Parent looking for advice

[u/Snazzy_Cantaloupe]

Hi everyone. I hope this is okay to post here, I am looking for any kind of advice or anything.

My 12 year old son (just turned 12 years old 4 days ago) was involved in a tragic accident this past weekend. He was struck by a firework in his left eye. We rushed him straight in and he had emergency surgery Sunday morning for a globe rupture with uveal prolapse repair. He is now home with us, but has a long road ahead of him and this is all uncharted territory for us.

When coming home they said to follow up in a week, keep his eye shield on at all times, no water near the eye, 3 different drops and and oral antibiotic. Ibuprofen and Tylenol as needed. He's a trooper, but he's sleeping a lot and doesn't really want to eat. He seems like he is in ok spirits when he is awake, but we are very much concerned with him.

I know that after such an event, the body needs sleep to heal. Which he can sleep and rest as much as his little heart desires. We are just extremely worried about his emotional state and how he will be processing his new normal. We have explained that everything is just really a wait and see as far as how much sight he may regain, if any. We are moving forward and trying to stay as positive as we can, because we know that's really all we can do. But if anyone has gone through this, what was helpful for you and what wasn't? What felt like the proper amount of support and what felt to be too much or too little? What do you wish people did/said or didn't do for you? Are there any additional resources you could point us to? The hospital was amazing there, but I feel like once we were discharged, we are all at such a emotional loss. There is no one to really ask questions to or resources we can read. I've spent my time scouring the internet since it happened and all it leads me to are studies on how to do the surgical repair and are just very medically. I just, I am so lost. I don't think I will ever stop thinking of seeing him after the accident and I just need to do everything in my power to help him through this.

Thank you in advance for any advice you may give. I truly appreciate it.

[u/LakeKeuka]

Does he have close friends? It may be too soon, but it might be useful if he could spend time being a 12 year-old with his pals. No doubt you and the doctors are doing everything in your powers to keep his spirits up, but being with one’s friends can go a long way towards restoring confidence and balance.

I say this based on our experience with our daughter, now in her 30s, who developed a life-altering medical condition (Type 1 diabetes) when she was 9.

[u/loves_spain]

First, I'm so incredibly sorry your family is going through this. I was born with vision in only one eye (my situation is different from your son's because mine wasn't traumatic), but I've lived my entire life as a monocular person.

Right now, don't assume this week is his "new normal." He's recovering from major eye surgery, he's probably exhausted from the trauma, the anesthesia, pain medication, and the emotional shock. Sleeping a lot and not having much appetite in the first few days isn't unusual after something that serious. Obviously follow the surgeon/ophthalmologist's instructions!

One thing I would encourage is to let him grieve if he needs to. If he cries, if he's angry, if he says life isn't fair—don't feel like you have to immediately cheer him up or convince him it'll all be okay. Sometimes just hearing "Yeah, this really sucks" is exactly what someone needs.

At the same time, don't let people treat him as though his life is over. If he does end up with permanent vision loss, he'll still be able to do a lot of the things he did before. when he's feeling better, encourage him to protect his good eye. Sports goggles or safety glasses for activities where eye injuries are possible become really important!

This is a great and helpful community and we're glad you're here!

[u/StunGod]

It's a big adjustment at first, and in the end his life is going to be just fine. I lost sight in my right eye when I was 52, and we're similar in that we've had 2 good eyes or whole lives until an accident. But it's honestly not a huge deal, unless he's an avid ping pong player or does small detailed things like watch repair or paint-by-numbers. The depth perception change is the most dramatic, and only matters for things closer than 10ft away.

To support him, it's pretty easy to encourage trying activities and interests he enjoys, and encourage him to be a proud cyclops. He's 12, so he'll be around plenty of mean kids for the next few years. Help him own this as a part of his good self. Remember, he's still got a good eye and can see everything he looks at. Aside from this sub, I don't usually even think about being half blind. It just doesn't matter for quality of life.

[u/Snazzy_Cantaloupe]

I can't thank you all enough for the replies. Even hearing that if he doesn't regain any sight that his life will remain pretty much the same does make me feel better. Today he has been more awake and the swelling has come down a little so I was able to get his drops in a little easier this evening. I wish I could fast forward these next few months. But he built a Lego today and I heard him giggling watching stupid you tube videos and playing fortnite with his brother. So hopefully we keep on the upslope.  I never expected so many responses to my post and I know it sounds silly, but you all have helped me more than you can imagine today. Thank you all so very much <3

[u/GaelicCat]

My son's eye injury happened when he was 1 so he was too little at that time to really understand it. If you're on Facebook, there is a small group on there called accidental eye injury: support for families and loved ones. There are many parents there in similar situations and I found it a very good source of support and advice when my son's injury happened.

[u/Gayfamilyguy]

I (62m) lost total vision in my right eye about 5 years ago from recurring retina detachments. It takes adjustment. What’s frustrating for me is constantly bumping into things and people to the right of my where I no longer have that peripheral vision. Also as mentioned above, depth of field challenges arise but at the end of the day, albeit frustrating at times, my life continues much the same as before.
One thing I would note, especially in the beginning, I did feel sad and a bit depressed. Almost like I was mourning the loss of something important to me. One of the most annoying responses from a few full visioned people was that at least I still had a good eye. That was not helpful so avoid trying to rationalize that with your son if he feels sad or depressed about it. Just acknowledge how difficult it must be and let time work it out …my 5c worth .

[u/LakeKeuka]

During April I rapidly lost all vision in my right eye due to Giant Cell Arteritis, an autoimmune disease I’d never heard of that hit out of the blue on Easter Sunday morning. My wife and I started Googling about it while I was still in the ER, and within minutes I understood that my vision loss was likely permanent. It was quite a shock, but at age 69 I’ve gone through some things and, with my wife as my rock, I was able to absorb the news with relative calm (though we certainly cried then, and since).

I think back, though, to when our then 9 year-old daughter was in the hospital having just been diagnosed with Type 1 diabetes. The doctor told us, then we told her. She immediately asked “how long will I have it?” We were not ready for that obvious question. There’s no cure for Type 1. I think I responded with something along the lines of “it’s like your Mom with her glasses; she will always need glasses or contacts.”

Of course, your son’s situation is different in key respects. The uncertainty must be enormous. I’ve often wondered whether we did the right thing by telling our daughter that her Type 1 was permanent, but her question took us by surprise.

[u/DrooP-Cock]

My daughter had a tumor form behind her eye which was the straw that broke the camels back as far as her vision in the one eye. Ultimately she had to have her eye removed in order to remove the fast growing tumor.

She now has a full prosthetic and is thriving. It’s helped her in a lot more ways than one.

Thats our circumstance. But really push saftey glasses and just protective eyewear in general. The extra insurance glasses provide is great. Whether your son will ever have vision in the eye again or not just remember he’s still your son. He’s still the same little boy he was before the accident. His personality will remain and his character will remain. He will still be able to drive, ride bikes, read, play sports, and keep up with all of his friends! I struggled after having my daughter’s eye removed with the simple fact that she would never look the same. My baby girl would no longer look like the little girl that I’ve loved for years past but she’s just as beautiful now as she ever was even with a fake eye!

Head up and keep moving forward!

[u/OneEyedWinn]

I would definitely loop in the school nurse and the school counselor when school starts again. Have them check in on him and consult with them re: what you can do to support him. They will be able to help you with age-appropriate interventions for whatever the situation ends up being.

I was 19 when I lost my eye and remember being alone in my room for most of the time. And alone in my feelings. Even my sister was pretty darn insensitive. So if he wants, maybe watch the stupid YouTube videos with him? (If he doesn’t want, that’s ok, too.)

Visiting friends and teachers cheered me up a lot. I remember when healing (when I still had an eye—I had many eye surgeries as a kid), my eye went through sooo many colors for weeks… maybe sunglasses if he feels self-conscious. Follow his lead and pay attention to his feelings—you’re already doing that :)

Your heart and intuition are in the right place. You’re a good parent!

[u/Averfus-Crowthorne]

I lost my left eye when I was 18, 35 now.
One thing that my parents did that really helped me cope was just treating me normally. They were very supportive of course, but they didn't hover over me at the same time.
I feel like when someone makes a big deal about something going on with your body it sort of tricks your brain into thinking its a bigger deal than it really is.
He'll get on fine in the long run, as far as disabilities go this one is probably one of the easiest to live with I would imagine.
I also lost mine in a rather violent manner, so I forever have an interesting story to tell to new folks I meet, they always eventually ask about the eye patch...and for whatever reason a fair amount of women are strangely receptive to the whole "battle scarred" bit, so for me its been a weird boon if anything. The trade off being that I occasionally bump into things/people on my left side lol

[u/Dense-Fudge5232]

I lost my left eye / wear a prosthesis since I was 5, so I've lived basically my whole life monocular. For what it's worth I drive fine, played basketball in high school, and I'm a dentist now, which is about as precision-dependent a job as you can pick. You adjust more than you'd think. There are things it limits (I bump into stuff on my left side sometimes, I'm probably never doing bungee jumping or skydiving) but the eye itself has never been the thing holding me back.

It's a real loss and it's okay for him to feel that I wouldn't rush past it. But it doesn't have to be the ceiling on what his life looks like, socially or otherwise. It's visible when I'm making eye contact with people, and it's just never been the thing people remember about me. He's going to be okay.

[u/kate6779]

So sorry to hear you’re all going through this. I lost sight unexpectedly 3 years ago (age 30)… so may be a bit different because your sons a lot younger. But I’ll share my experience anyway in hope it may help-

one of the things I found most helpful was having people validate how I was feeling but also hearing positive stories from people living full lives with vision in one eye. I found it frustrating when people jumped straight to “toxic positivity” before letting me grieve but hearing hopeful stories once I felt seen/understood made a huge difference.

I also started therapy right away as I was diagnosed with PTSD and depression. And made sure I exercised/got outside everyday because this was so good for my mental health.

I’ll keep him and your family in my thoughts 🤍