It’s normally in my quiet moments, the shower, the rare bath or when it’s just the two of us and the house is filled with the reassuring sound of Jermiah-Lee’s heavy gurgled breathing that I cry.

I don’t know why, it’s like something just happens inside. I close my eyes and see the nothingness and that’s when it hits me most, J-Lee will never see my face, never see his own face for that matter. He will never understand the concept of colour, just like I’ve never understood the mind blowing fact God has always existed. It gives me a headache thinking about it.

I read an article about a man Paul Gabias who was born prematurely and became blind shortly after birth. He uses echos, the clicks of his tongue and sound from his cane (echolocation) to build a picture of objects. He can describe a table and picture it accurately but does so without seeing colour. Do you get that? He can conceptualise a table in its physical form and build a mental map of its dimensions but does so without it having any form of colour. He has never seen colour before and therefore cannot know or get what it is.

It’s so bizarre and really does hurt my head thinking about it. In fact, colour is one of the things I’ve researched and been completely baffled about when having to describe it to Jermiah-Lee If you have any suggestions about how to describe colour to a blind person that has never seen before then please do leave them in the comment box below.

This morning my son was watching a Christian children’s programme Paws and Tales. The episode was about one of the characters finding honey in a tree and trying to capitalise on it by selling what was never his to sell in the first place. I can’t remember what happened exactly but something was said which made me stop and say to myself…that’s exactly what I need…faith. To go back to the faith I once had instead of crying and stressing about the impossibilities I need to have faith and focus on the possibilities.

I decided that instead of feeling bad about what J-Lee cannot do, I’m going to focus on what he can do. The reality is our brains are so advanced and complexed that I have every confidence his brain will make up for the loss of sight and enable him to conceptualise, think, learn and reason in a way that is completely incomprehensible to you and I but works perfectly for him.

I don’t want Jermiah-Lee to go about life hearing me say things like ‘I wish you could see the sun’ or ‘I wish you could see how beautiful you are’ instead I’ll be saying things like “Jam Jam, can you feel that beautiful sunshine?” “Feel the softness of your skin and the amazing shape of your lips and nose”, can you feel and smell the ‘green’ of the grass and leaves” From this very moment forward I’ll be embracing everything I can when it comes to teaching Jermiah-Lee and I’ll be giving him the best possible experiences that I can with the acquired and ever growing knowledge that I have.

I will ensure that he doesn’t feel bad about himself or the fact he cannot see. I want to truly embrace his difference and allow him to believe that his difference is special and that he has superpowers other humans don’t have. He can see in a different way to we see and as much as he may be confused by our way of seeing, we are equally confused and wish we could understood his way of seeing.

I watched a YouTube video about a 9-year-old boy in New Zealand who was very angry about not being able to see. It really tore me to shreds, He was intelligent, very sociable and eloquent but equally very resentful about his inability to see. I don’t want J-Lee to ever feel that way. I’m so fixed on doing everything within my capability to ensure this.

Of course, reality has it that I may not be able to control this and he very well may feel just as I don’t want him to. But I’m going to do my best to make sure he doesn’t and to reassure him if he ever does.

I’m working really hard on myself too, I need to accept that I just cannot change this situation. It’s always been my worst thought, most of us have had that conversation at some point, what would you rather to be deaf or blind? Or if you had to loose a sense and hold onto one what would it be? My responses have always been that I’d rather to be deaf than blind and if I had to loose a sense, the one that I’d definitely hold onto is my sight. I suppose that’s why I struggle so much with this.

Sometimes I traverse my mind to the day he was conceived and those few weeks following conception. What could I have done differently, what went wrong, was it because of this or that? The truth is, by the time I knew I was pregnant the damage had already been done. So there is nothing I could have done any differently to change the fact that Jermiah-Lee is blind.

I often go back to the hours following his birth when I’d hold him in the Neonatal intensive care unit. I’d run my fingers across his eyelids and ask the nurses “has he opened his eyes yet?” “Why hasn’t he opened his eyes? On day 2 after birth, my fingers were running across his eyelids and the reality hit me, there was nothing beneath. Everything felt so soft and spongy, delicate and squidgy. In that moment, without any confirmation from an ophthalmologist I knew. I knew that his eyes hadn’t developed and he was born without them. But, deep down I prayed and wished my realisation was untrue.

Here we today, a brand new acceptance and reality check. I cannot do anything to change the situation. I can only do my best to learn how to make it the norm, because at the end of the day, this is J-Lee’s norm. He doesn’t know any different, cannot know any different and won’t know any different. Not until Jesus comes for the second time and changes him in the twinkling of an eye! At least then his eyes will twinkle!!😊

For now, I’m planning on learning Braille, I want to give my boy the happiest and best life possible. We have songs for nappy changes, cues for picking him up, putting him down, cues for feed time, and working on so many other ways to communicate with him. Despite me having the worst singing voice ever, he loves it! He enjoys singing, music and is always surrounded by lots of sounds and smells.

I hold his baby bath care liquid to his nose and squeeze it for him to smell before a bath, I wave the coconut oil we use on his skin in front of his nose before moisturising his body and I always have him in the kitchen when I’m cooking and I talk to him about what I’m doing, the ingredients I’m using and allow him to smell them and touch them. I believe if we expose him to these things now they’ll only become the norm for him. That’s all I want, for him to have his own experience of normality in a world that often struggles to deal and cope with difference.

I’m literally putting on my bad-mum T-shirt, walking with my head held high with the fighting spirit to give my precious, gorgeous and amazing boy the very best.

I have to also point out that I’m not doing this alone, I have the support of my husband, children, parents, siblings, friends, Jermiah-Lee’s spiritual guardian, Godparents, aunties, uncles, social media friends and associates, you, his medical team and so many others. I really feel encouraged by everyone that comments, encourages and supports us in this journey.

Let’s do this J-Lee.

I also want to say thank you, you reading this is massive, it’s support and I hope you can share it and join in our journey to raise awareness for Trisomy 13 and Bilateral Anophthalmia. 😊

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  • Stacy says:

    So inspired by your words Serena. Hearing about the world you create for Jeremiah-Lee is absolutely awesome. Thank you so much for sharing. Your courage is encouragement to us all.xx

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