i wake up. i shower. i walk to the hospital. i listen to the doctors while they round on my daughter. most days i participate with thoughts and opinions. maybe they like me, maybe they don't, i'm not sure i care either way. i get tired of their descriptions some days. 'shilo. four month old. trisomy 21. admitted due to being postivie for hmv and in respiratory distress...' it goes on for five minutes or more. they are doing their job. i wish they would let me present her. i don't have to continually look down at a paper to tell you her vent settings, her meds, and her doses. but instead i interject when they fumble around and can't find something. i would like it if they added things like, 'shilo can smile large full face smiles when she is well. shilo loves her sister. shilo loves to be held on her mama's shoulder and lightly patted on the back.' but i know these things don't feel important to them, only to me.
so after rounds i sit here all day. i talk to shilo sometimes, rub her head, sing her songs, and pray for her. and then i go back to my chair and sit. i watch her chest rise and fall rhythmically, and listen to the beeping that indicate her heart rate and oxygen saturation. for about fifteen hours a day ( minus going to the bathroom and eating) i am here with her.
and at night, i walk downstairs and get a ride back to the rmh. the guilt sets in before i step off the elevator that i'm leaving her for the night. yes, she's sedated. yes, i 'need to take care of myself,' but it doesn't change how horrible it feels to have to leave her every day. sunday nights are particularly hard because i go back to the room to find hints of jason and abigail having been here all weekend. and i often lay down and cry because i miss them, and shilo, and i feel so alone at that moment.
when living in a hospital with your child, it's easy to go one of two ways. some people think they have the worst possible situation and sit around feeling sorry for themselves. other people know that there are lots of children here with worse things going on and so they refuse to acknowledge that being here is hard. but the truth lies somewhere in the middle. it's fine for me to admit that this sucks, and it's hard. i miss the other half of my family, my friends, my house, my bed, my life back home. it's also good for me to know that there are tons of kiddos around me who aren't leaving this place alive. yes, we have been here for a while, and yes we will continue to be here for a while longer, but we will get to go home. and life will eventually return to our normal routine.
i would encourage you though, if you have a friend, a relative, someone you go to church with, or someone you barely know even, who has a child in the hospital, that your visits, your calls, your meals, your prayers, your gifts, will (and do) make a huge difference. these are the things that have helped me through each day, and i know this is true for the other families i have talked to as well.