Wednesday, July 29, 2015

But on the other hand...

This is a sequel to my last post, "The Hunch". The fear of the unknown can sometimes be so overwhelming, and long-lasting that it really gets the better of me, and I hate that! I hate it! I am the boss of me, not fear. So after posting that drag of a post, I then suddenly thought, "But what about all of the GREAT things that have happened in the past three years?" Yes, things have been taken  from Lu, but we can't let all of that overshadow the good in her life and that she has accomplished, learned, and experienced.

As I've mentioned many times, Lucy can communicate with us! This is huge considering the symptoms of Rett Syndrome and how hard it tries to trap her in her body.  So even on bad days full of seizures and anxiety, she can still talk to us. She has learned work-arounds for her own body and all that it tries to throw at her so she can still be heard. Here's a couple of awesome things she has said recently:

And then one day she said this which was beyond awesome:

And she's made great friends over the past three years. Just this past Friday her buddies Miles, Isaac, and Chase came over for lunch and swimming and Lu asked me this at breakfast before they came:

This summer she's been doing a lot of swimming with more independence than she's ever had and she loves it! And I love it for her!

Yesterday, after watering her garden and swinging on her swing set she walked this far, from her swing to her wheelchair. She still needs quite a bit of support, but her legs are taking amazing steps forward as we practice and practice each day:

Lu and I work on reading and literacy every day also. She knows all of the things that kindergarteners should know, for the most part. She loves to learn and we do our best to fill her brain with whatever interests her. Right now she and her daddy are reading the children's book series by Stephen and Lucy Hawking about outer space and she loves it! Her and I are working on a collage of birds we've seen at the feeders and she's been in charge of using her special scissors to cut out the pictures. 

Her love of art continues:

She got to be a flower girl in her Aunt Ashlee's wedding:

And we are surrounded by family and friends that love and care for us. It can be hard waiting to see what Rett Syndrome will throw at Lu next, but I need to remind myself to always be on the lookout for what amazing things might also happen next. Who might Lu meet? What might she learn, or say, or do? How might her life, and ours, keep getting better, in spite of Rett Syndrome's persistent efforts to ruin it? I guess we'll see!

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