When we started physical therapy on Wednesday the therapist asked Amaya if she wanted to make a goal of reaching 110 degrees. Amaya thought she was at 103 on Monday but once she realized she was at 107 she agreed to 112. Then said, “120!” The therapist and I laughed. The therapist started working with Amaya while she was on her tummy. Amaya easily got to 110 degrees while on her tummy so the therapist said she might be able to get to 115 today. The therapist said that knee bends while on the tummy are difficult “its hard 'cause you're neutral at the hip.” Once she was on her back Amaya did some great knee bends. The therapist excitedly said, “ok this is where we get 115.” Amaya was working hard and was pushing through pain. The therapist asked Amaya what she thought she was at then asked, "Feels like 185?! Amaya laughed and said, "Yeah." Her knee measured at 112 then as they pushed to 113 the therapist asked, "do you need a break?" When Amaya answered, "No" the therapist asked, "if you do, will you ask for it?" Amaya answered honestly, "Probably not." By this point Amaya's knee was at 114 degrees. That was a huge accomplishment (it feels like she keeps hitting new ones each session). The final count of the day was 115 degrees!
The therapist praised Amaya for being so tough and working hard. She let Amaya know that in addition to being tough its also important to ask for breaks. She strongly encouraged Amaya to be honest in sessions and to not push herself to the point where she is in unbearable pain. She ended by saying, "Being tough is great, but not always."
I could tell the session was difficult and painful for Amaya. It's hard to gauge just how painful because Amaya will push through, no matter what. As we walked out I could see a tear escape her eye. Instantly I felt a deep pain in my chest, as a mother (I'm sure any parent would understand) it is absolutely heartbreaking. She cried the entire way to the car and most of the way home; in the way that I've seen her do many times before. Slowly releasing tears while not letting the pain get the best of her. Crying in pain while also knowing that it's part of her reality. It makes comforting her difficult. I know I can't take her pain away, I can't promise it will go away, in fact its the opposite.
This is the most pain Amaya has been in, in a while and it made for a painful evening for her and an emotional night for me. Watching her tear stream down her cheek I knew that that wasn't the time for me to feel my feelings. The priority at that moment was Amaya. Seeing her in pain, stuffing my feelings, taking care of her and getting her settled then allowing myself the time to feel and process my feelings was exhausting. It was painful and tiring. I only share this because I want the other PFFD parents reading this to know they are not alone. This journey, as a parent of a child with PFFD, is at times painful and exhausting. It is also inspiring and wonderful.
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