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Symbol cane or neon sign…

Alongside all of the medical people we have to see at the hospital, Eleanor also receives support at home and nursery from visual impairment specialists, one of which is a mobility teacher who will assist her in learning to move around independently.

Eleanor has been given two white canes. One is called a ‘Long cane’ and is primarily used for mobility purposes by detecting objects in her path. The other is a ‘Symbol cane’ and is exactly what it suggests it is, a symbol. A symbol which alerts others of her visual impairment.

Due to her age the long cane isn’t entirely necessary yet as she always holds our hands when out walking, she would also not be out walking alone, yet! It is, however, important for her to get used to holding it and using it so when the time comes she will be confident enough to start the process of becoming more independent.

Eleanor cane

I have mixed feelings about the symbol cane. In a way I feel at her age it is completely unnecessary. Eleanor is always with us and she never leaves our sight. However, people now move out of her way when walking towards her. Mothers move their prams instead of almost running her over. My job guiding her around people is made so much easier when she has that cane. People move on buses and trains, they actually get up and let us sit. That would never happen without it. People are more patient when we are walking up and down steps. Instead of rushing past, they stop and wait.

Despite all of those benefits, I still want to snap the bloody thing in half. It’s like a massive neon sign shouting to the world that Eleanor is blind. People rarely need to know she cannot see. I hate the fact that people now look at her with sympathy, or even worse, look at me with sympathy. People who would normally just walk past her and ignore the little girl skipping along with her Mum and Dad. I had my reservations as soon as it was mentioned she would be getting one, but I understand why she needs it and how useful it will be to her. Unfortunately, one of the first times I took her out with it my reservations were validated.

Tim was away working in Paris for the weekend and Eleanor’s ‘Nana’ & ‘Gaga’ (my Mum & my Step Dad) had come to visit. We had been out for dinner and decided to have a little walk. Eleanor was skipping ahead hand in hand with her Gaga, holding her cane and my Mum and I were trailing behind when a lady walked past, stopped, tapped her husband on the shoulder, pointed at Eleanor and said in a loud voice “Oh, look at that poor little girl, she’s blind”

I felt the tears sting my eyes and it took every ounce of strength in my body to keep walking and not scream at her. I was devastated. It made me feel sick with anger and pain. Her words still echo in my head every single time I see that cane. I wish I could have found the words to explain to her how that comment made me feel at the time. I wonder how she would have felt if I had walked past her, pointed and said “Oh, look at that poor lady, she is fat and ugly” (because she was!)

Would that have been any more acceptable!?

I am sure she meant no harm with what she said. She was simply pointing out the obvious in her mind. I am also sure that she would have been extremely embarrassed had she known how hurtful her words were to me, that poor little girls mother.

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People now look at Eleanor, not because she is a pretty little girl with a beaming smile (yeah, yeah, I am totally biased, I know!) but because of that neon sign in her hand. I walk around with my gaze slightly down, partly because I am now Eleanor’s eyes. I have to watch out for obstacles she might need to avoid or be made aware of; broken paving slabs which she could trip on or kerbs to step up or down, but partly so I don’t have to see the faces of others as they battle with whether they should smile or pretend they haven’t noticed.

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It will certainly take some getting used to. I still can’t quite believe that any of this is actually happening full stop, but one day I know I will be able to walk with my head up, talk to people if they say something which hurts my feelings or catch the eye of the odd stranger and smile, giving them the confidence to smile back and see my daughter for the wonderfully happy and confident little girl she is, instead of ‘that poor little blind girl’.

End of induction…

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Eleanor’s chemotherapy schedule is split into two parts. The first is called ‘Induction’ which covered the first 24 weeks of her 18 month schedule. This began with 10 straight weeks of weekly chemotherapy, followed by treatments on week 13, 17, 21 and 24.

From week 25 (which begins on the 3rd July) we move into the second part which is called ‘Consolidation’ During this phase she has 3 weeks of weekly chemotherapy followed by a 3 week break and this continues for just over 12 months.

We are now at the end of the induction phase. I simply cannot believe how fast the time has gone and now we have reached this juncture, I feel like I have taken a big deep breath and started to reflect on the last 5 months of our lives.

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People say to us all of the time, “I just don’t know how you do it, I’d be a mess” and the truth is, you probably would be a mess, but you would still do it. You wouldn’t lock yourself in a room and leave your child to fight alone, I don’t believe any parent would. Yes you will find it hard, yes you will probably at times think your child is going to die, but you will still push on and you will still fight alongside them until your last breath.

There was a point right at the start when I thought I would never understand all of the medical jargon, that I would need to get a degree in nursing to even begin to make sense of any of it, but now I do understand the majority of it. I can usually reel off her last blood counts with the knowledge of what each one means and it may have been daunting at the start, but that part has become much easier with time.

Some oport doggyther things become easier with time. Instead of having to hold Eleanor down screaming when she has to have her port accessed, we now just have to talk to her, calm her and hold her arm or t-shirt out of the way so it doesn’t touch the part the nurse has just made clean and sterile. I always hold my breath until that needle is in, every single time, and I have lost count how many times that has been now. The process is getting easier, but it will never be easy to understand why she has to go through it.

You have a million people around you praising you for your strength and positivity, spurring you on, helping you over each hurdle. It’s amazing and heart warming but it also has kind of a negative effect. What if you have a day where you don’t feel strong? A day when everything is just too much and your haunting negative thoughts are overwhelming. A day where you just want to scream because it’s all so incredibly unfair. Will these people be disappointed in you? Will they lose their admiration? Will you lose their support? Because let’s be honest, it’s much easier to support someone with a smile on their face than someone crying into their coffee!

I think I am naturally quite a positive person so it comes easily  to me to be happy and positive and see the best in a bad situation. There are days when I do feel a bit hopeless though, I look at little girls riding along on their scooters or bikes with their parents trailing behind, playing in the park unaided or sitting quietly and watching Disney films and it breaks my heart that Eleanor misses out on those things. Those things that when you become a parent you just take for granted your child will eventually do. I feel jealous of people when they complain that their child has a cold. I wish Eleanor just had a cold. I wish I could give her some Calpol, a cuddle and it would all go away. But it won’t. When someone takes their child to the cinema to watch the new big film. I’m honestly dreading when the new Frozen film comes out. Eleanor loves Frozen, she was and still is a huge Frozen fan but she won’t be able to watch the new film. When all of her friends at school are talking about Elsa’s new dress it will mean nothing to her.

Thankfully these days are rare and when Eleanor smiles her beautiful brave smile or laughs her infectious laugh, all the pain just goes away, back into a little box inside my head, where I hope, one day, it will be able to stay.