We are still waiting for an MRI appointment for Manny. I call every day to talk to the "MRI scheduler" at Scottish Rite, but I haven't really gotten anywhere. Tuesday, while Cindy (Jake's OT and Dr. Michaels wife.. in case you're just tuning in) and Jake and I were going hiking down the new walking trail at their offices, Dr. Michaels must have spotted us out a window and came to talk and ask for an update. After being so upset at his office last week, I was glad that he came to talk. He has made sure that "Joyce" at his office will always be available to me to help me schedule things and help me find a contact person at various offices. I am becoming to realize that maybe the lack of an attitude of urgency that the offices have is probably a "good" thing, although I am still making sure that I pester the crap out of everyone and make sure that things move forward.
I'm still very confused about about the "brain tumor." Although that word sounds so amazingly terrifying to a mother.... from my reading I'm wondering if the spot on his brain is anything like the cafe-au-lait spots on his body... just another birthmark? Something we will need to monitor but not an emergency? When I talked to Dr. Michaels last thursday, he said that the Dr. Reisner would be the one who would direct me towards treatment, and mentioned radiation, surgery... That terrified me. Absolutely threw me into a mental tailspin. After talking to Dr. Reisner, I feel a bit better.. slightly less frantic. I still want answers and am reading and watching youtube videos about NF1. It is a fairly common (1 in 5,000 people) disorder and can vary so much from person to person.
Meanwhile, in the past week.. my husband and I have been blowing off a little bit of steam (anybody on my facebook will already be informed). We were very excited about a Phish concert in Asheville, but sold our tickets because we just didn't want to be that far away from Manny. We were in the process of getting rid of our Knoxville tickets and decided at the last minute to leave the kids with my mom and drive for a quick overnight trip. It was the best therapy that *I* have had in years. I love the musical community, all levels of it, big or small.. and the energy that I absorbed from that group of fans will carry me on for quite a while.
When we got home from Knoxville there was a box on our counter that had just been delivered from Charles Vergos' Rendezvous Charcoal Ribs. It was marked as from a "Bea Arthur." We haven't received a package from a dead movie star in quite a few weeks, so we were perplexed. It seems that the online Phish community that I got Steve hooked on when we got married had sent us a huge meal. It was SO amazingly nice not to have to cook for the rest of the day after our little outing... and it only deepened the sense of community that I have felt with these people since the early 90's.
Thats just one example of the huge outpouring of love and support that we have experienced in the past few weeks. Sometimes I feel like its more than we deserve, because, after the initial shock, we are getting the feeling that, just like Jake's neuro/social issues,that this is just going to be a long long road that, while the past few weeks have been the scariest part of the roller coaster, its going to be long hike full of ups and downs. Thank you to everybody that has contacted me, sometimes completely out of the blue... and offered support, to watch my kids, given us gifts of prayer fellowship and tangible things. I never EVER know the right thing to say or the right way to act when someone offers their love and support, so I say thank you now.
Unless Manny's appointment for his MRI gets scheduled for Monday (which is pretty impossible at this point) I am hoping to head up to Bonnaroo to see Phish on Sunday night and stay with a friend up there. I feel guilty for running away and having fun.. but then again sometimes I don't know what the future holds, and I just need to inject a little more of that fabulous energy that I feel when I'm around music and energized people.
It was the possibility of music that made me keep the date open for Jake and Ariannes birthday party for Saturday, even though I had no idea what I was walking into last Friday. When Manny and I went down to Atlanta I was sure as the shoes on my feet that I was looking at brain surgery or doing a lot of research about radiation for my tiny boy. I was "sort of" there when my father had brain surgery about 10 years ago, so I have a tiny bit of experience in that arena... but that can't really compare to the fear that I felt on my drive down there. In the back of my head I was frantically trying to plan a party with food and live music.. with unestimated guests.... I think it was the only thing that kept me from breaking down, screaming and just simply not being able to function on a level that I needed to.
Jake totally knew that the party was "for him" (little did he know, eh?). He ran around counting his friends, and you can hear him doing so here:
"One friend, Two friends! THREE Friends.. TEN FRIENDS!!"
Ten must be a huge number if you are four.
pictures of the party here.
(Elsa and Steve... you can not even imagine how much I am STILL thanking you every day for helping me with this....)
My husband told me not to stay up late... and here I am at 11:20 blogging. He says I'm getting "the crazy eye" from lack of sleep, but at least this time its from going down and wandering around the Riverbend Festival in Chattanooga last night, and not from sitting in a chair crying when I'm supposed to be in bed. I don't think its possible to describe how understanding this man is. He somehow knows that my trips to see the music aren't just excuses to "party" but some sort of therapeutic missions that I can carry with me for months on end, and he loves me enough to work with me on going to see shows. I love him so much.
I love all of my boys so much.
P.S.... due to popular demand.. I am working on changing the name of my blog.
