We went home from the hospital Friday. It's Sunday night and I am sitting back in the ER. Lila is being admitted again. I had a fever all day yesterday and I feel exhausted. My muscles are shaky, my stomach is churning, and I want to bury my head in the sand and let someone else take care of life for a while.
But. I'm the mom. So I'm talking to doctors, nurses, RT's, patient care coordinators and trying to speak clearly and concisely and with respect for their knowledge. I am talking to my chaplain colleagues and supervisors and explaining what is happening and stately quite calmly that yes I am struggling. I am reassuring Lila when she is scared about breathing and being in the hospital. I am talking to Samantha who is feeling so insecure as this world that had gotten steady again is now fragmented. I am trying to work out logistics with Ben about who goes where when. I am trying to stay healthy. I am holding Lila and being strong as they talk about IV's and I see the fear in her eyes. I am polite to the woman from housekeeping who just came in to clean the room, thanking her for her work. I am doing all this and no one sees, no can tell that right now, alone, tears are running down my face and I feel like have no one to lean on. No one who can help with all of this. I am lonely in my struggles. I am fearful and grieving.
Because it is so hard to have a child who is so often sick. A child who needs this type of care. Denver helped tremendously, amazingly. For one thing, we have better tools to diagnose her with and they help the docs here care for her. But what if life is always going to be a struggle to manage Lila's health needs and family life? How do people do this? Really.
I try really hard to see the positive but right now I just can't. I am weary. God, I am weary. I am afraid right now that I won't ever get my energy or my motivation or my life back to where it was a week ago. I feel shattered and hopeless and like I am slowly being drawn back into a small space where the choices are few, the air is stale, and the fear is saturating.
Lila is a trooper. So is Samantha. Their mommy is trying to be.
Kristin, I can't tell you how sorry I am to read this. The only thing I know to dois to keep you all in my prayers (for health, peace and strength) and spread the word for others to do the same.
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