Dealing with Joey's (TwinB) blindness

So it has been absolutely forever since I've been here but just wondering if, for those of you with special needs kids, ever just struggle still. The twins are 25 weekers and just turned 6 in March. I KNOW we are lucky to have 2 heathy, happy 6 year olds (and a 4 year old boy too) but we just had another exam for Joe and it wasn't what we wanted to hear. His ROP was grade 4 and 5 so after all of the surgeries, his eyes don't dilate so he had to be put under to get a thorough eye exam. His right eye is detached again fully so that eye is totally blind with no options to help it in the future. We thought it was still partially attached so he was up for stem cell and other advancements but not the case. We found out the left eye looks "normal" which is NOT what we expected as we thought there were issues causing him to be severely impaired in that eye. Since everything looks as it should, it now becomes an issue of his brain or the eye itself just not functioning together as it should. So, again, no chance to be helped by stem cell / other advancements.

Now I realize that NOTHING changed for Joey and he's doing great in school (Y5's this year so K in the fall) but it was just a gut wrenching blow for me I guess. DH and I have struggled for years with our relationship and he just mentally left for 3 days prior to, day of and 2 days after the surgery day. Didn't speak but to make sure I realized this was all my fault as I couldn't keep them in for longer than 25 weeks. I guess that's an entirely different topic I won't start but I'm truly sad about.

I think I just need some chat room thoughts, prayers and hugs sent. The exam was almost a week and a half ago and I'm still in tears as I write this. Do any of you still struggle sometimes with the challenges your babies will face and struggle with in life?

 

Oh wow. First, I am so sorry that your husband isn't being supportive right now and that you received such tough news from the opthomologist. I don't have experience with what you're going through, but I can tell you that it is not your fault. PTL is a crazy thing and nobody knows exactly what factors or combination of factors can cause it. My girls were 30 weekers and I still can't get my head around why the came so early.

What miracles you have! To be born so early and be so healthy and smart! Do NOT let your husband make you feel guilty and do NOT blame yourself. All you can to is be a supportive and loving mom (and it's obvious that you are!). It's okay to cry and be sad an angry for the changes in your plans for your son. That's perfectly normal and okay too.

Please come on and vent and cry away. That's what we're here for.

 

I am sOO sorry for what you are going through. I don't think many people realize the impact preemies/health issues can have on a marriage.
The one that that never ceases to amaze me through it all is how strong these little kids are. We see the issue at hand, what they are/will struggle with, but the kids don't deal with that. He will be fine and I know you know that. But the best thing you can give him is accept where he is. Let him know, that although he may have a blindness, nothing will stop him. So much of how he accepts it will come from you. Probably the reason they are doing so well now...is because of how you have handled all of it. They are smart thriving boys....you can't help how early they came, or what life has thrown at them, but you have certainly taught them how to thrive through it all.
I look at Mitchell's voice, and how it will never be the same as everyone else's. And while that won't affect his sight or hearing, its something I always feel guilty about because it is more likely cause by his prematurity. He has had some kids (and adults) tease him that he sounds like froggy from the little rascals. I worry about his breathing constantly and how he will live not knowing if he could just stop breathing like he has done in the past...And McKenna still has a small portion of her brain that is dead, still showed up on an mri 2 years ago. I worry if that will affect her somewhere in life. Hasn't yet, but will it. I just have to hope not!

The great news is that his other eye is normal right? So he can see out that eye right?

Big hugs to you for all you are going through. I hope your husband realizes how he is acting and comes around. Perhaps his blaming you is his way of dealing with the news?

 

Well, crud. I hope there are some medical advancements in the near future that can help your little guy.

I have no words. I'm sorry. :grouphug:

 

That is so unfair and untrue. I'm so sorry :cry: As if we don't blame ourselves enough anyway. I understand how this must've been a tremendous blow for you. I hope that there is something in the future that can help. I agree so much with Jen that we can't change what life threw at us, but how we're reacting is where our children will get their cue. I hate seeing the impact prematurity has on my children, but I love the fact that they are here with me and I choose to focus on that. I hope your husband is able to see that eventually. :hug: :hug: :hug:

 

I'm so sorry for your news and the challenges with your husband. I find that no matter how hard I try to focus on the positive with the boys, it is so hard when anything is different or problematic. Just like you said, I think about how these babies are absolute miracles but I still struggle with any set back and it takes serious time to process it. You are a strong Mama and I'm sure you will advocate for you son as you have practiced starting in the NICU. Thinking of you and hoping it gets easier!

 

It's nice to see you around here again. :wavey:

I'm sorry you are going through this. :hug: I'm sorry to hear that there are no options for his right eye. :hug: But I am very glad to hear his left eye looks normal, that is great news. And I'm glad to hear it's not hindering school for him, those are both positives. You sure do have some miracle kids. :wub:

I'm very sorry that your DH is acting like this and blaming you for this. :hug: It is not your fault at all and there was nothing you could do to keep them in longer. But I know it tugs on your heart probably. There are days I still feel guilty for mine being born so early, but I do know that there was nothing I could do to prevent them coming so early. But it's hard. So I'm sorry to hear someone else is telling you this. That doesn't make things any easier for you. Like Jen said, I hope your husband realizes how he is acting and comes around.

 

I don't normally post here since I didn't have twins in the NICU, but I wanted to lend you support. Our special need is Hemophilia, not blindness & only my 3rd (2 1/2 yr old singleton) son is affected. It's a chronic illness that is genetic so we know that it will never go away or get better. We've been dealing with it for 2 years now and still when we have to go through a procedure or some part of daily life is altered or a struggle it can sometimes be hard. I will find myself trying to wish it away or feeling guilty because in our case his illness was inherited from me. Even though he's very well adjusted, things like having to keep him home from his preschool water party for safety reasons, or dealing with the people who stare at his bruises & comment on his medical bracelet or give us their well meaning "poor baby" comments can be hard for me to accept. I know that he doesn't know the difference and that for him things are "normal" but it doesn't change the fact that I want to make him completely healthy and take away his difference & I will always have the occasional days that the fact that I can't will be something that I can't accept. That's part of being his mother, though. It means that I love him & that I want his life to be easier for him & for his health to be better. It doesn't mean that I am ungrateful or unaware of the miracle that he is or that I can't appreciate the wonderfulness that is my son. It's just that I love him & would take away any challenge for any of my kids if I could. You are a good mother for loving your son & wanting things to be better for him. All of the days won't be difficult & you can still hope for a better prognosis while still recognizing that where ever he is in life right now is a blessing. Wanting the best for him in life doesn't lessen that. Hug him today knowing that he has a mother who loves him & is his advocate.

 

:grouphug:

My DDs were preemie- 8 weeks.

We face residual effects. DD1 is incontinent--- her digestive system never matured right (or so the Dr think) and she still struggles w. reflux & being non-potty trained at 5.5 .Otherwise she is doing fabulous after years of OT & PT (for both DDs), but the social stigma about her condition is what I worry about the most. I feel a lot of guilt over it, though I am confident my DR and I did all we could to get as much time as we could. I still feel guilty and had hoped we found resolution by this age...but not yet. Hopefully in the future. Both DD2 have asthma, which is mild-- but likely a result of prematurity. In the big picture, they are doing great. They are doing so much better than the potential outcomes the NICU Dr presented us so many years ago!


I am so very sorry your DH is not supportive. I cant even imagine.

I hope the boys have a GREAT year in Kindergarten and your DS has some fantastic support staff in the school system!

 

I just wanted to send you a lot of hugs and prayers.

 

I hope you are able to reach out into your community of find support. I babysit for a girl who was blind from birth. She is completely blind which is actually rare most who are visually impaired have some eyesight even if they only see outlines or shadows. It was due to a hereditary condition. In fact the condition usually goes hand in hand with mental retardation however she was very lucky and had a high IQ. I started babysitting her when she was 3 years old. I remember sitting on her kitchen floor with paper and scissors cutting out things for her... sun, moon, cow, horse. She ask what does the sun look like or what does red look like. I cut and she felt those shapes. For hours. We felt every crack in the side walk from her house to the playground.

She went to camps, swam on a swim team, traveled to conferences by plane on her own in high school, learned to scuba dive, joined a group of visually impaired/sighted kids and hiked the Andes and climbed Mt. Kilimanjaro. She attended a special rocket camp at NASA for visually impaired kids and went back the next two years as a mentor. She even interned at NASA while in college. She graduated college with a degree in engineering and now works for the FBI. She owns her own condo and lives more than 1000 miles from her parents with her Seeing Eye dog.

One day we were out at lunch when she was home from college and she told me that if there was ever a medical advancement that would cure her blindness she wouldn’t take it. She loves who she is and being blind is a part of what made her who she is today. She had no desire to go back and change anything about never being able to see a sunrise. She didn’t feel like she missed out on anything.

Sometimes parents worry more than kids. Sometimes it is a far greater devastation to us then it is to our children to have a disability. For them it is just a part of who they are. Good or bad. It is a part of their life.

 

Oh, man. This reduced me to tears. What an incredibly inspirational woman.

 

i have nothing to say that's helpful except to tell you that i'm so sorry about all your struggles. i know you are grateful for what you have but it's totally understandable to be sad about the vision, as well...... i hope you can find some support or at least take care of your own self while you deal w/all of this.

lots of hugs and best wishes,
jl (momma to 27 weekers)