Faith is sick. She’s got a cold. But with Faith a cold is never just a cold. A virus of almost any kind sends us to the hospital, but this time we seem to be doing a better job managing her health at home. Now I am constantly second guessing my decision to take her in, but we’ve decided for now we will continue to do everything we can to keep her little body stable at home. It’s lots of fluids running through her feeding tube and constantly monitoring her output from her colostomy bag. It’s a numbers game, in verses out. Right now the numbers look okay.
This evening she looks at me while I am cleaning her feeding tube site and says, “Mom, I am ready.” My response is quick, because last night she thought we needed to head in to the hospital, and we did just fine. I told her we were going to stick it out. That if we could get past our first virus without an admission it would be such a huge accomplishment for both of us! She sat up grabbed my hand and smiled. “Mom, I’m not talking about going to Mott. I’m talking about when Jesus comes for me, I’m ready.” My response was quick, and not so loving…YOU are not going anywhere.
As I tried to stand up to leave the room I felt like someone had tackled me from behind and knocked the breath out of me. She called after me as I left the room, “it’s just important that you know mom, I am ready.” I went into the bathroom and started thinking as fast as I could about something besides Faiths proclamation. Cabrera just won MVP…so exciting, well it was, but suddenly the MVP that I’ve been anticipating for a couple of months now, is not able to distract me from this thought. WHY is Faith even thinking about Jesus coming for her…why.
She’s asked a few times, when she will know when it is her time to be with Jesus. Then she had this horrible infection in her blood, she was terribly sick. After that infection she let me know, that it wasn’t her time yet, and when it was Jesus would be back for her. I hated every single word of that conversation. I would so rather be completely naive to that fact that my daughter at six years old is facing mortality straight in the face. Maybe that makes me weak, but she’s my baby, and these thoughts are always in the back of my mind. She faces it, then minutes later is doing gymnastics on our living room floor.
The reality is we are now surrounded by a community of sick kids. She has a friend that is very close to dying. She asks almost every morning if there is bad news…I know exactly what she’s referring to. So it shouldn’t come as surprise that she’s thinking about death. But it doesn’t get any easier to handle. Sometimes I feel like the only people who understand me are the other moms that are dealing with a sick kid. They understand. They understand that sometimes it takes everything you’ve got just to care for your child. They understand that stress isn’t about getting all your Christmas shopping done, it’s wondering how you’ll handle Christmas at all. They understand that you change. That as much as you want to be the sports loving, wine drinking, bonfire throwing, fun mom, you’re not anymore. Suddenly MVP celebrations are ended with thoughts of your daughter thinking about death and assuring her mom that she’s okay with it.
We’ve changed. But if you would ever believe this I believe we’ve changed for the better. Yes, I miss my easy life. I miss sleeping for more than 3 hours at a time. I miss working, and I miss not worrying about every check I write. I miss bonfires, and wine. But what I really miss is having crazy dreams for my baby girl. You know, when you have a child you want them do it all. Now, I dream of her being able to go to school for a whole day or staying out of the hospital for six months. I miss the crazy dreams, the you can do anything you want Faith, dreams.
So how, have we been changed for the better. Dealing with all of this, how could I be thankful? I understand that life is a gift. I understand that we don’t decide when that gift will be taken from us. We live so differently. I am thankful for it all. And so are they. They are not your typical six & nine-year old children. They understand that and they love each other, so very much. And they love me, more than I ever imagined I would be loved. We’ve survived so much together, and we are tough. Yeah, so maybe Faith is the toughest of us all, and maybe someday, I’ll have the faith she does. For now, I’m just holding her tight, and reminding her, the only place she needs to be ready to go to is school. Hopefully, for a full day.