Can I just say that I absolutely, 100 percent despise dysautonomia!!! I hate how it rips a persons life apart. I hate how it turns a perfectly healthy, active individual into a person writhing in agony, unable to move, trembling like she's having a seizure and trying to breathe. Dysautonmia is wicked and I wish that I would never have heard this word.
Yesterday was supposed to be a good day. It was Anna's last game of the season and she wanted to play. She had participated in some practices beforehand and knew that her body wouldn't let her play a full game, but was hopeful to get out there for a couple of runs on the field and maybe a kick or two, She wanted to take a season that was full of trials and frustration, and end on a high note. She showed up for the pregame warm-up and did as much as she could. She was worried that if she did the full hour of warm-up, her body would be too fatigued to actually play the game. The game started and eventually Anna was put on the field. I was nervous and excited. I wanted her body to allow her to have a moment of feeling great, a moment of overcoming this, a moment of being a part of a game that she loves. That was not to be. Two minutes of her playing and she was sitting on the sidelines with the team trainer. I was watching like a hawk. Although he has spent a lot of time helping Anna through rough times and I was confident that she was in his care, I was watching, petrified that she was suffering. I watched and begged God to make things ok. That's when I saw him raise his hand to me and call me over. My heart dropped. I knew if he was calling me over, it couldn't be good. I ran across the middle of the field...thank goodness it was half time now! It didn't take me long to get across that field. I dropped to my knees when I saw her and knew she was in rough shape. She was trembling and shaking, Her muscles were spasming and she couldn't catch her breath. She was pale and her hands were ice cold. I tore my jacket off and just laid it over her jerking legs and hands. We needed to get her out of here and fast. They delayed the game as I ran back across the field. I yelled to Matt that he needed to go help carry Anna off and I would pull the vehicle around. We raced to do what we needed to do. I watched as Anna's body is being carried across. They laid her on the concrete, covered her in blankets, until I got the vehicle closer. They carried her to the car, and laid her in the backseat. We sped away not really knowing what to do. We have been told so many times that we don't need to bring her to the hospital because there is nothing that anyone can do for her. Anna was begging us to take her there. My head was fighting with my heart. I wanted to rush her into the ER instantly and make sure that she was ok. Instead, we drove to the hospital so Anna knew we were there. Then we sat. We sat in the Emergency room parking lot waiting for it to pass. These episodes typically last for about twenty minutes. I was waiting and waiting, trying to will it to stop. Anna would go from crying in pain, to completely silent as her body shook with convulsions. Matt stood at one open door of the vehicle, and me at the other. We talked to her and tried to soothe her. Nothing was helping and my frustration and anger was growing. I was mad because I felt like I couldn't take her in to the hospital because the doctors told me there was no point. It's almost like they get mad at me if I take her there. Do they not realize how horrific it is to stand by and do nothing as your child lays there suffering, begging you to take her in to the hospital?? After about 15 minutes in the parking lot, Matt and I both said, enough is enough. She wasn't getting any better and it was going on for too long. Matt went and got a wheelchair so we could get her into the hospital. We sat her in the chair, covered her in a blanket, and walked into the Emergency Room. We went straight to registration. I told the nurse Anna's diagnosis of dysautonomia, and she had never heard of it. It's not her fault, but once again, makes me feel so hopeless. We got through registration, and were left sitting in the waiting room. Anna was obviously in a tremendous amount of pain and truly suffering. She was shaking all over and every few seconds, her hands would clench into a fist and make jerking movements. Then her legs would jerk out and spasm. Every nurse that walked by looked at her and then looked at me with sympathy in their eyes. We weren't waiting for more than a few minutes, and we were brought into the room. Once again, the nurse and Doctor had not heard about dysautonomia. Her episode lasted for almost an hour. An hour of unbelievable pain. An hour watching my beautiful daughter suffer. An hour of wanting to scream at the top of my lungs for some answers.
So this is why I hate this disease. It takes everything from a person. Reality hit yesterday. Anna's body is not capable of playing the game she loves. Her body is not capable of participating in daily activities. Her body is not capable of living the life she wants to live. Dysautonomia has taken that away. A chronic illness that no one understands. An invisible illness that is wreaking havoc on a beautiful girl.