Today we took Amalea to see a specialist for her eye and he confirmed what I most feared...she has pretty much no vision in her left and eye and there is nothing that can be done to correct it. Glasses or a contact will not help at this point because it is a problem with her nerve connecting - it doesn't connect. She sees light and dark, but that is about it.
My beautiful, spunky, joyful little girl cannot see out of one eye. This breaks my heart. Amalea is a strong kid and I know all that she has been through in her two short years has made her even stronger.
The doctor does want her to wear glasses for protection. If something were to happen to her right eye (the "good" one) she could lose all vision. So, now we take on the task of getting her to wear glasses all the time - for the rest of her life. Contacts will never be an option, laser surgery will never be an option. Her glasses are to protect her eye, not to treat a vision problem.
As I sat at the doctors today I had so many memories playing through my mind of the over two years of dealing with this.
I remember taking her in for her two week appointment and the doctor noticing the problem.
I remember being told we needed to do a brain scan because it was possible she had a brain tumor.
I remember countless times of holding my screaming baby down with force so she could be examined.
I remember not being able to feed her as she cried out in hunger before her surgery at just 6 weeks of age, having to deny her the very thing she needed most.
I remember seeing her after surgery, all bandaged and swollen and yellow.
I remember fighting with her to wear a patch until she would give up and fall asleep.
I remember getting her glasses not too long ago because we thought they might help her see better.
This journey has already been long, but it is far from over. Amalea will wear glasses and she has a lazy eye. It is a cruel world out there - I work with kids, I know how mean they can be - and I will send my baby girl out into it looking "different" from everyone else. As a mom, this is an incredibly scary feeling.
Thoughts along my journey
3 comments:
Oh, Robin. I had no idea.
This breaks my heart, just a little, for sweet little Amalea.
This past Sunday at Evergreen, I was so taken by Amalea, her gentle nature, and just how good she is with other kids. I barely even know her, but I can already tell Amalea is such an amazing little girl.
This must be hard news for you guys to digest. I'm sure people will remind you that it could be worse - and it always could be worse - but that doesn't change how this news must feel.
If there's any way Mike or I can be of help, please let us know. You guys are in our thoughts and prayers.
MM
My little Ami! Definitely praying and even though I don't know what you guys are going through, I'm here!
So good to talk to you today. My heart broke for you as I read through your memories. I hate holding Seth down, screaming, just for a regular check-up at the doctor. I can't imagine how hard all of those things you've had to do have been. YOU are AMAZING. I love you.
Post a Comment