I've really wanted to be alone lately- or more specifically, I haven't wanted to get close to anyone. I have wanted to keep busy and handle tasks and just kind of tread water, I guess.
I want to be quiet.
The past couple of days have been a bit tough. Rowan has regressed a little bit- more seizures, longer seizures- he's groggier and much more irritable. He started a new medication last night- so three for seizures now, one vitamin, one for muscles and Ativan as needed for seizures.
I think we, well I... I can't speak for Steve... got my hopes up that we were making huge strides and that he'd be his normal self again and stay that way with the medications. And I think we can still get there, but it's become so much more real to me that this is going to be a long road full of questions, doctor's visits, medication changes, questions and more questions. Each night I wonder how we can do this every day. I'm tired.
I know I sound pretty negative right now, and I'm sorry for that. Today I feel overwhelmed and scared and so conflicted. On one hand I have the loveliest little girl I could hope for- she's amazingly smart, patient with us, and spunky. Her chipper little voice makes my days and minutes and I adore watching her learn and grow and become her own self.
On the other hand, I have this beautiful little boy who probably won't do all of the things Lily can do. He struggles to stay awake, to have a half hour lately without seizures, and to find noises with his eyes. Last night he was laying on the couch and was pretty fussy. I was moving his arms and legs to try to cheer him up. I put his warm little hands on my face and held them there... and I thought to myself, 'Erin- remember those warm hands. Remember what they feel like and remember that there's so much life in there.' I never want to forget his hands.
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| Cards, letters, angels, and a book- Bright spots that I revisit often. |
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