amaya at lake

amaya at lake

Thursday, June 14, 2012

One hundredth day

      I don't have any pictures from today because there really wasn't anything to take pictures of. We got up, ready, went to the chiropractor, then to therapy. But once we checked in they let us know that our therapist for today had called off for the day. They had called our house, but we had already left and missed the call. We checked to see if anyone else had any cancellations so that they could see Amaya, but unfortunately no one did. I hate that Amaya missed her session, especially at this point (since her muscles are so tight and she needs all the therapy she can to stretch her muscles out). I took her to school and she stayed the rest of the day. I got to spend the rest of the afternoon with Lidie; we played with the water table, had lunch together, went to Lake Arrowhead to feed ducks and play on the playground. She swung on the swings for almost twenty minutes and had a blast. It's nice to see her be so content and happy. It's nice having one on one time with her. Having that time with her almost seems a bit easy, because compared to having two girls, a fixator, a wheelchair, or walker and all the craziness that our days can have having time with Lidie alone is almost a breeze. I'm not sure if I would have felt that a few months ago, but I sure do know. That's something that life with a fixator gives you is confidence; once you can handle life with a fixator you can handle most things.
     Josh and Amaya told me today that they thought today was the 100th day post surgery, so I counted it up. They were right. One hundred days ago we were in the hospital, in Amaya's room getting her settled for her first night. That day seems so long ago. A blur. Ugh (I wish you could understand all the emotions that, that ugh has). In the world of teaching the 100th day is always a milestone, because its such a big number and its at a point in the school year where you're past the majority of the school year (only eighty days left). I wish that was also true in the world of fixators. We have about six months left to go (about 180 days). That's just with the fixator on, we still have a few months after it comes off of therapy, follow-ups, etc.. That seems a bit overwhelming and unnerving so I try to not think about it for too long. But, one hundred days ago I couldn't imagine getting to today, one hundred days later, so I have some hope.
     In other news, we signed Amaya up to be a member of PossAbilities (you can google it and find them on facebook), a community program through the LLUMC. Its a free program for people with disabilities (either from birth or injury). It provides many opportunities and programs. One of which is a swimming class that we signed Amaya up for. She's been hesitant and afraid to try swimming with her fixator on, but when we mentioned swimming with other kids and grown ups with different bodies like her (although they may not have PFFD). She was excited for it and we're excited to see her swim. She'll be starting in August for a once a week class. It was a bit odd signing her up; when I had to describe her disability. It's still weird for me to describe her PFFD as a disability. Even though on a cognitive level I know and understand that, that's what it is. On an emotional level its quite different. Describing her PFFD as a disability or a birth defect is strange and emotional for me. I don't want her to be seen or labeled that way. I never think of Amaya as a person with a disability; I see her as powerful, smart, talented, full of potential and drive (not that you aren't when you have a disability). She's my daughter whom I love dearly, just as she is. I don't want the world to judge her or limit her based on her disability. Perhaps that's why the stares bother me so much; because people only see her leg, or her fixator or her shoe lift, or wheelchair or walker. They don't see Amaya or appreciate all that she is. Stares and labels are one dimensional; too limiting to fully grasp all that Amaya is. The majority of the world is ignorant to life with a disability. I wish that when they saw someone with a disability or heard the word disability they would recognize that here is a person who is different in some ways, but more alike than not. Someone who struggles to do things they take for granted. Someone with great strength of character. Someone with great perseverance and who has endured so much. At least that's the case when they look at Amaya. She's a sweet, kind soul.
I remembered this morning (Friday), that I had taken a couple of pictures at the chiropractor's office. The girls were being so sweet and snuggly I couldn't resist taking a picture or two.
Lidie's eyes in this one make me smile so much. 

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