Well today was kind of a rough day. As we were getting ready to go Amaya was stalling and not putting her shoes on. After a few reminders she finally went over, grabbed her shoes, put on the right one then began to cry. She quickly became overcome with emotion and tears. She let out some of her feelings, frustrations and fears. Some for the very first time.
She began crying and fell to the floor in a fetal position and rocked. I watched her and tried so hard to keep it together(this took every ounce of self control and strength that I had). She began to say ..."I don't want to wear a lift. I'm never wearing one again. I just want two flat shoes. Lots of shoes, like everybody else. I don't want a shorter leg. I don't like having a shorter leg. Why do I have to have one? I just want to be like everybody else! I'm scared to have another surgery. I don't want another surgery, one was enough. Why can't I just have one?" I sat next to her, cried with her,listened, and rubber her leg. I began to explain to her that nobody is "just like everybody else," we all have things that make us unique. I explained that even though wearing a lift can be a pain, so is a retainer, or glasses, or hearing aide or being in a wheelchair. I reminded her that other people struggle with other stuff that they don't necessarily enjoy doing. I also reminded her that it could be so much worse. Not only could she have another more serious disease, but her PFFD could be more severe(she has one of the mildest cases). I let her know that other kids with PFFD have also had to go thru what she's going thru, that some have had more surgeries, many more. And that in the scheme of things two isn't really all that bad. I told her how the first surgeon we met with when she was only a few months old recommended four surgeries and that we were so lucky to have Dr. Nelson who could correct it in two. I also told her that it was okay to be frustrated, and upset and not want a shorter leg(this seemed to allow her to relax, almost like it gave her permission to be feeling what she was feeling). I admitted that I didn't want her to have a short leg (even though I love and accept her just as she is), or to have to deal with any of this. I reminded her that she isn't in this alone. Josh, Lidie and I are here to help her every day for the rest of her life. We're going to help her get thru this surgery and every other challenge that comes her way (she smiled).
During all of this, Lidie sat so sweetly next to Amaya, rubbing her back and singing Born This Way. I'm amazed by the empathy and compassion of my two and a half year old.
After a few minutes Amaya said, "You're right mom, two surgeries are better than four. I'll have my other surgery. I love you mom." This was followed by a hug then she calmly put her shoes on and was ready to go. Just as quickly as it came, it was done.
I felt so sad and helpless. It was so hard to see her this way. She's never once said that she didn't like her leg or that was shorter. She's never once questioned why she had PFFD. Maybe its because as she gets older she's able to think on a different level, or wonder, or maybe she's more aware of the world around her. I just don't know. I can't imagine what her little almost six year old mind must think and feel. Today I got a glimpse of it. I was so glad that she was able to let it out and not hold it all in. I'm amazed by her ability to speak so honestly and to clearly express what she felt and thought.
I was so glad that after her venting was over she was able to accept things and move forward. She's just amazing.
I don't think others realize that when people(and their families) have a disability, it's something that they deal with on a daily basis. It's hard, all we can do is offer love, help and support.