Here is an open, honest, and beautiful letter, written by one mum to her daughter.

To my darling girl,

I want you to know that to me you will always be a superstar. You are such a wonderful, clever, kind-hearted young person, but life for anyone growing up is really hard going. You have reached an age where the pressure to be normal and fit in has really kicked in. All the security from your primary school, where you navigated confidently and you felt accepted, has gone. I see you struggle everyday though you are trying hard to please as usual and convince the world you are okay. The teachers think you are awesome but, as you admitted to me this evening, none of it is easy right now. I don’t know how to take the pain away, to help you accept yourself as you are. It’s so hard hearing you say that you are sick of being you – that you don’t want to use your cane, that you wish you could hear what your friends are saying and not need support. Part of me wishes it too, but most of all I want you to know you are brilliant – just as you are.

What is really hard is being in a world where your peers learn so differently from you. You have to work twice as hard to access the same information as they do. I know you can feel like no one understands. I try to listen but I realise I make you cross too. Sometimes you are in your own world of pain and anger and I am in mine, not knowing how to help and wishing I could do more to make things right.

Having you has introduced me to a world I’d not had to consider before. I have learnt how to describe things so you get the whole picture and don’t miss out. We interpret the world through our senses and sight seems so important in terms of social cues, body language and facial expressions. Despite your insistence that you see perfectly well, of course you miss things and miss out on the life your friends have. I can see it’s beginning to really get under your skin. Mine too.

As you have got older the realisation that you are not seen as equal by others is emerging. You rely on your friends to come and find you at lunch and break times. When they don’t, it is really hurtful. They are busy establishing themselves at the new school as well and I know you feel left behind. You have never been asked to a sleepover and that is hard as the rest of the friends in your group have been doing it for a number of years. Now you’re ready, you are trying to be more independent, but it’s too hard to have that conversation with them. I can’t phone their Mums and ask them, even though I want to with every part of my being. You are sad and cross and coping by rejecting anything that represents your hearing and vision loss and it breaks my heart.

I am so proud to be your Mum. I’m hopeful that you will find your way in your new school with your head held high, cane in hand, swiping the unthinking teenagers who walk in the middle of the corridor. The fact is every time information is shared amongst the school population but not translated into braille for you, it undermines your confidence. Every time you try and take part in a game in P.E and the other children don’t pass the ball to you, another wall goes up inside. You are competent, skilled, bright and have a huge amount to contribute. But you are always on the back foot trying to prove yourself and it feels unfair.

Shall I let you into a secret? I am constantly on edge worrying about the decisions we have made for you. It is so hard not knowing if you are going to sink or swim in this mainstream world. I have an anxious, tight knot in my throat and stomach wondering if there is anything else I should be doing? Should I be encouraging you to use your new Braillenote touch more? It will help you access your lessons and do your homework but you come home from school so exhausted and just want to switch off. Should I be trying to do more events and activities with your visually impaired peers so you don’t feel so isolated and ‘the weird one’? We do what we can as well as trying to be a ‘normal’ family. Should I try and get you more support for your mental health? The waiting list is horrendous and you don’t fit into the model National Deaf CAMHS works with because of your dual sensory loss. I know some days I feel like a ball of rage because it is so difficult to get you the support you need. Some days I struggle to get out of bed because the fight and the pain has worn me down and I just feel really sad. Not about you, never about you, but about the system that is filled with problems and barriers that we have to tear down so you can have an education and a social life.

Friends who understand the situation and walk in our shoes are fantastic allies and opening up about it really helps me. When I was a teenager my need to be accepted, to be the same as my peers, nearly destroyed me. I felt worthless and sick of myself because I couldn’t do the same things as my friends and I tried to disappear. I don’t want you disappearing on me my love so can we make a deal? Let’s keep talking about what makes things hard when we need to and I will help you expand your network of people who get it. Let’s also remember the moments of brilliance you have every single day and celebrate those with anyone who cares to listen. I’m right here championing you but I promise to step away as soon as you glare at me. I will not let my anxiety consume me. I will trust that you will find your voice and will hear your sadness and anger without trying to rescue you, because I can’t.  I will practice breathing deeply, notice the good things everyday and appreciate your hugs.

We can do this, one day at a time, by seeking help when we need to and knowing we are not alone. No one should suffer in silence. Write, sing, whisper but let out the awful feelings because I will always listen.

Love,

Mum x

Links

Read our other blogs for Children’s Mental Health Week in our Stories Section.

Find support for your family in our Support Resources.

Join the conversation with other parents on the VICTA Parent Network Facebook Group.

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