I don’t have a lot of good news to report about Simone, but I would like to tell you all about some recent developments concerning flooring. As you can see in the photo on the left as well as in some of the videos that we have taken of Simmi, we have been walking and living on concrete for the last six months. Its unnerving to watch her walk around and not know when she will just fall, or lose her balance. Beyond the hardness of concrete, the fact that it is unfinished and has posed a problem for us all these months. We can’t wash it! Its dirty as well as porous. All we can do is sweep it to try and keep it clean. Anyway, I was feeling like I was at the end of my rope, panicky and totally unglued at times, so I put in a request to my friends that I really needed help getting some laminate flooring down. These beautiful sisters of mine started donating boxes of laminate that I had picked out at Lumber Liquidators. I felt blessed beyond measure that they would gift us in this way. Some offered to send money and when they did, I happened to be searching through the materials list on Craigslist when I came across an ad for laminate flooring. I inquired about this particular flooring because it was probably the most beautiful flooring I had ever seen. The girls had sent me $200.00 at that point, but I needed more because he was selling the flooring for $270.00. Forty more dollars came in the mail that day and I contacted him again and asked if he would take $240.00 and he said yes. We were ecstatic. What we didn’t know was that the gentleman that was selling us the laminate flooring clicked our website link for Loving Simone and he read about her. The next day when Dom went to pick up the flooring, he said he wanted to give us the flooring for free. We were absolutely
stunned and in shock. When Dom got home and brought the flooring in, we just sat there staring at each other. Silent is the word that would describe us. Even this morning we just sat there staring at each other still trying to process the generosity of both friends and strangers.
I just wanted to thank my dear friends and Chris for donating the flooring to us. I hope the picture that we posted of Simmi will be one of the last of her standing on nasty concrete. The photo on the right is of the flooring that our friends donated (in the middle). It is from Lumber Liquidators. The flooring on the left was donated by Chris (I hope you don’t mind me putting your name up!) and it is Formica Quintessa Rosario Palisander. The timing of all of this couldn’t have been better either. Yesterday after Simmi took a short nap, she woke up screaming again. She was stuck on her knees, tremoring with a weird glazed over look in her eyes. It took almost three hours for her to snap out of it. Her hands remained clasped during that time or she had her hand in her mouth. Dom brought her into where I was so I could say hi to her and it was as if she was just looking right through me. She was emotionless, blank and just staring. No smile…nothing. We do have concerns about Rett Syndrome, and as she continues to display some of the characteristics of it, we find ourselves holding our breath a lot. It’s in the back of our minds, but not a foremost concern at the moment. She still has very good hand skills, although when she wakes up tremoring, screaming, refusing to walk or stand up, blank and expressionless, we begin to wonder if she is in the beginning of regression. If she is and she begins to lose the ability to walk… crawling or scooting around on concrete floors would be even more of a nightmare.
Today one of the therapists from The School for Blind came to do an assessment of her vision. Simmi enjoyed having her here because Miss Lynn came with lots of shiny toys. Simmi was in her glory wanting to hold the shiny beads, shakers, and other fun things Lynn had in her box. We will be meeting with her again next week for another part of an evaluation.
Below is a video of Simmi and Miss Sharon. Simmi did very well with her, listened and tried to follow directions. She was very proud of herself. This video is kind of long.
Tags: concrete floors, kindness, laminate floors, Rett Syndrome
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