|Home made Mother's Day Card with glittery stickers butterflies, hearts and stars|
One thing I know about the many Mums I know who are parent carers are how courageous we have to be. We have to be brave, strong and determined every single day while we come to terms with the different life our beloved child or children are going to have. We have to listen to incredibly difficult news and decide to let experts into our lives who advise us how to parent our children. We have to be brave and let our children go to adults who support them and help them in a way we just can't because we are too close. We have to negotiate, listen, and trust the higher powers who decide what support our children should have. We have to speak out again and again when we feel we are being dismissed because though we are expert on our children we do not have the same power and status as the professionals who assess them.
I have found strength I never knew I had over the nearly ten years I have been lucky enough to be Chloe's Mum. But I have also felt very afraid- afraid I'm not strong enough to keep going, that in the end she will be lost in a system without the resources to support her because my voice and advocacy is not enough.
Recently I found again the piece of writing I did when Chloe was about to start school. It is good to remember how far we have come. I have many anxious times ahead while we move towards secondary school and try and ensure her Education Health and Care Plan meets her needs but this letter has helped to remind me to hold on and just keep going.
To all those Mums out there walking this scary journey remember to breathe and know you have got this- really you have. This letter might make you cry because this life is emotional but hopefully it will help you remember to trust in yourself and the brilliant job you do for your children.
Our New House
Today, Friday 13th June 2008, is a momentous day for you. Today you are going to give birth to your first child. Do know what, you will astonish everyone. The labour will be quick and painful but you will manage without pain relief, not even Paracetamol. The real gut wrenching agony comes later. She is so beautiful, your baby girl. You have wanted to become a Mum for ages and it feels incredible. You don’t sleep the first night because you can’t stop staring at her. Please make sure you enjoy this precious time, the first few weeks in your happy bubble with Neil and Chloe. This is the time with your family that you will never get back.
I am writing this letter to help you prepare for what is to come. Things are going to get a little hairy for a while. I can’t sugar coat it or change history because then you, (I) would be without Chloe. I am afraid you only have fifteen tired and blissful days together as a normal family before the first official hospital appointment. The one that diagnoses that your baby is profoundly deaf. She can’t hear anything apart from perhaps the sound of a really noisy lorry or a Samba Band. This is hard news to receive and fully understand but you will and do bear it. The days that follow are hazy, full of shock and sadness. Your home will begin to fill with professionals trying to help. Your Mum calls them life rafts. There will be good days and bad. You will cry a vast amount of tears and ask the great unknown, WHY? You hold on with your fingertips and slowly let go as you come to terms with what this could mean for your baby’s future. She is not even two months old yet. Everybody else’s baby is fine, your baby is deaf. It will be alright. ..... and then it is not.
Don’t blame yourself for not noticing, or hate your GP for pointing out that there might be an issue with her eyes. Chloe doesn’t fix or follow anything. She responds to you but never looks, not properly. You will become frantic while you wait for the appointment at the eye clinic. You will ask everyone who is in the same room as you and your baby, “is she looking at that, do you think she is seeing it.” She really isn’t and that is your eternal sadness.
When you get to the horror of the eye clinic with your husband at your side please look after yourself. It is the place of nightmares, particularly the first time. You wait for hours while your precious baby (still only three months old) shows just how much she can’t see. You will her to turn her head towards the light or react to pictures placed in front of her. There is no response. Later you will enter the Registrar’s room who quietly tells you your daughter has very poor vision. Those words place a bomb firmly in your life. Your baby has to be able to see as she can’t hear. It’s too much for your brain to comprehend. Six weeks later you will be back in your most hated place and the Consultant will register Chloe Blind. That day you will sob in your mother’s arms before phoning Sense.
The first year is really tough. You have to come to terms with your own terror of hospitals and doctors for the sake of your child. You do really well Jane, you put Chloe first all the time. Endless tests and investigations need to be carried out and you will meet many professionals who are interested in your beloved little girl. You get to know three different departments in the local hospital for her eye sight and hearing loss and there are four National hospitals you also visit. The memory of those distressing appointments and all the invasive tests on your baby does fade, like the memory of childbirth, but you can never forget.
No one has any answers, particularly the geneticists. In time on the surface you will stop wanting to know why this has happened to your child but it never really goes away. No one has seen a child like Chloe before; she doesn’t have a syndrome or a known condition. You have an amazing human, sympathetic, Paediatrician whose own daughter was born deaf. She coordinates the investigations and tries to help you make sense of something no one understands. The top Geneticist can only say that there is a high chance (one in two or one in four) that it will happen again. Your unique combination of genes with Neil’s creates your baby’s hearing and vision loss. It still breaks your heart but you will learn to deal with it. Chloe is so totally amazing that you stop thinking about what she can’t do and hold on to all the positives. She brings light and love into the world and that is a result of your combined genes too. Someone told you recently that everyone needs a Chloe in their life. You made her Jane and she certainly is determined, just like her Mum and Dad.
I have so much good news to tell you. The next few years are full of colour and vibrancy as your baby grows and responds to her world. She is so curious, touching and tasting, feeling and cuddling in her own inimitable way. She is happy from the start, your sunshine girl. She has an infectious spirit and enthusiasm for all that life has to offer despite her dual sensory loss. You will know this as you watch her lie on her back, gurgle with delight and flap her arms in excitement. This is a distinctive trait she hasn’t grown out of. Enjoy this precious time with her. I would advise you to capture the many delightful moments and keep them safely in your heart. They will help with the hard times.
The most wonderful, joyous news that I have to tell you is that Chloe is given hearing. All your fears of her growing up in a silent world disappear once you go ahead with Bilateral Cochlear Implants. It isn’t an easy decision because there are no guarantees and she seems to respond to sound with her hearing aids on. She also seems so young and fragile when they want to operate, only just past her first birthday. As a family you have already been through so much and you will feel pulled in all directions. Further testing of Chloe’s hearing will show however that she will never hear speech or be able to speak herself without implants. That makes the decision more straight forward, you want to give Chloe the best possible chance of verbal communication, particularly as she can’t see enough to understand and interpret British Sign Language. The night before surgery you are awake next to Chloe in the hospital room listening to the sounds of all the distressed babies. You feel very alone and terrified but I want you to know it will be worth it. It is the best decision you and Neil ever made. Please trust yourself more Jane, you are a good Mum and you and Neil make the right choices for Chloe.
I can’t wait for you to meet her as she is now, all the fighting, all the times you have to face the unknown head on are worth it. Be prepared to put on a suit of armour because you will need it as you go into battle for your child. The idea that a congenitally Deaf Blind child will learn to read and write, speak and understand English is unheard of but Chloe will, you know it in your bones. Braille will be her way of reading and writing and she is already doing pre Braille skills. Her spoken language is something else thanks to the Cochlear Implants. From the moment she is switched on she responds to sound really quickly and everyone is taken aback at how soon she makes sense of what she hears. Six months after she is given access to sound you will hear her first words and they are just for you, your reward for staying strong. You are changing her one day after Christmas and she is gurgling up at you, smiling at your face when she says, “Mama”. From that day onward her vocabulary grows and grows. She has now caught up with her peer group and comes out with the most extraordinary words and phrases.
I want you to trust in yourself Jane because as tough and bleak as things will seem at times over the next three and a half years you never give up. Keep fighting Chloe’s corner because in the end you will be heard. I am afraid you will need to explain many times the difficulty of having a child born with a hearing and vision loss and how overwhelming it can be. As wonderful as your input from professionals is they don’t always have the answers. The Teachers and Support Workers from the Visually Impaired Service are not used to working closely with the Teachers and Support Workers from the Hearing Impaired Service. People have high expectations of your little girl but have not had to put a package together before for a bright Deaf Blind infant who is expected to go into mainstream education. You will be expected to retain and implement a lot of information, targets and suggestions and find a way through that makes sense for you and your family. Everyone constantly has to reinvent the wheel for Chloe and you are the one banging on the drum, reminding them it has to work differently for her.
This year your child will turn four and she certainly is a credit to you and Neil and all the input she has received since she was tiny. Chloe has had a specialist team of one to one support workers since she was eighteen months old and they have helped to open the world up for her. It is good to remember you are not alone in this journey with your beautiful girl. You will find strong, meaningful friendships with other Mothers and families whose children are born different; they understand the path you are on.
I am so proud of our precious child and marvel every day at how she manages with her extremely limited vision and Cochlear Implants. Her delight at the world is contagious and she has formed some good friends at Nursery and Preschool. This is reassuring; one of your biggest concerns is that she won’t be accepted. Chloe is a gorgeous little girl, sweet and sociable, cheeky, funny and very loving. She experiences things differently from her friends but that doesn’t stop her joining in. She was even the lead in the Christmas show last month. It was heart warming and emotional watching Chloe as ‘Whoops a Daisy Angel’. She managed to listen, follow direction, move confidently around the stage and even improvise. On her first performance she drew back the curtain and said, “Here I am.” It was the perfect gift to receive just before Christmas.
Jane, there is so much I could share to try and lighten the load but you are just going to have to experience the roller coaster ride for yourself. My advice is to take every day as it comes. The joy, love and utter happiness Chloe brings you are worth every stab in the gut, every sleepless night, every bit of fear and uncertainty. I still look at our daughter with the same awe as when I first held her in my arms as you will do today. Though she has been born with no hearing and very limited sight I am convinced Chloe can rule the world- we just have to give her the right support and opportunities.
Have courage, you are far stronger than you think.
This comes with my care and protection,