Here's the big girl in her first nightgown. She wasn't able to wear regular nightclothes because of the hip brace, but since she's on vacation from that, she got to pick out her own big girl pj's. And she does think she is hot stuff in them! (funny how marketing works...this child has never seen the show "Dora", but certainly knows who Dora is!)
We're still researching the hip surgery, but have gone ahead and scheduled it for the beginning of November so that we don't miss the opportunity to have it done when we want it (after trick or treating, but before Christmas). It truly breaks our hearts to see how strong she has gotten and how independent she now is with her walking...and to know that this surgery would take all of that away from her for many months.
I've been doing a lot of reading and thought i'd share two books. The first is called "Reflections from a Different Journey" and it is writings by adults with disabilities. They reflect on their childhoods, and things their parents did well or that they wish they had done. It's easy (well, not really!) to read, just short essays.
The second has become my favorite because it really hits home. It's called "You will Dream New Dreams" and is a bunch of parents writing about having children with disabilities. I'm so glad that Sharon (and us!) are living in this time when there is so much more tolerance and acceptance, but it still is a tough road, and one that is very different than for typical children. One of the essays sums it up (called "the Ride") It describes being a parent as being on an amusement park ride: "For parents with typical children, the peaks, hills, and curves in the track are balanced with lots of straightaways. These parents spend more time at the top of the hills, relaxing and looking over the amusement park. They have time to enjoy successes before racing down the incline and to the end of the track. They can climb off the ride at the end. There are more hills on our tracks. The peaks seem higher and harder to reach, the inclines steeper, the curves sharper, the straightaways less frequent. It takes more energy to negotiate each curve and climb up the next hill before reaching a straighaway that allows us to coast for a little while. Since there is no visible end to this ride, our fuel supply dimishes and the motor often splutters."
I have to remind myself that we ARE on a different ride and that i can't expect the same from myself or Sharon as friends and family experience. But boy, talk about being able to truly appreciate every "straightaway" and success!!! To work so hard for something and see it accomplished is amazing, and is something Sharon does almost daily as she works to do things that everyone else takes for granted.
Anyway, i thought that some of you might be interested in reading those books for yourselves. I highly recommend them for anyone who knows or is related to someone with a disability...they really give some good insights and answers.
In other news, Sharon is still doing well with school! This is the start of her third week and (I can't believe it!) there haven't been any tears. She is hesitant when we get to the classroom each morning, but then enters willingly and is enthralled by her classmates. When i pick her up she is playing and happy. So great!!!! The hardest part is outside play, and that is just going to take time for her to get comfortable with the uneven ground and equipment. The teachers are attentive to her and i feel that she is in good hands. I'm VERY glad she isn't in school 5 days a week! I know that was the right decision. So now she and I just stay VERY busy keeping up with 7 therapies a week....
Have a great week!
Peace
Jaye, RJ, and Sharon I.
