It’s been way too long since I’ve written anything. Faith loves reading my blog and asks me all the time to please write more. She said she thinks it helps her, she reads some of them over and over and often asks me to read them to her. Sometimes she cries when she reads them, and she often laughs. She gets me. She understand my humor.
I wish I could say that I’ve neglected the blog because Faith is doing so much better. But unfortunately that’s not the case. Tonight I ran into one of her student doctors who hasn’t seen Faith for a few years. She asked all about how she was doing….I realized I didn’t have anything exciting to tell her about Faith and her health. Which lead me to wonder, if I just get sick of telling the same story.
It’s like when someone asks me how she’s doing. I usually say, okay. What I mean by okay is okay in her world. But not anywhere close to okay in a healthy child’s world.
This week we are dealing with systematic yeast. Yeast has always been one of those things that makes me hold my breath. She was five when she became septic with a yeast infection in her blood and I’ve never been able to shake the sick feeling I get when I see yeast on her body.
We’ve also started some new treatments for her disease. Which she absolutely hates. I do one of the treatments every night at 3am. But one of them I can only do while she’s awake and it honestly sucks. Tonight she cried a lot about it.
Of course I act very matter of fact about it, it has to happen, it doesn’t matter if it makes you sad, when silently it’s ripping my heart out to see her so sad about it.
I repeat to her our mantra….none of this seems fair, but there’s a greater plan we just don’t understand. We believe that. I don’t believe for a second that any child suffers in vein. There are times when I am crazy disgusted and angry as hell for the cards she’s been dealt. Today I sat down in the middle of Lowes and cried. A sweet old man thought I was sad that the generators were sold out, and I just nodded my head and gave him a smile.
When I am alone I replay our conversations we have and sometimes it hits me in strange places….today it was her telling me that she can’t be in sports because she sometimes feels like she can’t even walk. Boom. Smacked me in the face as I walked into Lowes. So I sit down on some box and I think of how much fun I had playing sports in school.
Then my friend Sherry posted all these pictures on Facebook of us in Middle School, not far off for Faith. Our friend commented on what a great childhood we all had and she was so right….but all I can think about now is Faith not having the childhood I wanted her to. And that she doesn’t even know what she’s missing and that makes me breathless.
Receiently, we made the decision to sell the home I built with my dad before he died. Sad. But no where near the heartbreak you would think it would be. Why…..because in the middle of all this madness I’ve gained new perspective.
I am grateful to be able to take care of my daughter. Do you know there are children with diseases like Faiths who live in the hospital. I understand why. But can you imagine how much more of a loss it would be to have your home be a hospital.
I want to give Faith the opportunity to experience as much life as she can. Because experiences make memories. She’s not going to play basketball and have sleepovers at her friends houses but she will make memories. And who says her memories will be any less memorable than mine were?
I pray every morning that the good outweighs the bad. That she wants to continue to fight to be healthy. That she doesn’t decide she’s had enough. And then after her 3am treatment I lay in bed next to her and hold her hand.
I love to feel her slow and steady pulse….because that means she’s not in pain. I love to feel her dry and cool hand….because it tells me she doesn’t have a fever. I hold her hand every so slightly so I don’t wake her up… Because it comforts me. It tells me she’s okay. That we are going to be okay. And then I kiss the back of her hand and bless her with the sign of the cross….as I whisper he chose you, my love, you will move mountains.
And I really believe she will.