november 2nd, 2012, we told reese we loved her. we gave her kisses. the nurse warned us that her pre-meds would wear off soon, so to say we'll see her later and go quickly. we turned around, walked down the hall towards the elevators, and collapsed into each other's arms. we collected ourselves as best as we could and headed to the OR waiting room. first up was waiting for the general surgeon to come tell us how him putting an external central line went. they took us to a room and his sweet face, who we'd signed paperwork with before, explaining the risks of that tiny part of her hours long brain surgery, told us that all went well.
today, that same surgeon, who i havent seen at any point in between, took her port out. we sat in a similar small room as he said all went perfectly, to see a doctor in a month to make sure it healed properly, he shook my hand at the end of a journey - instead of shaking my hand to welcome me to a nightmare.
when we were figuring out a date for port removal - the first available looked like halloween. i gave excuses about that sort of being a damper on the whole fun evening. which is true. but in reality, it was just too much for me. i asked him to look at other surgeons' schedules and he called me back with today's date.
im sitting in bed right now with a new reese. one that doesn't have to go to the ER for a 100 fever. who i give tylenol to, like the other kids. she demanded dance tonight. there was not one question on if she would just sit w me while miller took their class. and when watching her tonight, it was like she had no surgery today at all. she pulled down the top of her leotard for older girls that she looks up to and said "see? its out."
i don't forget that i do not know what the future holds. i dont pretend to think that we still dont have battles ahead of us. i am hopeful for reese's future. i look at her and am amazed. we talk about kindergarten and what services we'll be looking for, what we will want her IEP to say, what classes we want to be inclusive, if she'll get any spec ed or not. i can't picture her with longer hair, but every millimeter it grows is one more chunk of time that spaces me out from the bald beauty that i once knew.
it seems so far behind us...
...but its not. its right at our back door. i just pray it never knocks.