He Loved the Headlights

Sometimes stories come to me from the strangest of places – the back of my retinal screening van, for one!

He loved the headlights

How unassuming the moment of Sudden Story. It began with frustration, because the lady had driven to her appointment and so wouldn’t be able to have the drops which would dilate her pupils, so in between each photograph of her retinas, we waited (and waited, and waited) whilst her irises gradually got over the shock of the incredible flashbulb needed to obtain clear images for assessment.

With her head firmly in the chin-rest so I could monitor her, and in the midst of idle conversation, she suddenly announced that she’d had terrible trouble with the drops when her son was a baby and had needed them. He had been born with cataracts, and was operated on at 6 months old.

I responded that I’d heard babies could be born with cataracts, and invited her to share more about it (her pupils were staying stubbornly tiny).

They hadn’t known, you see, that he was born almost blind. They’d felt there was something a little unusual about him – the way he didn’t smile at people or seem to seek out their faces, or the way he responded sort of oddly. But there was nothing they could put their finger on.

She was a good mother, and when she noticed that he LOVED the headlights of passing cars, she would wait until nighttime and bundle him up in his pushchair to go and do her shopping, watching as he kicked and giggled with delight at what she now realised was one of the few visual experiences of his young life.

He got an eye infection and was taken to the doctor. Routine, she thought. Nothing to be too worried about, she thought.

The doctor referred him to the eye unit of the local hospital, with an urgent appointment for the very next day, because her baby boy could see almost nothing. The doctor didn’t know whether the defect was with the eyes or with the brain, but he knew it needed to be dealt with QUICKLY, because enough of the child’s most formative time would already have been impacted by his lack of vision.

She took her tiny son home, and spent an agonising night wondering what on earth would happen the next day, and what could be wrong with her baby, and whether she would suddenly find herself trying to raise to adulthood a boy who couldn’t see.

At 8.00am the next day, they arrived at the eye unit for investigation.

Cataracts – he had cataracts (thank God it wasn’t his brain!) and would need surgery.

Twice, the tiny boy went under the knife to have his opaque lenses removed. His mother comforted and cared for him as best she could, and he came away from the hospital with teeny-tiny, MASSIVELY thick glasses, with sturdy elastic straps to hold them onto his tiny face. She was just thrilled to pieces that he could SEE.

Once his eyes had healed, as was the norm, it was decided to give him long-wear contact lenses – soft ones, which wouldn’t need changing often.

She recounted how it would take three nurses to put them in; one to lay across his arms, one to hold his thrashing head, and one to hold his scrunched-shut eye open as he bawled and screamed in fear, and administer the lens.

She told us how there ensued years of this torture, and of the struggle of him having constant eye infections (because yeah, babies do things like rub their eyes when their hands have food or mud or paint or whatever on them) and treatments. She told us with a laugh about the check-ups and the awful, stinging drops, and how he would see the dropper and cry and close his eyes, and how she would trick him by telling him “Look, there’s Fluffy!” (the neighbour’s cat, who he loved) and the drops would be swiftly popped in when, duped again, he opened his eyes to look.

She giggled and told us how it had taken him the longest time to cop on to the ruse.

She laughed.

In spite of all the trauma and heartache, she laughed. Delightedly.

Because her son is now a strapping, capable man with, artificial lenses he chose as a teenager, and a full, independent life.

Because she wasn’t left wondering for months what was wrong or how she could possibly afford the procedures and treatments, or even whether they were available to her.

Because the free, local, NHS healthcare system had supported the family so well.

Because her son can SEE.

 

Can you imagine the anguish and hopelessness felt by families where treatment options for children are not so straightforward? Or how great the impact of raising a (curable) blind child? What would you do if it was your child?

Sightsavers.org* is a UK-based charity operating internationally to help rectify as many as possible cases of preventable blindness, including congenital cataracts. FIND OUT MORE HERE.

*Not a sponsored post or anything – I’m not affiliated with them – they’re just doing GOOD THINGS, and I want to share that.

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35 thoughts on “He Loved the Headlights

  1. Though I love Guide Dogs for the Blind, how wonderful it would be if the need didn’t exist! I’m glad that boy was able to grow up without the challenge of blindness.

    Liked by 1 person

  2. I love your tales from the van. You meet some of the most interesting people with fascinating stories! Although I was kind of holding my breath as I started. When I saw “He loved the headlights,” I was wondering if the post was going to be about breasts.

    Liked by 1 person

    • BWAHAHAHAHA Ohhhh you know me almost too well! I NEVER THOUGHT OF THAT, but I do tend to get called out for talking about boobs A LOT! Mostly on Facebook, it has to be said *grins*

      I’m glad you liked the story though.

      Like

  3. Pingback: Ten Things of Thankful #84 | Considerings

  4. What a wonderful story of a heathcare system working. The USA is ridiculous in not embracing nationalized heathcare. We now have in its stead, forced privatized healthcare – a boon to the insurance industry, not to consumers or to providers, for that matter. Insurers in the US are famous for not paying, for declining claims.

    Liked by 1 person

    • Not just the elderly, either – this lady probably wasn’t older than my own mum. And we see children from age 12, though because of the skew in prevalence in diabetes, I’d say that about 75% of the people we see are 55+.

      I do love to hear their stories, if I have time 🙂

      Like

    • Healthcare in the US has made the headlines so often, and it’s such an emotive subject for SO many people. I know too many people who have had bad experiences with it, and whose insurance has let them down or they’ve been told they don’t meet criteria or…it’s just awful. I feel as though I really am in the lap of luxury to have the run of a free system here. I am so blessed! I know that without it, Husby and I probably wouldn’t be here. He certainly wouldn’t be!

      Like

  5. My niece, Lucy, was born blind in one eye. It wasn’t until she was 18 months old and was scared to walk that it was discovered. The best way to approach these things, as far as my family is concerned, is to accept things and laugh. For a couple of days after the diagnosis, my brother nicknamed her Luclopse.
    A good friend has a son who was born with cataracts. It is absolutely amazing what can be done for kids with these problems. Scary, to be sure, to have the surgeries, but we’re so grateful to have the ability to help these kids see. And of course, little kids with glasses are just adorable! 🙂

    Liked by 1 person

    • LUCLOPS!? That’s amazing! She doesn’t still get called it, does she?

      But so cool that they got the support and help and people gathered around them that they need, for her and for your friend’s son.

      Kids with glasses can be ADORABLE. And yes – surgeries, however scary, must surely be better than the alternative! Not a thing I’d like to go through, though. But thank goodness it’s POSSIBLE.

      Like

  6. oh my GOSH what a great story!! I love it, and I’m so grateful she had healthcare and her son can see. Just yesterday I watched a thing (I think it was on FB) where an deaf African boy learned to communicate via sign language for the first time in his 16 years. A deaf man learned to sign, and then came back to his village to teach other deaf people. It was inspiring and sad and happy all at once. I totally teared up because my oldest has an eye issue (Ocular Albinism) and I’m so grateful for the doctors and surgery we were able to get for him. I remember like it was yesterday, at his 2 month doctor visit, mentioning (at the last second) that I was concerned about his sight because all the books said he was supposed to be making eye contact with me and we were supposed to be having these amazing “locked-eyes bonding moments”….and D was always looking past me. Sure enough, she looked more closely at his eyes and said, “Well, he’s not blind, but something is definitely wrong.” We were referred to a specialist and WOW that was a horrible wait!!! Fortunately, his diagnoses was not devastating. He can see extremely well, although he’s very farsighted and will fail every eye test forever. He’s not “legally blind” at this point (which is just a measurement and does not necessarily mean someone can’t see at all. My SIL is legally blind and we ski together!), but he could deteriorate over the years. His surgery corrected a pull to the right, so now his eyes rest at center like everyone else. You’d only know something was “strange” if you spent some time with him and noticed his nystagmus (tiny jerking movements of the eye back and forth). Our biggest concern is that he wouldn’t be able to drive, but it appears he will be able to. *crosses fingers* He’s just 10yo so it’s hard to say what his eyes will be like in another 5 or 6 years.

    Wonderful post, BW. xoxoxooxoooxoxoxo

    Liked by 1 person

    • Fascinating – I just looked it up! (you’re bound to have researched it all) I now want to look into the back of YOUR eyes and see if there is any mottled pigment. Fascinating, but so good that the treatment and medical support was there for D when you all needed it. So I guess that his vision improved, did it? Did you get the eye-starey moments? I hope you did. YAY that he should be able to drive. That’s big 🙂

      And yes, thank GOODNESS that this lady was able to get her son seen to rapidly, and sorted out, even in spite of all the difficulty and heartache which must have gone along with it 🙂

      Liked by 1 person

      • Oh yes, I got (and stil get) many starry eyed bonding moments. And ugh, googling ocular albinism is scary. Fortunately he has a mild–medium case. Those with a serious case have it much worse, getting teased in school and such. 😦

        Liked by 1 person

        • Ahhhh I’m glad you got those moments. And that you still get them 😀

          Yes – the Google certainly has the horror stories, but I tend to stick to journals. It sucks that kids get teased for this. I’m glad D’s case isn’t serious.

          Seems like kids (or people at large) will pick on anything they can that is ‘different than me’, and that’s awful. We need to keep fighting that.

          Liked by 1 person

      • And I had an optometrist tell me once he could see the signs of being a carrier (it’s only passed from the mother, and primarily to their sons, but girls can get it too) it I have no idea what he saw!

        Like

        • That could be it then – perhaps it was a mottled pigmentation in your retina (seems to be what the sign is). Hmmmmm.

          This just feels so normal to me – to be filling my mind with thoughts about eyes 😉 Hazard of the job, I guess!

          Liked by 1 person

  7. I can’t even begin to step onto the soapbox of what’s wrong with healthcare so I won’t.
    But…this:
    “She laughed. In spite of all the trauma and heartache, she laughed. Delightedly”
    What strength of heart and character for someone to be able to laugh when recounting a story that is really so sad. The great thing is that she and her son have come past it and CAN look back and laugh at the parts that strike them now as funny, ridiculous, whatever. It speaks loudly of what a little bit of perspective can do. To be able to laugh despite what tries to knock us down…a priceless tool.
    I love tales from the van. You find such fascinating things there!

    Liked by 2 people

    • Yes – that really struck me too, I mean, she was recounting such awful, traumatic moments as she related how she’d dealt with her son’s treatment, and the idea of having to pin down a small child and force lenses into his eyes, or to WATCH that happen to your own child…horrific…and yet she was just so thankful that the treatment was there, and she knows that he’s grown up into a healthy, fully sighted individual, and there was such pride in her voice as she talked about him. He’s a scaffolder now, and she laughed that he MUST be able to see where he was going, or he would fall off!

      I am so lucky in my job, to meet such fascinating people 🙂

      Liked by 1 person

      • Wow, that is really amazing – a scaffolder??? Yeah, I would think good eyesight would be key for that job! I can remember holding Zilla in my arms with terrible terrible flu when she was a baby…just felt so helpless. The worst we had to do was get some meds into her via dropper, though – nothing like holding her down to pin lenses into her eyes. Ugh. Amazing the things we find we can do when we just simply have to.

        Liked by 1 person

        • Yes. I once took Niece to the doctor’s when she had strep throat, and in order to diagnose it, the doc had to take a swab, and the poor child – I had to hold her down while she cried and screamed and bellowed because she was so scared, and she was shaking by the time we were finished. I was nearly in tears myself! I think she was about 3 at the time.

          But yes – he had corrective lenses put INTO his eyes, where his real lenses would have been, and apparently they’ve made all the difference 🙂 AMAZING what’s possible now.

          Liked by 1 person

  8. What a beautiful story! And I love how you use this to open our eyes 😉 to the failure in our (the U.S.’s and others’) healthcare systems. This is one subject I’m extremely passionate about. I watched my parents struggle to pay my brother’s medical bills and they had insurance! It was an astronomical amount of money. Thank god we had the means to do it. Can you imagine a loved one suffering or dying because they COULDN’T AFFORD TO GET TREATMENT? It is outrageous that money can mean the difference between living and dying or treatment vs no treatment. Damn. You’ve got me all worked up. I may have to write now…

    Liked by 2 people

    • *hugs* Didn’t mean to get you riled, G, but SO VERY YES! It sickens me to think that people might die or have their whole lives compromised because they’re unable to fund treatment. And the cost of insurance and treatment over there is SICKENING. Really, truly awful and quite literally adds insult to injury.

      I hate it, and quite often am surprised by just how VERY good I have it here, and all English, really…and how much we take it for granted. The NHS is a treasure and I don’t want it to change.

      I hate that you had such a struggle paying for your brother’s treatment and I hate that it put pressure on already vulnerable people in a fragile situation. I think the US system stinks, but I guess at least there IS healthcare there…which is a blessing when you compare it to there being none at all *sigh*

      Like

  9. Oh, what a story!!! Bless this mama’s heart for taking her baby out at night to give him that joy he needed, in SEEING the headlights!!! What a powerful turn around and it’s just incredible that they had the financial support to take GOOD care of their baby. Thank GOD the outcome was beautiful for this child, now healthy vital adult!

    Liked by 2 people

    • I know! That really touched me – that she’d noticed and that she was doing such a lovely thing to bring her son happiness.

      The healthcare is free – that’s the difference. No financial support needed, and it’s AMAZING and a miracle, and the govt currently want to mess with it, which SUCKS and I’m angry about that.

      Like

    • The thing which hit me so hard was that if this had been a story in America, or India, or Africa…the outcome would have been so different – crippling bills, or a blind child. I am so, SO lucky to live in this country where the NHS takes care of people’s healthcare. It’s SO vital, and SO gets taken for granted…

      Like

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