and Happy holidays to everyone. We are at home now. Well, sort of. Still in boxes and the kitchen is partially complete...but we are sleeping in our own beds. This leak/home repair has turned out to be much harder than I anticipated...searching for that silver lining has been harder than usual with regard to all of this..
Last night we were going to attempt to sort through boxes to put up a christmas tree in the family room. Since it was filled with boxes already, Samantha suggested that we just make a tree out of boxes. Seriously...she is a genius! We made some ornaments, a paper chain and tonight we put on a set of lights. I do believe it is a lovely tree. One that I treasure. Our "make the best with what you've got" tree. love. love. love. And that's all that matters.
...I thought I'd pop in and tell you another story about love. This past weekend- I was, ahem, not my best. (Still don't have hearing in my left ear- and just tired and run down.) At some point I got the idea that I needed to eat really, really hot food to clear out the sinuses- my own unorthodox organic antibiotic boost program. I ordered some hot wings delivered- and when they asked me what kind I answered, "Really hot. The hottest you got." After they arrived- we ate pizza sitting around in our pjs (still at my moms) and I asked Chase if he wanted a hot wing. I chuckled at the thought of him trying one...and his face lit up and he said yes. Do you see where this is going? He took a big bite and immediately his eyes bulged out in shock and I caught a case of the giggles. We all did. The poor little guy loved hearing me laugh so much that he said anxiously and excitedly (as he fanned his mouth with his hand and jumped out of his seat), "Do you want me to take another bite??" He was willing to do absolutely anything to hear that laughter again. It was hysterical. And loving. And a moment I won't soon forget. Sam broke out her phone to videotape it- but neither Colby nor Sam was crazy enough to try them.
My friends and I always joke about the movie of my life...and the many sad turns. I can just imagine that scene in the make believe movie. We all genuinely laughed for the first time in a while. And it felt good. And, I think it helped my sinuses after all.
to have to post that another aml friend passed away today. Though I never met Jeff, I have corresponded with his wife Jamie since Jeff was diagnosed shortly after Glenn in 2007. At the time of his diagnosis, Jamie was pregnant with their son JD. He has fought long and hard- and their young little family has travelled several hours each way for 2 years to receive treatment in Hershey. I know some of you follow their story since I mentioned a post from her a couple of months back. (She writes a blog called Respectfully Sassy)
Please keep them in your thoughts and prayers. My heart just aches this week- there have been so many young leukemia patients that have relapsed the past few months.
I just typed and erased my description of what is going on here at the Gleason house. Suffice it to say that I am needing to make some changes before I have a real "falling down" (reference to the Michael Douglas movie where one last thing completely put him over the edge) moment.
The house is completely torn apart. I am thinking that by this time next year I ought to have everything put back into its place. I have a compacted sinus which means I have no hearing in my left ear and the nerve is irritated causing a constant feel of "novacaine wearing off" on the left side of my face. And my ****** cell phone is not working.
All of this, in combination with the intensity of the past 9 months, the approaching holiday season, and attempting learn to do this without Glenn has me needing to make some changes. Announcement: My superhuman cape is off. I will not be able to create, design, order and send a beautiful, and meanginful holiday greeting to so many of you who deserve them. I will not be able to bake cookies to drop off at friend's houses though every part of me wants to. I will not be able to hand write timely thank you notes to so many of you who have shown us over and over again that you care. (and my head just rattles off so many names...so many people I want to thank)
I am taking the rest of December and all of January "off". I don't want to be rushed from here to there. I need to sit and hold the kids and read them bedtime stories in their own rooms and have 30 days in a row where we don't feel rushed. I want to put them on the bus with a smile and be right there again when they get home. They deserve that. I deserve that. My heart is still racing like Glenn is still in the ICU. My legs are shaking as if I've just gotten bad news. I can't keep this up day after day. The past 6 weeks has consisted of rushing between appointments, phone calls, meals with friends, homework, financial paperwork, school assignments and household repair deadlines. There have been too many times where I held my finger up to shoosh the kids while on the phone. Too many times I yelled..."hurry WE'RE LATE GET YOUR SHOES ON AND GET IN THE CAR!!!" AND that's backwards to me. What is important? What is really important? Deep breath. Okay. There. Now nothing else is getting done until we all slow down. (Now, the house is still a complete wreck and we're still living out of a suitcase but only for another week or so) No more meetings or appointments. It will all have to wait until the end of January.
Every day- statistics get sent to me via email of how many people came to the Team Gleason site. So, every day I feel like I am disappointing hundreds of people and I just have to let it go. I will not be writing here until January 31st. I just need to clear my plate right now- so that I can remember to breathe and focus my energy in a strategic way. Toward something instead of running away. Slowly.
I am excited to announce that Team Gleason is going to partner with The Great Guy Group. (www.greatguys.org) They are an established charity that aligns directly with our goal of directly helping families with cancer. Doing this will allow all of the money donated to be used as previously discussed as well as fund some of their current projects. Please let me know if you have any questions regarding The Great Guy group or send me an email if you or your company would like their non-profit id number. More on this great charity later. When I reconcile with my inner artist I am going to do a slideshow just for them.
I've got a lot of emotion swirling these days about two fellow aml patients still battling the disease. Please keep Jeff and his wife Jamie, and Caroline and her husband Adam in your thoughts and prayers. Sometimes I find myself still searching for a cure...still wracking my brain for a solution or possibility of better treatment, cure, who knows? all in my own little head. Must. Shut off. that part of my brain.
Promise me to enjoy the moments-really enjoy the moments of your holiday. I'll be here trying to focus only on what is important. Read. repeat. Please accept my sincere gratitude for all of the many prayers, thoughts, cards, gifts, donations, good deeds, and phone calls. We certainly feel your love - it will continue to be a source of strength for all of us in the weeks to come.
much love- and melding into the words of this song today-
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