Lucy’s vision is declining rapidly.
Sometimes I roll with this realization as it inches more fully into view. I find things to be grateful for and I cherish what vision she still has. I feel like I need to be strong for her and everyone else. But I have been a little bit of an emotional basket-case lately. School work is becoming increasingly difficult. She knows how to do it, but it just takes her so long. She can’t see the words on worksheets and quizzes, but acts like she does and claims she does not need help. One thing her Braille teacher said in our last IEP meeting really rang so true to me and Dave: she just has such a deep hatred for her syndrome that it makes her repel anything related to it. She tries to keep a wide girth from those who may offer her special help. It just makes my heart ache for her because she wants so much to do well, but she just can’t seem to let anyone in to help.
Junior high isn’t the easiest of times for anyone, let alone someone who is suffering to see. She is so social but her friends are passing her up by leaps and bounds. They have babysitting jobs and their own cell phones and soccer tournaments and cheer tryouts, a fully different world from Lucy in so many ways. Oh, they are so good to her, but it is so deflating to hear her call and text (on my phone) friend after friend, each one with a different conflict.
This last weekend my heart was wrapped around hers over and over again. It was a rough one. She came home so sad after getting some horrible grades on some tests she studied so hard for. After she exhausted her list of friends to invite over and no one was available, the two of us worked on putting together her birthday Lego set. I had wondered why she hadn’t finished that project yet since most of the time when she gets Legos she gets right to work. As we worked together I realized she can’t see the instructions any more. Nor can she tell the colors or shapes of the ones she needs to find in those piles. That thing that she has loved for so long and she is losing grasp on being able to do it. Tried to tuck that down so I didn’t break down and bawl, and instead I took her out to dinner and read her book club book for a long time (Dave was out of town so she was a great date).
She gave me the biggest impromptu hug when we finished and snuggled for a minute. Which is like gold when it comes to Lucy.
The rest of the weekend was filled with the same things. Little things like how she accidentally sprayed cooking spray in her hair when she was trying so earnestly to help me with dinner and not being able to see her math paper right in front of her to bigger things. Too many things to go into in a blog post. Things that make the future seem dark and ominous. I had my fair-share of tears over it all with Dave later. And Lucy shed her own.
This is a hard thing.
Sometimes a seemingly impossible thing.
But I know she can do it. We can do it. And we’re learning every day with nudges and prompts as to how.
I love this painting by Caitlin Connolly:
It is called “She Became Herself With Tears.”
And that just speaks to me right now.
Can we become ourselves without them? Maybe not. Maybe that: those stumbling blocks and sorrows, those “seemingly impossibles”…our “tears,” are what makes all the “becoming” happen.
I hope we are learning the things we are supposed to. And that those tears will help make us stronger as we keep soldiering on to find new ways. New alternatives. New hope.
I do know one thing for sure: I am the luckiest to be her mother. Through the tears and the smiles, she makes life beautiful.