She Loves Me, She Loves Me Not...

As some of you have noticed, Juliana has become more active on Facebook.  Although plenty of people think that little social networking site is a trivial waste of time, I can assure you that sometimes it is a therapeutic tool for both Juliana and
me. Because Juliana is more interested in what Chris is doing during this trip away, she is actively seeking his whereabouts and that often leads her to Facebook as a way of sending and receiving messages from him.  Her renewed interest in ‘creeping’ his pages gave me the opportunity to sneakily remind her about respect, perspective and the value of correspondence. Watching the comments on ‘For Juliana’ also gives her the chance to see the impact she has on other people’s lives, a concept that still seems to confuse her. But some people write short stories of how their life is changed for the better having known a little bit about Juliana and she is gaining interest in knowing more. Things that she posts she is immediately asking if anyone ‘liked’ it or if they commented.  After her Happy Birthday to Chris video got so many views she was intrigued enough to ask if she could make another video to post. I told her that people might really like that so maybe we will see what we can do to create and post more videos of the ‘new Juliana’, although videos of the ‘old Juliana’ are still impressive enough to resurrect. One example is a video that was assembled by Juliana’s friend Mike Schick of Third Reel Productions featuring a very special song. Let me take you back….

Christmas morning 2007 … We were just coming to the end of opening the presents and Juliana was getting restless and excited. I knew she had a present for me and I could tell she was very eager to give it to me but she wanted it to be at the end. So as the final presents were opened she made us all assemble in the kitchen as she placed a CD in the CD player. The music started and I wasn’t sure what to expect but I assumed the guitar in the beginning was Chris. It didn’t sound familiar so I was thinking initially that we were hearing a new song he wrote. Then the words started and I heard it was not Chris singing but instead, my original favorite voice: Juliana’s. The song began…”Mother, dear…you can’t begin to see…” Now, I don’t necessarily consider myself an emotional person but it only took those 20 seconds to have me sobbing. I will let you listen to the rest of the song and just try to feel how I felt hearing the song they called simply, Song for Mommy and Donnie. The second verse is about my husband Donnie and as if my sobbing weren’t loud enough, his joining in made hearing the song nearly impossible. We stood there in the kitchen hugging and crying out loud with the most physical emotion I had ever experienced to that point. That still remains the best present I have ever received. Now that Juliana’s melody has been replaced with monotone, her expression replaced with stoicism, her affection replaced by resentment, the song remains a memory of a time and a daughter I ‘once knew’. If I sound a bit mournful, I offer a half-apology. I am forever grateful that my daughter lived to forge this new life, which may in fact be more meaningful and beautiful than the one she planned. And as if my wishes for the future I see shaping up weren’t enough to find endearing, I also very much love this quirky daughter that is flowering into a brand new personality. But the truth remains that you just can’t have a child like I had in Juliana and not miss (and sometimes mourn) what is forever changed.

Speaking of changes, they continue to be pretty much positive. Although she is still mostly walking on the dark side of attitude, she is doing it on her own two legs. She is still walking everywhere in the house, and in fact we don’t even keep the wheelchair on the level of the house where she mostly stays. It sits upstairs by the door so she can get to the car without walking. I would love for her to want to walk to the car as well, because she could do it, but she isn’t quite that eager. Her walking hasn’t improved much in the last couple of weeks but it hasn’t gotten worse either and that is good enough for now. Her voice had a brief setback when she suddenly, inexplicably was hoarse for two days. She had no other symptoms, no pain, just a reduction in her ability to vocalize.  On day two of her altered voice she said to me, “Great, it’s not bad enough no one can understand me but now they aren’t going to recognize it’s ME talking either.” See? How can’t you still love that cuteness? 

She is also trying a little harder to be the adoring older sister she was to Delaney and Mackenzie. We had a brief conversation about specific things they are missing from her and I could see she was taking that all in. Since then she has been reaching out to them in a few different ways, in an effort to make them feel better, and they don’t really notice her agenda, they just appreciate her recognizing them again. In the grand scheme, it’s just a couple of pennies but the more of them that come in, the more you realize how many you needed to begin with.  I am still reading For Juliana: Almost to the Almost, One Penny at a Time  to Juliana and I can tell how naïve I was back then not understanding the detailed 'itemization’ of the recovery. But lest I get overwhelmed by the laundry list of things to repair, every once in a while I notice something has slipped into the ‘improvement bank account’ that I wasn’t even tracking. It's moments like those I feel like we were given interest on our savings such as this morning while ‘working’ with Mackenzie she was asked to write something on the white board so Mackenzie could figure out what she was writing. She wrote the message and Mackenzie just stared at it for a long moment.  “Let me see it Mackenzie, I can help you figure it out.”  She just looked at me and said, “No mom … Look.”  She turned the white board around and we both smiled at Juliana who looked blankly at us, unimpressed with her work as usual.  But on the white board, written as clear as can be were three words: ‘Love from Juliana’. 

I might just call that one doubling our interest.