember, I did that. But 5 years on, I can hand on heart say that you will need the people closest to you. I can see you rejecting their calls, I can see you not answering the door. The conversations are easier to avoid aren’t they… But don’t keep people at a distance. They want to help, and I can tell you that you have the most valuable of gems in friends and family who will do just that. They won’t give up on you and will even beat the door down to get to you (yes, this will actually happen). Let them in. I know they don’t get it, I know they can’t understand. But why would they? How can they? You will be able to suss out those who are giving it a bloody good go though. They haven’t been through it. And when you think about it, newly diagnosed self, before today you didn’t have a clue either. You weren’t a parent of a disabled child before today, so your apprenticeship (and expertise) starts from this moment. From scratch.
There’s always the exceptions though….be prepared for people to stop talking to you. To be awkward around you. The phrase ‘well my problems are nothing compared to yours’ or ‘I didn’t want to bother you with what you have on your plate’ will drive you INSANE. You want to be the same person you were before , you want people to be normal around you, for friends to ask for your advice and help – just like before. Yes, there are days when you will want to shove other people’s dilemmas like which Coffee Machine to buy where the sun doesn’t shine, but actually those conversations can be extremely grounding. Anything for a while that doesn’t involve medical jargon. People will say daft stuff. Mostly, it’s because they don’t know what to say. Stuff like ‘Life only gives you what it thinks you can cope with’ and ‘Stay strong’ need to be whacked into the stratosphere as you don’t want to cope with it. You don’t want this for your son and it SUCKS. You will never ever think this is ok. You will never ever accept it. More often than not though, people will help you and you will find over the next few years that love for you and your family exudes from the most obvious and the least obvious of places. You ARE going to be let down by people you don’t expect, but there are going to be the most amazing people to step into their shoes and walk this walk with you. You are going to learn very quickly that supportive and fabulous people are the key to living your new life. They will help you get through the bad days and celebrate the good days. (By the way, it’s ok to have the bad days – they are going to make the good ones even more special).
Complete strangers too will come up trumps. A knowing smile, a kind word, an act of a selfless gesture will warm your heart more than you ever knew possible. Yet, you’ll soon learn to tell the difference between people who generally mean well, to those who didn’t quite meet the criteria for evolution. Sticks and stones…..this will become common place in your mind….you really must not worry about other people. You will meet stupidity and ignorance in your new life but seriously, for every one of those times, you life is going to be enriched and fulfilled by others’ humanity and kindness.
Never be afraid to ask for help, newly diagnosed self. Times are about to get tricky. You will need emotional help and you will need practical help. You can’t be a one man band. You are not She-Rah. (Showing our ages here, aren’t we. ;o) ) Things that once took you a moment will now need planning like a military operation. The days of ‘popping out for a pint of milk’ have gone. Wherever you and the small person go, equipment follows. Loads of it. It’s bulky, and sometimes ugly, though you will learn the art of ‘pimp my equipment’ quite quickly. Every time he gets a new piece of equipment you will cry your eyes out, as its symbolic of what should have been, what is not possible and how much that hurts. But over time, equipment will become your friend as you realise it makes your life that little bit easier. You will even get to choose the colours of some of it. (Btw you will always have to choose blue. Don’t be going to thinking you could alter it to red. He likes BLUE. Not red, green or orange. BLUE. He will remind you of this most days and the sooner you learn this the better).
It’s funny the things you have to learn to accept isn’t it. When I was young, I had to accept that I probably wasn’t going to marry Jason Donovan. Before today, I had to learn to accept that my midwife’s salary wasn’t likely going to stretch to those Jimmy Choo shoes (I’m still hoping the shoe fairy may visit one day – and YES she does exist). Now, newly diagnosed self, you are expected to accept that you have disabled children. Your hopes and your dreams that once were have gone. You are now having to formulate some new ones. I would suggest that ‘accepting’ the situation will never happen. How can you be expected to accept your child will face a life with struggles and difficulties? But I would suggest that you will learn to live with it. That ‘raw’ ‘pit of your stomach’ feeling you have now….that will fade. Understand that from the minute he left your body, you were all destined for a very different life to the one you had imagined. You will have set backs, tiny things will set you off every now and again, but essentially you will learn to live with this. The struggles will change, as he gets older the different chapters of his life will bring new challenges. None of them are easy, yet essentially though, newly diagnosed self, the pain you are in right now will never be as intense again. It just changes. Your world has stopped, but soon it will start spinning again.
What you need to remember though, newly diagnosed self, is that at this moment you are hurting. Hurting so badly you might just pass out. But that little person there, looking so fragile and vulnerable is a lot stronger than you think. He has a personality, he has opinions (BLUE, always remember blue). At this moment in time he is fighting the biggest fight of his life and I can tell you he is a lot stronger than you. He will go on, I promise you, to astound you. He will defy opinion and doubt. Overtime, your doubt instilled in you by medical professionals will fade. Your son will be your guide on this journey. He will teach you more than any therapist or Dr you meet (and be prepared to meet MANY). He is the expert. Never ever underestimate him. He will make it an unconscious mission to make a joke of those doubters. Every milestone he reaches or new thing he achieves will make your heart soar with pride you could only have dreamt of. Don’t spend your days wishing for the next milestone and chapter though. Enjoy each day and take it one day at a time. Time will happen, whether you like it or not.
I often think, if I had a magic wand, would I wave it? Would I wave it and make all his troubles go away? In a word, yes. Course I would. If I could take his challenges and have them for myself I would. I wish to my very core things had been different. That yearning for ‘how it should have been’ will never go. From now, to the moment he goes to school, to my death bed, I will always grieve for the life that he should have had. The times when you go to baby groups and all the other babies are sitting up but yours can’t, when you can’t do the food shopping as your baby cannot sit up in a trolley, when your friend’s toddlers have more developmental skills than your 5 year old, when you can’t fit the wheelchair through the door of a café so you can’t go in for coffee so you go home instead, leaving the rest of your friends there, when you organise a day out based around the locality of a local accessible hospital, when a person calls your son a ridiculous name, when you are filling in the 45th form to prove your child’s needs and how you really need that help, when you can’t really plan ahead as you don’t know if you will be in hospital having another round of surgery. You will have pangs of jealousy for every one who has a child without difficulties. You will have unspoken attachment and understanding for those who do.
But life will tick along. Things will be rough and they will be smooth. Soon as you can say things are sort of stable and you are ‘ok’, those hurting feelings will come back to bite you on the arse and you’ll have trouble sitting down again for a while. But go with it – let the emotion take you where it needs to and deal with it as best you can. Have a good cry, dust yourself off and carry on.
I don’t want him to have any of the hardships. But that does not detract from the fact I love him for who he is. He makes my heart sing. He (and his brothers) are the best thing I have ever achieved and in him I have created a different kind of perfect. Not one that society deems as perfect, but in my life, the most important by which to personally judge, he is perfection.
I do feel quite aggrieved sometimes about the early days, the days you are experiencing now, newly diagnosed self. This is why I must tell you these things. I do feel quite sad that no one ever told me that yes there is a long road ahead, but amongst the difficulties and heartache he will bring you so much joy. He does. He makes me laugh so much, he has such character, he makes me smile every day and he costs me a fortune in chocolate buttons and Charlie and Lola merchandise. As much as it may be difficult to believe right now newly diagnosed self, he fulfils my life so much – just like any other child does for their mummy. As he is a child first – disability comes second.
Please be reassured that you will reach a point when you can say ‘I’m ok’. I know this doesn’t seem possible right now. Life is not fluffy pink clouds, unicorns and rainbows. It can be hard, it will be difficult and at times it will drive you crazy. But you are going to need to be brave. You must get up every day, get dressed, wear fabulous shoes, put your face on and avoid watching Jeremy Kyle. You are going to need to grab it by the horns as life is truly what you will make it. You are going to be busy, tired, emotional and sensitive. You will unavoidably worry over things you cannot change but never ever let medical knowledge impede on your time with him. Sit tight and buckle up. Be prepared for your heart to plummet in one moment only for it to soar the next. Life is a very precious thing and for some unknown reason this is the one you need to cope with. Life is precious in itself for the very reason that one day it ends. Give that tiny boy of yours the best one he can have. Love him ’til it hurts, even more than the hurt you are feeling now, because what is the most excruciating and painful things right now is going to become the most beautiful thing you have.
I can promise you that 5 years from now, as you are sat where I am (cooking the dinner and being overdosed with Charlie and Lola – again) you will be so incredibly proud of him. And you have tried your absolute best. He loves you so very much, but no where near as much as you love him. That would never be possible.
You can do this. He will become your strength, and you will both be just fine. I promise you.