Misc. Rambling Thoughts and Messages

So sorry for not responding to any emails, snail mails or voice messages which you’ve sent. I’ve been receiving them, including one from a certain colleague which actually made me laugh out loud yesterday! I’m just not up to doing much more than sitting and mindlessly staring at Christi trying to soak this all in. She’s not really had any food since Friday and I continue to be filled with worry about how sunken her eyes look and how skinny she’s getting. Many times it seems like I just can’t take my eyes off this precious child who has taught me more about life than I could have ever learned any other way.

I’ve learned a lot since Christi’s diagnosis nearly 4 years ago (Monday). One of them being nurses are truly Angels on earth! Sweet Amy took my call each time I called her from the Ronald McDonald House last night, where I snuggled with Shayla but was unable to sleep. Amy told me Christi had been up to use the bathroom two times, but has yet to do “the deed” we’ve all been waiting for, for seven days now. She told me the number of times Christi hit her additional pain “boost” button and when inquiring about Shayne told me what a great dad he is. (I already knew that!)

Did I mention that from the time we left our room yesterday it was THREE HOURS until we were done with radiation and back in Christi’s room?! Even Dr. Maris said he couldn’t believe how long we were gone. He kept calling over here to see if we were back and we weren’t. (Now Dr. Maris knows us and knows Christi so if Christi would have been feeling well we would have “squeezed in” a trip to Barnes and Noble and maybe the zoo, but Christi’s far from those days! Yesterday she let me read a few books to her, but she’s far from being able to read for herself now.)

Liz Scott: I did think of something you could bring us. As you know from the radiation Alex had, hair loss occurs. This has been disturbing to me all week. Not only does Christi love finally having her hair back but she’s now a mature young lady of 9 years. I’ve yet to break this news to her and worse yet I’ve yet to tell her that she’s going to have a “reverse Mohawk” according to the radiation staff. YUCK! How humiliating! Can’t our kids get some dignity at least?? Christi has a nice hat collection at home, but of course I never knew things were going to be “this bad” when I boarded the plane. Could you please bring her a cheap, light-weight hat? The radiation staff told me she will look funny and she will cause stares with a “style” like that. The hair loss should occur by the end of the week so while there are no signs now of “getting out of here” it’s fun to imagine it. Thanks!

Shayla’s doing ok. The weather should be better today and radiation shouldn’t take so long so Shayne is planning to take Shayla out around the city to help her cool her heels. Unfortunately, the playroom here has been closed and will be closed the entire month of September because there was a virus and they don’t want it to be spread. Because Christi was miserable when they left and because we flew in for what was to be three short days I packed very few toys. Regardless, Shayla’s been such a good girl. Each day she draws cross pictures and each day she tells us she wants to go home and live with Amber and be like a sister of Amber’s until we come home. Each day she tells us she’s worried about her bunny dying from lack of food and water even though she knows Grandma and Laura and great bunny care takers.

Thanks to one of my sweet OSU Professors for the sweet email she sent me. My literacy group met without me lat night and she told me our family’s situation was central to their talks and that she’d inform me of the happenings as soon as I’m able.

Before I headed back to Ronald last night I clutched to Shayne’s neck, buried my head in his chest and asked if he thought she was the same or better or worse from the previous day because I really didn’t know. He told me that he didn’t know either and added, “I really don’t know which way we’re headed here.”

Then it was on to my “hassle” with the parking garage attendant. “Are you going to hassle us again?” was what I heard come out of Shayla’s mouth as I went to pay my parking bill. (Oh, talk about those embarrassing parent moments as I used my body to sort of push her aside hoping the gentleman didn’t hear my 7 year old daughter’s words.) You see the night before, I went to pay and it was $32.00. I told him that wasn’t right. He gave me the parent discount and then (I thought) tried to charge me double. I stood there insisting that I just pulled in at 6:30 AM and that he shouldn’t charge me two days. This went on for some time. Finally, he showed me the date on the ticket and showed me the date on the calendar which all cleared showed that he was right and my van had been parked there for two days. Oh, yes, how embarrassing! Perhaps I really have lost it. I had totally forgotten that we didn’t take the van back the other night. Oops!

So, I’ll update later today. Currently Christi’s still snoozing here beside me in her room as I type and she looks peaceful. Shayne and Shayla are looking out the window chatting away eating the food delivered for Christi since she won’ be touching it anyway. (Last night she asked for a sugar cookie much to our shock! This is the kid who doesn’t typically eat desserts and I’m certain she had no idea it was 8:30PM the cafeteria was closed and the rain was coming down in sheets. Ugh! I want her to eat (and to use the restroom) in the worst way!