Bad news (Aidan)

While Aidan's bloodwork for any chromosomal issues came back normal, I'm afraid the news isn't so good for his eye problems. We already knew that his left eye is physically smaller than his right, and that he has a thing called "coloboma" in it - which means a section of the retina is missing (and in Aidan's case, a huge chunk of it). Today we found out that he has coloboma in his right as well... It's way too early to tell exactly how much of an issue it'll be right now but there's a good possibility that his eyesight in his right eye may be as poor as 20/200... which means he'd be legally blind... never able to drive, to play catch with Josh, to enjoy a baseball game, etc. But as I said, we won't know the full extent of the problem for another 3 or so years, until he can tell us what he can and can't see.

The opthamologist says it's nothing I did (even though it happens during fetal development, so I don't know how it couldn't be my fault), but every time I look at the poor kid, I break down into tears and tell him how sorry I am I couldn't get it right.

It's just not fun when the doctor starts mentioning how great the programs are at the Maryland School for the Blind. :*( This kid doesn't deserve this ****** break.

Anyway, just thought you'd all want to know.

I have no words that can truly comfort you, but try to believe that there ARE things out of your control and you can NOT be to blame for this.

Aidan will grow up with loving and caring people around him and that is much more important than catching a ball.

And keep the faith. Nothing is 100% certain yet, and medical advances happen every day.

{{{{{{{HUGS}}}}}}} to you and your family. And prayers as well.

I am so sorry. As jenluckebach said, nothing is 100% certain. An operation may become possible as he gets older.

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Originally Posted by jenluckenbach

I have no words that can truly comfort you, but try to believe that there ARE things out of your control and you can NOT be to blame for this.

Aidan will grow up with loving and caring people around him and that is much more important than catching a ball.

And keep the faith. Nothing is 100% certain yet, and medical advances happen every day.

{{{{{{{HUGS}}}}}}} to you and your family. And prayers as well.

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I have to second what Jen said...and I am sure I can't say anything that will comfort you, especially since this news is so new to you. ((((HUGS))))) Someday when Aiden is grown, he will be able to tell you that this wasn't any fault of yours, just seeing the love that you have for this little man will already supercede anything...a mother's bond to their child is like nothing else...this bond and your love will help you to face the road ahead. Again, I know words can't really comfort right now...but i will certainly pray fo your little guy...(((HUGS))) again.

Robyn

I am so sorry to hear this. Hugs and prayers coming your families way. Even if it is a fetal development, it is still not your fault, you couldnt have done anything to change it.

Very well put, Jen. And she is right, there are some things that you just do not have any control over during the development of the baby. What you do have control over and I am sure you will have no problem with is how you care for and love this little boy. I think that Aiden is very lucky to have two such loving and caring parents to help him grow. Even if he does have vision problems there is so much you will be able to show him, and I am sure he will grow into a happy well-rounded young man.

I am sorry to hear it. I also agree with what Jen said. Please don't blame yourself!

{{{{{{{hugs}}}}}}}

Jaime, my tears are flowing for you - especially after I read what Jen wrote. It is so true. I can't imagine how hurt this makes you feel but, it really cannot be your fault. I am sure you and Josh will raise him to be a gentleman on so many levels.

{{HUGS}} to you.. Your baby boy is just too precious. Has he tried on the gifts I got him yet? :p ;)

Big hugs to you.

Now, even if he's 100% blind, he can still play catch with Josh! Not with a baseball, but with a ball that makes some noise, jingles or rattles. Still, though, No Playing Ball in the House! Just figger you should establish that rule early!

He can still enjoy a baseball game - by listening to it on the radio, like I did as a child. I have always been awful at sports, so didn't enjoy striking out, or not running fast enough to first base, though I was always the catcher, so I usually caught the ball okay. But I enjoy watching (or listening to people who ARE good at it! He can be 100% blind and still do many, many things. He could be a musician, a composer, a scientist, a teacher, a laborer at many things, a sculptor, a politician or nearly anything else.

Don't be too sad, sweetheart. Even if he just has 20/200 vision in one eye, that's a lot! He'll be able to see colors, which I cannot imagine not knowing about. Even that is an amazing gift we all take for granted.

And he can be the most important thing in the world - a happy little boy. And someday, a happy bigger boy, and some day a happy adult.

He is a sweet, precious being that Josh and you - through much difficulty on your part especially - brought healthily into this world. And he has more aunties here at Pet Talk (and some uncles as well) who already love him, pray for him, and look forward to watching him grow.

Sending you big, bracing hugs. And a shoulder or two to cry on, too, if you want it. My family jokes that we have terry-cloth shoulders - nice and absorbant, okay to cry into.

Kiss Aidan for me, okay? Right on his wee little button nose!

Karen couldn't be more right Jamie. There's lots of things he WILL be able to do, try to look at it that way.
And please, don't think it was anything you did.

{{{HUGS}}}
Anna

Aidan is a precious gift, no matter what physical challenges he may have. He has you to guide him and love him. He is blessed and so are you.
Hugs.

{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}

I can not even begin to know how you must be feeling. Perhaps you can focus on the things that he can do rather than the things he might not be able to do.

As Jen so eloquently said, there are medical advancements everyday. Nothing is certain. Besides, maybe Aiden would be more of an artistic type than a jock? You never know. Please don't be so hard on yourself.

Prayers on the way to you, Josh and little Aiden.

My daughter had a friend when she was younger that was legally blind, you could tell her eyes were both too small. She had a walking stick to help her but I swear it never slowed her down, I am pretty sure she could still see well enough to play, I never had to assist her when she came over. I run into her mom in the supermarket every now and then and her daughter has since had some surgeory that has helped. She is now a teen and giving her mom hell like any other teen :D

Edit to say...I am really sorry that you and your husband are going through this worrying, there is nothing worse...I never knew what the worry of having kids would be till I had them, get use to it you will worry about 5 million different things through his childhood.

Gosh, I can't tell you how sad I feel for you. But you need to realize that it wasn't your fault. Sometimes things happen for a reason, though we don't comprehend it. There are so many new medical techniques these days. I have a friend whose child is "legally blind" and you'd never know it. Of course there are things she can't do, but her attitude and widom and insight towards other things draws rings around many fully sighted people.
I have some vision and medical problems that, to the day she died, my mother blamed herself for. Of course that's ridiculous. I told her I "doubled up" on other qualities that other people don't have.
You and Alden are in my prayers. I'm sending lots of hugs your way.

I'm so sorry to hear this news...but, with such a strong family surrounding him, his life will be full and blessed and rich, no matter what he can see with his eyes.

Oh sweetheart, I am so sorry to hear this about our darling Aidan. Can only enforce what all his other "Aunties" have said - it is not your fault. As he grows up if his eyes don't function properly his other senses will compensate. With you and his Dad right behind him he will learn to cope and adjust to everything. Try to be positive (hard at the moment I know) but he will be just fine and so will you.

In the meantime we're sending you tons of love and kisses to get you through this xxxxxxxxxxxxxxxxxxxxxxxxxx

Im so sorry that you guys are getting this news.

I have to echo what everyone else is saying. Anything is possible. I really feel deep down that it is to early to expect the worst outcome. Nothing is your fault. The best thing in the world that can happen to anyone is to be born to a loving family. Aidan is truly blessed already to know the love of his mother and father and that is all he really needs to grow up happy.

You guys will be in my prayers. God can do anything.

Jaime, please don't blame yourself. Sometimes these things just happen. You have a beautiful, precious little boy who is a gift from God. As others have said, new medical advances are being made on a daily basis. I will keep you, Aidan, and your husband in my prayers. Feel free to vent anytime. (((((Hugs)))))

(((hugs))) sweetie, I am so sorry. Jen said it best, nothing is 100%. No matter what, he is still such a lucky baby to be in a home filled with so much love.

*HUGS* Please don't blame yourself.

hugs sweetie. Jen hit the nail on the head when she said nothing is 100%. He can still grow up surrounded by loved ones & still participate in many activities.

Even if he is legally blind in only one eye he may still be able to drive. My Aunt is & also considered legally blind in one eye, she has a license & drives just fine.

Oh Jaime. Don't blame yourself hun. You did everything you could to bring Aiden safely and healthy into this world. Somethings are out of your control. Birth defects can happen no matter how good the mom takes care of herself. Even a mom who follows all the rules and is in perfect health can have a baby with birth defects. Just keep on loving that adorable little guy like you and Josh can and he'll grow up just as happy as can be. Who knows maybe by the time he gets old enough to have surgery there will be something to give him sight.


Hugs

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Originally Posted by Lobodeb

Perhaps you can focus on the things that he can do rather than the things he might not be able to do.

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I think this is the most important statement so far! There are many many many blind people in the world that live totally productive happy lives. For some reason it was decided that your family would be dealt this challenge and now it is up to you to overcome it - and I know you will!

Of course, this is all easy for me to say as an outsider and the fact that it's not happening to my baby. I know you will have some rough times as you deal with this, but I believe you will all overcome and will be better people for it. :)

Please Jaime, do not blame this on yourself.... . Aidan is there now, and I am sure that with all the love and care he will get he will grow into a beautiful and great man8 Hugs to you and your hubby!!

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Originally Posted by Sudilar

Aidan is a precious gift, no matter what physical challenges he may have. He has you to guide him and love him. He is blessed and so are you.
Hugs.

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I think this sentiment bears repeating. Keep in mind, we are ALL challenged in some way. Maybe, Aiden's are known right away, where many of us struggle to recognize what are challenges are.

Take it from someone that knows somewhat the meaning of "physically challenged"...life will be what the three of you make it. There is no end to your spirit and courage.

Grieve for a while, but, please adapt, develop a plan, if necessary, so that Aiden never knows for a heartbeat any difference.

love,
Johanna

I really cant say anymore than all the others have said. Please know its not your fault. (((Hugs)))

I'm sorry... First of all, don't blame yourself, it wsn't your fault...

I don't have anything to said that hasn't been said before. I'm sure that, with the love and support of his wonderful mum and dad, Aidan's life will be happy and full of joy... He's already blessed of having such a loving family...

(((((hugs)))))

Thanks for the kind words, everyone. I appreciate you all hearing me out and saying such nice, supportive things. I can finally, finally think about what Aidan may be up against without automatically bursting into tears, so we're taking baby steps but progress is progress. I'll keep you all posted as we find out more, but as the doctor said - it's basically a waiting game until Aidan can tell us what he can and can't see.

And Kay - I'm afraid I haven't been able to put either the onesie or the bib on Aidan yet. You see, he was so small when he was born he couldn't even fit into preemie clothing (3-5 lbs.). The onesie you got him is for 18 mos. so it would absolutely swim on him. I have a feeling he'll be closer to 2 years old before he'll be able to wear it and fill it out. The bib is also big for him - but he should be able to use it in about 3-6 months. When he is able to fit into them, I will take pictures - I promise!