Yesterday I had a friend text me about a gymnastics class for blind children she had heard about. She and I talked via text for a while about a lot of things. She was one of the people I turned to when we began the Individualized Education Plan for my daughter with the public school system. She has a son with Downs Syndrome and has given us good advice as we went through the process.
She asked me last night how I was doing. I’ve been asked this a lot. People know we’ve been going through a life-changing situation with my daughter. We all worry about her and the majority of the conversations we have are about her. But people also have compassion and understand how terribly painful it must be for parents to see their child suffer and to lose hope for a vision of a normal future for their child.
My friend said in our text conversation last night, “grieving the loss of normalcy was very hard for me. I still get very down about it.” That one comment has run through my mind many times since our conversation last night. It’s a succinct way to express what goes on in your head as a parent.
My daughter’s path was one of normalcy. Since my daughter’s vision loss, I think about all the things in both her and our lives that necessarily have to be different. I don’t want to have genius children that grow up to be the presidents (one following the other in office, obviously.) All I want is to have two children who grow up in a boring, normal way like everyone else.
The change in my daughter’s vision robbed us of that normalcy. We are now special. Special was something I wanted to be when I was younger—now all I want is to be normal.
The Big Boy Update: We have an Amazon Echo in our kitchen. You can say out loud requests starting with the word, “Alexa” and the Echo will respond. Alexa sets timers for us, plays music, answers questions via Internet search results and adds items to our shopping list among other things. Alexa is popular in our house. This morning my son said, “It would be good if we could get another Alexa that could make us food. I want her to make me my favorite snack.”
The Tiny Girl Chronicles: My daughter’s eyes have started tracking separately. It’s not all the time, it’s only when she’s looking rolling her left eye up because she seems to be able to see better from that angle on that eye. Hopefully after her surgery next month when her right eye’s lens capsule is opened up and we get a corrective lens on her, we’ll be able to see her use both eyes together consistently.
Fitness Update: I ran close to five miles with my cousin today. I went to her house and we ran in the greenway paths that surround her house. It was a lovely run. We’re planning on running together again next week.
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