Yesterday was a sad day to be sure. My husband and I have been hoping for good news, any positive progress and a path to follow for my daughter's vision to improve. We've been holding on to hope and putting as positive a front forward to friends and family that we could. We had hope. Yesterday we were told, again, that the situation wasn't good and had to, again, change our expectations for her ultimate visual ability. We're trying to accept that she will be almost blind, if not complely blind. The implications for her life are fairly staggering to think about.
So within all of that, alone in a city just the three of us: my husband, my daughter and me, I asked to be given some space and to not contact us. Last time, when my daughter was admitted to the hospital, I felt like I was smothered in love, caring and concern. I was drowning in emails, text messages and phone calls. I felt obligated to get back to everyone because each person cared enough to reach out to us. I didn't think I could do it again this time.
But it's lonely without support. My husband and I are coping as well as can be expected. We've had conversations with our parents and we're all in shock in a sense, trying to process the implications. My daughter, as always, is happy and unphased other than the bits about the doctor she doesn't like (IVs, being put to sleep, eye drops, long waits without food before procedures, etc.).
This morning my daughter decided she wanted waffles (she ordered pancakes instead when we arrived) and as we were waiting for our food I went to the bathroom. I started crying as I entered the stall and when I came out a petit, old black woman was standing at the sink. She said, "is your daughter going blind?" She had been sitting across from us and had been watching us help our daughter with the menu, crayons, finding her drink on the table, etc.
She hugged me and cried with me and told me she knew of a place that did eye transplants for free. She is going to send me the information, she promised. I thanked her, not telling her the part of my daughter's eyes that was broken wasn't a part that could be transplanted. It was a very touching gesture.
We're coping and thinking about what we need to do next to help my daughter. She's already seeing a play therapist who is helping her as well as my husband and me understand how she's processing and dealing with the change in her vision and all the doctors visits and procedures.
We've gotten the county school system involved (thanks to an early recommendation by my daughter's eye doctor) and her IEP (Individualized Education Plan) is close to complete. She will, at minimum, have help from the specialist in childhood vision from the county two afternoons each week at school. If more needs to be done such as another school, we'll have to address that as the school year progresses.
I'm going to look into singing lessons for her. She simply loves to sing. I think she'd like to have someone who sings with her each week. I'm not sure about the Tae Kwon Do classes I just signed her up for with her brother. If her vision improved, it would be a fun class for her. I may request a refund as we haven't started yet and I'm not sure she'll be able to participate without being frustrated. I'll have to think on that one for a while.
Right now she can watch television shows and movies on the iPad at very close range. She seems to be learning a lot from shows like Super Why and enjoys telling us about it afterwards.
There are going to be a lot of changes. There is a small chance (this is me speaking, not the doctor) that the procedure he may decide to do after our meeting today might improve her vision a little. That's my hope. That is my extreme hope.
The Big Boy Update: My son is really enjoying Tae Kwon Do classes. He wanted to go last night to show Nana and Papa what he's learned. He has the very first beginner white belt, but after doing well in a class they take a piece of colored tape and wrap it around the end of the belt. He got another piece of red tape last night. He was very proud.
The Tiny Girl Chronicles: My daughter loves to sing. She knows she has to be careful not to jump on dad because of his recent hernia surgery. Yesterday she said, "I'm going to sing you a song about your surgery, daddy."
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