I used to love being alone. Not all the time, because I am a people person, but I loved going running and I think half the reason I would run so far was because I loved my alone time so much. Now, I dread my alone time. There really isn’t all that much of it, but when I have it, it pretty much sucks. Today, I realized that it’s when I am alone that I really can think about what’s going on in my life. And for the first time, in my life, I have no direction. I have no idea where I am headed. I have no plan, and that is a very scary thing. I feel like I am in control of nothing, and I have no clue when that will change.
Faith has been out of the hospital for two weeks now, but her stoma from her colostomy is infected and she’s had fevers three times this week. She woke up this morning in pain and said, Mom, When am I going to be better? I can’t answer her. I have no idea. I am fairly certain her doctors have no idea.
Our dining room is now a medical procedure room, where I stick a red rubber tube into her colon and wash it out, hoping that the infection that makes her feel so bad will get better. We have to change her ostomy bag in there and treat the yeast infection and nasty infection around her stoma. Her last stoma prolapsed, meaning part of her colon that was supposed to stay in her body was now coming out of her body…so they cut that part of her colon out and made a new one…now, the new one, is also starting to prolapse. The ramifications of that, I can’t even consider at this time. We take care of her Mickey button, which is where she receives her tube feeds…She has medicines and other things we infuse thru her tube every two hours or so.
Her doctors seem to agree to disagree on her treatment. One says remove her entire colon, one says, keep as much as you can, one said her small bowel is messed up too. The bottom line they have no clue. They have no plan. That is what happens when you get a disease that is diagnosed once a year in the USA. Everyone says…go here, go there…doesnt matter. No one is treating her illness successfully right now, Mott is where she is comfortable.
I’ve done a great job, she has no clue how scared I am. Her brother may, he isn’t sleeping well, and asks me all the time when we are headed back to the hospital. I’ve convinced her that Kindergarten is not something she wants to do, that a ballet school is way more exciting. Even thou for some reason this is one of the hardest things for me, its such a monumental thing…starting kintergarten. I already play over and over in my head, I didn’t go to kindergarten I was too sick…I just am sad that she’s missing out. It’s just not fair. She would love it. And everyone wants an explaination…why don’t you try it…I assure you, no one has thought more about this than me, and I can’t talk to you about why. Because when I think about it I can’t breathe, so talking about it is out of the question.
So, My alone thoughts are way worse than any of this stuff. Our life is hard right now, and I seem to just feel happy for moments at a time. But those moments, I am so grateful for.
A friend, seriously offering to marry me so I have health insurance, an I-pad to make our hospital stays so much easier. A tweet from a friend that cares so much about my daughter, he thinks about it in the middle of a very busy life. A near stranger who tracked down my daughters last name to send us food from whole foods so we didn’t have to eat hospital food. Friends who continue to try to organize a fundraiser, for us, even thou my pride stands firmly in their way. A niece who can make my Faith forget she’s sick. Friends, who have come to clean my house that is totally overrun…An Aunt who’s there in place of my dad. My mom who takes over as mommy for Will the minute we get admitted again. My son who loves me no less even though as he just said this summer has been the worst, And someone to hold my hand, just to hold it.
I’m grateful for these moments, the moments that I forget I am sad. More than anything, I am a grateful for her, that god choose me to be her mom, because, really she’s amazing. And when I think of how amazing she is…those are the moments Im happiest.