Friday, October 19th - Odds and Ends

Good morning. So I want to tell you all some things that I keep forgetting. First of all though, Alex is having very good days and very undesirable nights. He has neither, eaten, pooped or peed in several days. I'm concerned about his hydration level too. But through all of that Alex still finds pleasure in his days. You should see him "change position" on the Sonic Wii Treasure Hunt game. The character does this kinda cool "beam me up" graphic which when Alex saw it for the first time made his chin drop and say "Wow, Mom did you see that? That was so coooool!!" And from that point on in the game, he forgot about winning treasures and just wanted to repeat that cool effect. Yesterday, we had an impromptu lunch at Snooze with some of Alex's favorite people! Which was followed by a play date here while Steve and I met with the hospice chaplain. I have no idea how we had the conversation we had with her about "arrangements". I just know that life is pretty surreal at times these days and somehow that helps you get through stuff you never imagined in your whole life doing.

Anyway, after taking a long drive with Nonni and dad (read as Alex's favorite napping place); Alex came home and even more friends started showing up. Pretty soon we were having a dinner party and the house was full of laughter, good Thai and lots of wine. Alex entertained the masses with his new "Incredibles" game! It was a very special night.

So back to the odds and ends. I have realized that I have not written about Zoe Grace in a very long time (I think). So I want to tell everyone that she is doing quite well. She has not been to school much in the past month or so, and she really does not seem to mind. She loves to watch Alex's Teenage Mutant Ninja Turtles DVD and if we did not entertain her in some other way probably would watch it 24/7!! She also feels and knows the energy of the house. You may wonder how I know this and let me tell you. As you may have read, Tuesday was a VERY hard day for me. I woke up crying and could not really control my tears much that day at all. Anyway at one point, I was in the kitchen (not crying) trying to figure out what to eat for breakfast and Zoe came running from the play room (directly across from kitchen) and jumped into my arms. For the next few minutes, we just stood there holding each other. She had her arms tight around my neck and her legs even tighter around my waist. That same thing happened later in the day and I must say at a perfect moment. I love this little girl and when I think of the tragedy that is predicted my heart aches and my tears come immediately.

Which leads me to my next point about "Why?" I have concluded that there is no "why". There is not one possible reason any of this should be happening. And if someone were to come to me and give me a reason it would be so inadequate as to explain why Alex's bright, shining beacon of intelligence, beauty and pure joy has to be extinguished. It could never help me understand the reason Zoe may never remember her brother. Nor why any mother is asked to survive without her first born. There is no WHY!! And somehow that knowledge gives me peace. At least I don't dwell on "Why?" anymore (okay sometimes, but not as much).

Another revelation I had just minutes ago and the reason I got out of bed to write to you concerns mortality. First some history. My paternal grandmother, who was an angel on earth, passed of breast cancer at 55. She never smoked nor drank a day in her life. My dad, who never went a day without smoking or drinking, passed at 55 from brain, lung and liver cancer (and that is just as far as they looked). So I have had it in my head since 1998, that I may not make it past 55 and that the day I turn 56 would be a wondrous day. Lately, my "clock has been ticking" and the thought of having a baby has risen. Steve said to me last night, "I don't want another baby, it is too late in the game and I don't want to raise a Down's baby. But that does not mean I don't want to raise another child." Then we went on to talk about adoption and timing so ZG would not get confused, etc. Anyway, in the wee hours of this morning, I started calculating how old a child would be if I were to get pregnant when I turned 55. Then I realized, how ridiculous this thought was because of Alex and his prognosis. Here I have been thinking that I was good til Alex was 18 or so. When in reality, I only have today. Just today. And so do you. You only have today with the ones you love and if you don't realize that every second of every day then you are living a lie! Don't count on any years to do anything. Why would you if you have read this blog for a while?

Okay, I'm off my soapbox. Today is a very busy day. We will be going to pick up the pottery Alex painted last Saturday with his cousin, Addison. And will have a mini painting party with the same friends from yesterday. That is after the oxygen guy comes this morning as well as two nurses visits and I am having lunch downtown after that, then painting. If you want to join us, we are thinking 2:30 at the mills. Just show up! Love to see you!

Finally, I just want to say thanks for all of the support. Your comments lately have made a world of difference and I am most appreciative!! A dear friend told me the other day that it takes him several hours to recover each time he reads the blog. I know this feeling since it is exactly what I went through reading the Steadman's blog. But just so you all know, you don't have to read this stuff! I don't know that I would if it took several hours to regain my composure and ability to function. Anyway, I do appreciate your comments.

Love and God Bless.
G

PS-Melinda, thank you for the comment. I would love to talk to you but don't want to interrupt your day. Perhaps you could email fightthebump@comcast.net and we could set up a time that works for both of us?