DEAR ALEXA...
Blogger Natalie Lee, aka Style Me Sunday, pens a letter to her daughter Alexa, eight, who is losing her sight
Iremember the day you made me a mother like it was yesterday. I had wanted you for many years, but your dad wisely decided that we were too young. I was able to travel and forge a career in midwifery before you were born. Your dad, ever the sensible one, focused on establishing a successful career in the city. Eventually, we had you when we were both 29. It was the happiest, scariest day. Little did we know how much you would change our lives – for the better – but also how many challenges we would face together.
The day your lack of sight hit me like a ton of bricks will stay with me for ever. You were three, and so bright, cute and inquisitive. You had the squidgyist cheeks.
We left the routine opticians appointment with your new pair of glasses, which were unusually strong for a child your age. Then you said, ‘Wow,
Mum, look at those houses!’ We’d walked down this street so many times, and I never even knew that you couldn’t see the houses before. I burst into tears.
I knew there was something wrong.
After so many unanswered questions and anxious nights spent searching Google, two years ago you were eventually diagnosed with Brittle Cornea Syndrome.
And since then, we’ve lived in a constant state of anxiety – when will we receive that phone call from school? When will you wake up without any vision at all? We still don’t know when that day will come, only that it probably will.
Every day, I know that there are some things you might be seeing for the last time. I remember us walking through Victoria Park and you looked up at the double rainbow. I was surprised and glad that you could see it at all, but I also knew you might not see another.
I can’t lie, Lex, we’ve been through tough times – there have been more operations and tears than I can count.
Your dad and I try to tell you how brave you are whenever we can. I’ve even nicknamed you My Little Soldier.
The other day, you said to me, ‘I know I’m strong, Mum, but sometimes I just don’t feel like being strong.’ Of course, I told you that was completely understandable, that you don’t have to be strong all the time.
Because there are times when I don’t feel strong either, like when I crawl into bed with you late at night while you’re sleeping. It’s in those quiet moments, when
I stroke your hair, that I feel so sad about how many struggles you might one day face. That’s when it really hits me, and I wish and hope for life to be kind to you.
When you were first losing your sight, I used to want to make sure that you always remembered what I looked like – my face, my eyes, my smile. But I’ve come to see how unimportant that is. What matters now, is how are you going to get around in the world? How will you cope when I’m not around?
How can I arm you with the tools to live the happiest life you possibly can? I know that only one in 10 people who are diagnosed with blindness as a child end up working. These are the things that play on my mind, not trying to make you remember what colour my eyes are.
Most of all, I never want you to forget that it’s okay to let out your feelings. I tell you all the time that feelings of sadness, frustration and anger are completely normal. Anyone in your situation who was struggling to see things like other people around them would be feeling like that, too.
Both your dad and I have developed many wrinkles and grey hairs from the sleepless nights and the constant worry. I even started to lose my hair. But we would do all of this 1,000 times over for you. We would do anything to take away your pain and suffering. And like the film
Wonder says, ‘Some people were meant to blend in and some people (like you) were meant to stand out.’ You have always unwittingly guided us and have helped us to become better parents – we have worked hard to show you we are just as brave as you, that you can always count on us when you need us. We are focusing our efforts on fundraising for the RSBC, which has supported us, and fulfilling your bucket list. Meeting Little Mix, seeing dolphins in the wild and parachuting are just a few we have yet to achieve. I would love for you to see the Northern Lights before your eyesight goes completely, to see the amazement on your face would be difficult, because it will serve as a painful reminder of the limited time we have left, but we will treasure those memories for ever.
We will never stop fighting for you to get the assistance you deserve, and we are always researching the latest treatments as well as supporting and loving you and your little sister.
And the one thing I want you to remember, above everything else, is how courageous you have been through this journey. Every day, I’m struck by your bravery, especially for such a little girl. I know that whatever life throws your way, you will face it with gumption and an open heart. And we will always be here, cheering you on, holding your hand, looking on proudly at the way you continue to live and to love life.
All our love, Mum and Dad x