Sucker punched

I kind of feel like I've been sucker punched and the wind has been knocked out of me. I thought I would take a look at the roster for the upcoming Rep Soccer season. I knew Anna's name wouldn't be on it, and I know if she gets well, she'll be placed on a team, so I thought I would be fine looking at the list. Boy, was I wrong! Looking at the roster, and not seeing her name on it, truly took my breath away. Seeing all of the names of her friends, and people she has played with for years on the list, and Anna's name missing, feels wrong. I know it can't be helped, and we can't do anything to change it, but it is a sickening feeling. I honestly don't even have words to describe it. Her name should be on that list. She should be jumping up and down excited for another season. She should be celebrating with her teammates. Instead, she is downstairs sleeping, too sick to get out of bed and I am here trying to keep my tears in thinking of what has been lost. Wow. How did we get to this point? To be honest, I am a bit of a mess right now. I keep thinking why? Why did this have to happen? Why did a beautiful girl like Anna have to have such a debilitating illness? Why? I know there are no answers but I have so many questions and today is a day where I am just mad. Mad at the whole situation and mad that this happened to her. Mad that she is not on the team. Mad that she can't run and skip and play like most people her age. Mad that all of this is out of our control and there is absolutely nothing we can do to fix it.

Do not be afraid

I received a call back from the cardiologist the other day. It was not the news that I was hoping for. He doesn't think that IV therapy for Anna will be beneficial. Although I was kind of expecting this response, it's still hard to hear. For me, this was an avenue that I thought might provide Anna a sense of relief. It feels like we are back at square one. When I was speaking with the Doctor on the phone, he was very nice about it all, and very honest. I was explaining how ill Anna had been and how we are frustrated because we don't know what to do for her. Basically, he told us we have a long journey ahead of us and unfortunately, the medical community does not know enough to provide us with any advice. Ahhhh.....so frustrating!!!
On a positive note though, Anna has been feeling pretty good these past few days! She's actually made it to school every day this week!! It's so strange how our outlook on things have changed. Before, we were upset if our child was sick for a few days, now we are celebrating when she's feeling well for a few days.
If you have read some of my previous posts, you may have read that I was hoping for a miracle for April because of soccer tryouts. The miracle hasn't happened yet. Today is the first tryout. So hard. On the way home from school today, Anna mentioned it to me. I didn't bring it up because I know it's a very sensitive subject for her. She wants so badly to be out there with her team. I hate how this illness has taken that away from her. I did talk to the head of the soccer organization and he told me that Anna will have a spot on the rep team but that still doesn't mean she will be able to play. We now have until September for the miracle!
I came across a beautiful passage the other day and I felt like it was meant just for us. It is now something that I look at every day to try and remain clear headed and positive in a situation that can get me down very quickly.
          "Do not be afraid; do not be discouraged, for the Lord your God will be
                                           with you wherever you go"
                       
       

Tryouts

So the email came today. The email that I knew was going to come, but was hoping  wouldn't come for a while. The email saying that rep soccer tryouts are coming up. Usually this email gets me excited for the upcoming season, but this time, I'm just not ready. We need more time. We need more time to try and get Anna well enough to play. More time to give her body rest. More time to build up her confidence. More time to hopefully, miraculously, get rid of dysautonomia. Tryouts are in April. It's coming too fast. I don't want her to get on that field and collapse. I don't want her to get on that field and only last two minutes. I want her to get on that field and show everyone what she's got. Show the world that she is going to fight back and beat this. Go on that field and be like she was a year ago. But I know, deep in my heart, that it's not the same as a year ago.
She had one of her closest friends from her soccer team over the other day. We were standing in the kitchen just talking. Talking about the upcoming season and what their hopes are for it. Talking about who they wanted to be their coach and who they hoped tried out for the team. I loved listening and chiming in. I loved hearing the excitement in Anna's voice. Loved hearing Anna's passion. Loved hearing about their hopes for next season. In the middle of it all, I spoke silently asking God to please let her be well enough to play. Please give her her body back. Please don't take away what she loves.
April will be here before we know it. I'm hoping that a miracle happens before then.