Growing up I had one fear: what if I went blind?
It was always a hypothetical fear that I guess stemmed from a ‘would you rather’ game with the two answers being go deaf, or go blind.
I vividly remember walking down the road on the way home from school after the sadistic version of this game with my eyes closed, imagining just how difficult it would be to have no sight. I must have managed around five steps before I opened them again, full of fear.
I tell you this as, in a weird way, I’m kind of living my first fear. Only it’s through my beautiful baby daughter, Piper.
Piper is 18 months and she is legally blind. She has a rare condition called septo optic dysplasia, or SOD. Without getting too technical, it’s made up of three things: midline brain abnormalities, hormonal dysfunctions and optic nerve hypoplasia, which affects her vision.
That’s the basics of her condition but really, I wanted to talk about coming to terms with her diagnosis. Piper seemed so healthy, I would have never believed you if you had told me when we first met her she would have spent so much time in hospitals, on ambulance rides, having countless blood tests, sedations, PICClines and brain MRIs.
It’s strange now to think that for a few weeks at the beginning of her life she was just a normal baby, how we had no worries, and just how quickly that got ripped away from us and how dramatically our lives changed.
I’ve noticed over the last year how we have adjusted to, and accepted, her condition. I used to take so many pictures to try to get just one good one of her looking towards the camera with both eyes straight. I didn’t post videos where her eyes were madly shaking – they got deleted and I would take a new video and I used to obsess over how quickly other babies were hitting their milestones.
But now, we love her turned-in eyes, they are such an important part in all of our lives. Her dancing eyes (aka ‘nystagmus’) is becoming less and less frequent, but when they do really shake we get excited – it’s usually when she’s trying to focus on something. Her smile, that I doubt was learned and instead inherited – we don’t care where it came from, it makes us smile right back either way.
Piper’s milestones mean so much more to us than they would have if she was a ‘normal’ baby - she’s only just started crawling, she’s not standing or talking much, she’s a terrible eater and she doesn’t sleep, but we know one day she will do all of these things, and we are only so excited for when that day comes.
Most importantly, Piper has taught us to have hope and be optimistic. As far as we knew our baby was totally blind, but while her vision is beyond poor and she’s registered blind, we know for sure she’s not in total darkness.
There are also obviously some negatives too. I live in fear every single day that she is going to get ill. The slightest change in her mood, or if she sleeps too much or makes a weird noise, or even if she’s off food more than usual, I’m in a panic. I don’t just look over at her while she sleeps, I literally study her, although she has a breathing monitor under her mattress for the rare time when we both actually get to sleep.
I have noticed more and more lately that I dread strangers talking to us. I always get the same comments of “she looks tired”, “has she just woke up” or “look at her looking around everywhere”. I just never know whether to go along with she’s tired, tell them she’s visually impaired or just laugh nervously. Usually, it’s the latter. A couple of times I’ve walked away after and just cried my eyes out. There’s only so many times you can put on a brave face.
Once upon a time I could tell myself that my family were all healthy and that bad things couldn’t happen to us, but Piper’s diagnosis showed me hard things can happen, often to the least deserving of people.
It has been a difficult year to say the least, but a very rewarding one. But despite the negatives, we have learnt how to make the best out of our situation, and we are learning how to turn it into a positive. We have the biggest support group around her, from the dozens of medical professionals who look after her to Helen, her visual impairment teacher, our friends, family and even the strangers who have shown so much kindness and generosity.
Piper has exceeded all of our expectations since her initial diagnosis, and we can only hope that over the next year she continues to develop at the rate she has so far.
Piper shows none of the fear I did that day when I walked with my eyes closed, because through her eyes, that is normal.
Funnily, I read a quote six years ago that I now love so much: “Why do we close our eyes when we pray, cry, kiss or dream? Because the most beautiful things in life are not seen, but felt by the heart”.