For the past year, Hannah has had strabismus (her eyes turned inward). We see it in all her pictures, and I got used to looking into the beautiful brown eyes and seeing them crossed, but she still would be able to gaze back into my eyes. Classic Gaucher symptom that you just eventually learn to overlook and assume as normal.
Hannah and I would cuddle for hours and just look at each other. We always said that for a nonverbal child, she is incredible expressive and you know what she is feeling because of her eyes.
That is completely gone now. All of it.
The strabismus is gone. Not even a sign of it anymore. Hannah’s eyes are now both straight ahead in the middle. She can’t move them left to right anymore or even up and down. The nurses say they still react to light, but what does that really mean in terms of what is going on?
We also wonder if she can still see us. Could she have lost part of her vision or even all of it?
Even if I put my face strategically right in front of hers so she can make eye contact, it just doesn’t happen. She has the actions of how a blind person uses their eyes, but whether or not that is the case, we just don’t know. But then there are those rare times where we will lay on her side and let her watch her iPad (Wiggles or Elmo) for about 5 to 10 minutes (before it is obvious she isn’t interested) – but unlike two weeks ago, she really doesn’t seem to pay attention to the screen and just seems to listen to it for a few minutes.
Could one of the meds be causing this? Is it progression of her disease? Why two weeks ago, even in the hospice, she was able to make eye contact with us but now it is almost if she looks right through us, never making that connection. I think it is time to send off an email to her NIH pediatrician and see if she has any insight.
I feel like my only way of having two-way communication with my baby girl is gone. We couldn’t have conversations with words or signs. Losing that bond with her now, not being able to have her really see in my eyes how much I love her and how much I hurt for her…just so mean. This disease is so damn mean and cruel.
Gauchers Disease is very cruel, the pain and suffering these angels feel and go through is just so inhumane. Praying for comfort andpeace in your hearts.
Carrie, I’m so sorry about this new development and hope it’s temporary. Remember, Hannah can feel your love through your touch also. You know her best and will find a way to reach her…. ((hugs))
So upset for you! I know how you cherish those gazes. Remember though, even if she can’t see you, she hears you, feels you, smells you. She knows that her loving Mommy and Daddy are there.
Jobyna is legally blind, so I know what you mean. The longing for eye contact is sometimes unbearable.
But me and my nurse had a very special experience the other day. Jobyna was hooked up to her o2and heart monitor. When I layer down next to her and hugged her, we saw her heart beat go up! We were touched to see it and very encouraging to know that my blind and nonverbal child feels perfectly!
My heart aches for you Carrie. I wish so badly that these diseases didn’t exist.