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Saturday, August 3, 2013


We ventured to the Sandcastles. While there my daughters wheelchair couldn't go through the sand. I explained it was fine, that we will wait until the rest of our family chose their favorites. Well.....a volunteer offered this all terrain wheelchair seen above. It was awesome, we were able to push through like we were on pavement. Our daughter was able to pick Thumbelina as her sandcastle favorite. As our daughter grows, we are noticing limitations but it's not because we or she can't, it's because we don't have the equipment to do so. What's frustrating is usually our limitations is just that - the lack of appropriate equipment to experience. Our daughter's wheelchair is great on extremely smooth surfaces. It definitely doesn't help when we're off road and on our own gravel driveway! Our future will consist of several changes to accommodate our daughter's mobility. I'm starting to think the sooner the better now that she's six years old and approximately forty-five pounds. Even in and out of our bathtub can be challenging. It's physically becoming dangerous for all of us. Thinking about bathtub lifts, and a paved driveway for her wheelchair seems like a huge undertaking. It's amazing on how important a smooth surface is, or a wheelchair accessible the sandcastles, without the equipment we're simply unable to proceed. It's interesting watching and listening to individuals complaining about nothing, while we stood there completely happy to wait for the rest of our family to return from viewing the sandcastles because we couldn't go in until we were offered a different chair. One thing about my daughter is she can be very happy with what life is for her, then other times she can be very frustrated. You know, she should be frustrated. While she sits and every other child is running around, swimming, dancing and playing with each other, she can't. We aren't the family to sit back and have limitations.....neither is our daughter but sometimes it's simply beyond our control. After the sandcastles there was dancing on the beach. daughter and I pushed in with her wheelchair and she danced. She moved her legs, her arms and swayed with every move. For one song, I held her out of her chair where she jumped, danced and laughed requesting more. When we left she was red faced from having so much fun. It was a good evening for her. I wrote a previous post about when we are ready to landscape, we would like to make a wheelchair accessible yard and playground. I fear that it will be years from now. Which raises my questions onto when we can change our bathroom, when will we pave or have a wheelchair accessible home? We do absolutely everything ourselves and thank God our house is finished because when it's just my husband and I, it takes years. Everything will get accomplished, it's just going to take time, and that time moving so fast is what concerns me. There is some days that remind me of not our limitations but the set backs because we don't have the proper equipment. That's where I feel our daughters frustrations and our own. My mother keeps stating that my husband and I can't continue carrying around our daughter, we can't keep lifting her in and out of her bed, the bath tub and our vehicle. "We know" Our frustration is we have to right now.....not until we have a paved path way, a wheelchair ramp, and several different lifts. Change takes time. Interesting how my daughter was drawn to the Thumbelina sandcastle, "Thumbelina" a tiny little girl that conquered all odds then lived happily ever after as the Queen of flowers. You know.....I've heard that fairy tales come true and I believe. For us, and for our daughter with physical challenges, we will, and she will conquer and regardless if we have the equipment or not, we made it to Thumbelina, just like we made it to the Sacred Waterfalls, just like our daughter will walk one day. I tell our children every day, you can do anything with the will, with the provocativeness and the endless drive to do so. It's always a choice. My littlest daughter makes me believe this every day. She's definitely my little Thumbelina......

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