I feel like a crazy person. The days all feel so normal and lovely and completely nuts all at the same time. I’ve really been struggling this week. I am so completely worn out from the break. It is depressing that the care that Claire requires depletes Jared and I if we have no help for two, four day weekends in a row.
I see people talking about what they are doing to make this a great year and I’m over hear like, “I’m really going to try to keep my head above water, or at least see if I can tread water or maybe just try to not drown.”
But I’m trying. I painted a door in an effort to do something I enjoy. I’m trying to focus on building Rettland Foundation as a way of using my pain to help others. I’m trying to eat healthy and drink water and stuff but still, I’m tired and the funniest part, I wonder why.
I know why, but for some reason I am always surprised at just how depleted I am. Then on our way home from physical therapy (because most kids go to PT after school, right?) I tell Chloe that we can’t go shopping after school tomorrow because we are taking Claire to a cardiologist. As she takes me through the typical run of multiple questions I paused to answer when she got to, “Will Claire die if her heart stops?” “If Claire dies, how will it work with me being the only kid in the family?”
And there it is. This is the normal, daily conversation. Yesterday it was centered around how Chloe doesn’t enjoy the sight of Claire purple and how she is excited for when sissy doesn’t have any more seizures.
I don’t know how else to put it out there that this is crazy. One minute I’m beaming with pride as Claire walks and sits so well, higher quality movement than we’ve seen in years. Then I’m discussing death and holding the oxygen on Claire’s face as I wait for her brain to let go and for her to gasp for air.
The weirdest part is that in all this, I feel really, really tired but also fine. I don’t know what that means. I’m pretty sure I haven’t reached acceptance but I have learned to live in it. It’s bizarre. I won’t babble on any more but if you see me walking around with a happy, blank look on my face as I smile and look at the sun on the trees, now you know why.