Hello everyone!

[Josephs_Daddy]

Sorry I haven't been around for squillions of years! So much has been going on!

We've had extensive testing on Joseph's sight as he has not been responding to basic visual indications. He had electronic Light Testing and it registered little or no reaction.

After further photographing of his retina, it shows further scarring and damage.

We've been told that he seems to have a very rare retinal disease which the Opthalmologist has never seen before, so he is taking Joseph's pictures to a yearly national convention to show them to other eye surgeons and try to find some further answers.

It's worrying. He's already registered partially sighted but we've now been told he'll be registered blind. So upsetting given what he's been through

I just wondered if anybody else has been through something similar, and basically, how do you cope?

Thank you!

 

[deafgal01]

Speaking from my point of view (I may not ever experienced being blind but I'm deaf in both ears since I was diagnosed at 2 1/2 yrs old), I would try not to worry too much about your child's label of being registered blind. Afterall, a disability only seems to be a disability from a certain point of view. It sometimes can be a blessing in disguise for some odd reason. I don't consider myself disabled just because I can't hear- hopefully you'll raise your son Joseph to see that he doesn't have to consider himself disabled just because he can't see. Good luck to you - wish I could be of more help in how you can cope with this news.

 

[Josephs_Daddy]

Speaking from my point of view (I may not ever experienced being blind but I'm deaf in both ears since I was diagnosed at 2 1/2 yrs old), I would try not to worry too much about your child's label of being registered blind. Afterall, a disability only seems to be a disability from a certain point of view. It sometimes can be a blessing in disguise for some odd reason. I don't consider myself disabled just because I can't hear- hopefully you'll raise your son Joseph to see that he doesn't have to consider himself disabled just because he can't see. Good luck to you - wish I could be of more help in how you can cope with this news.

Your answer helps a great deal, and I respect your courage and what you've learnt to deal with.

It's not the labelling as 'blind' that worries us. It worries us that he's going to face so many challenges, things we don't know nothing about yet. I know we'll receive tonnes of support and help along the way. But I worry. Will he go to a regular school? Will he be able to see his Mummy and Daddy, ever?

He's our little star and nothing will ever ever change what he means to us. It's just a frightening time.

 

[deafgal01]

Maybe you could try and find a community/people who are in the same shoes. I wish I knew of support groups and stuff like that out there for you. I know there is such things because we have parent organizations here in my state for parents who have deaf children. That way you'd have someone you can seek advice from regarding Joseph's future. I think he'll be able to attend regular school although he will need accommodations to find his way around and learn the things he needs to know. I always think that we are always given just the right challenges (no matter how many there is) to overcome. I hope that Joseph will be able to see his mummy and daddy, but even if not, he will always be able to see you two with his heart (if I make any sense there). Hopefully the medical world will advance in the next couple years that they'll be able to help Joseph with his eyesight if there's a way to fix/cure them.

 

[Bec L]

Sorry no advice/experience but just wanted to say hey It's good to see you back on here and get an update on little Joseph.

 

[vermeil]

Hello! My sister's friend had a baby full term - they found out within a few weeks that he's completely blind. A rare issue with the retina, dang I can't remember the name of it now!

She took it very, very hard, and cried for months. But you know what, as time goes by she's realizing he's a perfectly happy baby. His perception of the world is just different. He'll be going to a special school to learn braille. I've seen him play with the other babies in my sister's social circle and he has just as much fun. It's true though he needs a bit more supervision, someone to show him the layout of the room. Then he's fine, runs about, dances and just has a grand ol' time.

My own preemie had severe retinopathy for a few weeks - He was 2 months old (corrected), got to grade 3 and they were talking about surgery. Then within a week it improved suddenly to a grade 1. A month after that his eyes were declared totally healed. I was sooo worried at the time.

I know this is of little comfort but try to keep positive - in some cases now they can do a retinal transplant and give him partial, if not total vision. *hugs*

 

[Josephs_Daddy]

It's only just hit me today. When I was watching him wake up this morning. I've tried to stay strong because my OH isn't coping too well and I've built it all up but I can feel my legs going weak, and I've just started work and don't wanna make a fool of myself.

 

[Laura2919]

It's only just hit me today. When I was watching him wake up this morning. I've tried to stay strong because my OH isn't coping too well and I've built it all up but I can feel my legs going weak, and I've just started work and don't wanna make a fool of myself.

I cant imagine what it feels like but its ok to not be strong all the time. Your all going through a tough time so dont hold it all in or it will come crashing down all at once. Talk to your OH you could both do with some comfort.

 

[25weeker]

I agree you should speak to your oh as it could help you both.

We lost one of our twin daughters and our surviving daughter had a grade IV ivh so we have to wait and see how it will affect her. Over the past year we have coped by talking to each other. From my point of view I always prefer to know how my oh is feeling rather than him saying nothing as we are both going through the same thing.

I hope you get on ok in work.

Take care

 

[Marleysgirl]

Andrew has his sight, but has a hearing loss - he's in his second month of wearing aids. My emotions are still varied, some days I've come to terms with it, other days I worry horrendously about his future. Funnily enough I know more about blindness (I worked at RNIB HQ for 4 years) than I do deafness.