amaya at lake

amaya at lake

Thursday, September 15, 2011


     After my last talk with Amaya (see previous post) she asked if she could look at other kids blogs. I found several for us to look at together. Some of children, some adults, some are younger than her, some older, some more severe, some not. But each has a common journey. We looked at each blog and gained inspiration, comfort, and friends. Amaya would look on with great compassion and empathy for each child. She asked how many surgeries they had had, how old they were, what else they would need to do. It was nice to see her worries be eased, questions answered and to see others just like her.
     I am so thankful to the parents who create and update their blogs. They have given me helpful information, hope, comforted me, and guideded me. I frequently read and reread these blogs. They make this journey a little bit easier, by giving me the comfort and support that only someone who truly knows what your going thru can give. So again I say, thank you. Thank you for your time, your honesty, your advice, and your willingness to help. I can only hope that my blog does the same for someone else. It certainly serves as a therapeutic release for me, so thank you for reading these thoughts, vents, rants and words.

At bedtime the other night

     As I laid In bed rubbing Amaya's leg and singing, I started to rub her other leg. She asked me "Mom, why are you rubbing my right leg?" "Because I love both your legs," I said. "Can you rub my left leg instead?" "Sure" I said, "Why?" She answered with "because it's my short leg and needs lots of love." "Of course" I said and continued to rub her leg. A few minutes later she sat up and said "Mom, I don't think I'm ready for my next surgery. I think we need to wait until November,19. I'll be ready by then. Or maybe when I'm six and a half, definitely by then." I reminded her that it's okay to be scared. But, inside I'm sad to know that she worries about this so often. I wish I can take her cares and worries away, but I can't. I can't even take my own away.
     After a few minutes of comforting her, she said "Mom I'm so lucky, I only have to have two surgeries." I'm glad that even though she is dealing with her own fears, she is able to keep some perspective and remember that she is not the only one dealing with this. And her empathy for other kids is heartwarming.
     I reassured her that her surgery won't happen until she's six and a half, that she can do this, she will be okay, and we will be here to help her. She started to list all the people that would help her; her parents, family, friends, doctor, teacher, classmates and dance teacher. I'm so thankful for all these people whom she can count on, thank you all.

Monday, September 12, 2011


     Today was Amaya's second ballet class. After the first class her teacher pulled me aside to talk. She showed me how she taught Amaya to stand. She had her shift her hips forward so that her hips would be level. When she's in ballet shoes, without a lift, her left leg is shorter than her right one and doesn't touch the floor in the same way as the other. That's the same issue we have when she tries to wear any other slip on shoes. That's why I always push for her to be in her shoes with a lift. Her teacher's suggestion would help keep her hips and back aligned while she's in her ballet shoes or any other flat shoes.
      I was touched by her teachers kindness and willingness to help. I appreciate how she acknowledged it and dealt with it in a tactful, kind and professional way. It's been nice to see Amaya meet new girls who live in our area, to try something new, and to push herself. During ballet Amaya does a lot of exercises, stretches and balance work that is similar to what she did during physical therapy. She's also going to be performing in the Nutcracker this year as a gingerbread. In a few weeks, in addition to her weekly class, she'll also have a weekly practice. Although it'll be busy for a couple of months it's a nice distraction before the surgery. And this will be one more thing that she CAN do. It's so important for me that she and others believe that she CAN do anything.

Tuesday, September 6, 2011

Bedtime routine

     Over the last couple of weeks we've made a minor adjustment to our bedtime routine. I usually lay next to Amaya and rub her head and sing until she falls asleep. A few weeks ago Amaya asked if instead of rubbing her head if I would rub her left leg and scars. I was kind of surprised when she asked me to do it. I wondered "do I not rub it often? Or enough?" I rubbed it and have been ever since. I try to not only rub it at bedtime, but also during the day. It's such a sweet little leg.
     As I rub it I realize that sometimes I've been a bit hesitant to rub it. I was afraid to hurt it or make it uncomfortable for her. Her leg was sore after her surgery in January and I tried to not bother it. It's so nice to be able to rub it. I try to take advantage of every chance I get to rub her leg, because I realize that my time to do so is limited. In about six months she'll have her lengthening surgery and have a fixator on for ten months. I'm not sure if I'll be able to rub it during that time. So I'm going to take advantage of it while I can.
     Speaking of scars, I'm always amazed at how big her scars are. She has one on her upper thigh that's about four inches long and then one that starts above the knee goes over it and makes an "s" shape. That one is about eight inches long (these are from the super knee procedure she had done in January). They look so big on her leg, (she's only about four feet tall). I'm amazed at what she's endured, overcome and survived. She's amazing.
     Another great addition to our bedtime routine; after we say "I love you" she responds with "and you love my little leg." "I do, very much," I say. Then I just smile and hold in my tears.