I keep flashing back to this time last year, thinking about the state I was in, what I was doing and how I was feeling.
Good news is I have improved from last year.
The combination of steroids, zithromax 250 mg daily, mepron and photopheresis ALONG WITH INCREASING EXCERCISE seemed to help my lung ailment: bronchiolitis obliterans.
Let's not get confused. I'm not "cured." I'm not cured but coping.
What I remember most clearly from last year is Xander talking about praying to both God and asking Santa for me to be healthy by Christmas.
On Dec. 22, I was still hiding at my house in fear of ever having to go back to the hospital again, praying that I, nor anybody else, would ever have to experience what I went through in October.
And I was recovering from H1N1.
I was contemplating stopping my medications.
I was accutely aware that my life was so fragile I would not survive without my daily pills.
I thought a lot about the difference between dying while actively fighting for life and dying by stopping my medications.
The latter was a choice I was becoming more comfortable with.
I was having trouble seeing the difference between the two choices.
I felt so detached. My mind barely registered that I had a tube in my chest. I couldn't tell you if I had a cut on my toe. I remember lying on the couch in pain all day and wondering if anyone knew what I was thinking and why, if I was choosing to die, or dying, was nobody visiting.
But I lived for my couple of hours each day where I put on my brave face and got x up and moving for school or the hour after school where we'd (well he'd) sled like a penguin or try to get in on a game of 3-on-3 at the gym with the junior high kids.
Those kids were some good kids, even though they both had their teams, x would walk on the court and put his arms up. The guys would look at each other and play around him, every once in a while letting him change possession of the ball or give him a little shoulder nudge.
He loved it.
J was being the perfect husband. He made sure we had nightly meals and that our cupboards were always stocked and both X and I were fed and happy.
The whole time I couldn't breathe. I'd spend my days contemplating life like this, wondering if I'd become more of a burden than a contribution and thinking about X's wish.
On the 22nd I went to Dr.G to get the steroids I knew could turn me around by Christmas.
God helps those who help themselves.
AND I was healthy by Christmas!
I started to be able to walk more. I had more energy. I could walk longer distances. I would pace, slowly, just because I could.
I never want to take my breath for granted again.
It's so hard not to.
I was healthy, EXACTLY what x had prayed for.
It was a very concrete answer.
I caught x muttering, "Next time I want it without medicine." under his breath once while we were discussing my disease.
We talked about that. God had known what we wanted. X had asked that I "get better," but he didn't specify how.
I was better with chemo, steroids and pheresis.
We felt like we'd been bamboozled, like God had found the prayer loop hole and exploited it.
We'd known (had faith) that it would come true, but the "how" we"d left to the "professionals."
Well, at least that's how I felt.
So we didn't talk about x's christmas wish during the year.
I was doing better.
Life had turned into some kind of normal.
Our family got into a relative routine and x started to feel more secure, but of course, the Christmas season came rolling around and along with it more health issues: bone marrow failure, pneumonia, opportunistic infections plagued me.
I was still improving in the lung department though. I had found a fabulous pulmonologist out of Boston who I trusted with my life and decisions. Together with my hematologist and transplant specialist we'd worked out an effective plan of treatment.
I'd ditched my chest tube and oxygen tank and come around to being able to play X one-on-one myself. We'd set up at mini-pro basketball hoop and it was on nightly in the kitchen.
I was starting to get winded waaaayyy to early. I was bent over, sweating, gasping for breath and cursing my awful body all at the same time when x says, exasperated, "Mom, you knooow (put his sassitude in those two words) if you want to get better, all you have to do is ask."
I stopped and looked at him. Silent. Speechless.
Soooooo, all this time HE had decided his prayer was answered!
He was ok with the outcome.
He had gotten what he asked for.
I had been the one who felt jilted. I was the one who felt bamboozled, and I wasn't even the one who asked!
Yes, it's true, folks. I have difficulty praying for God to save myself. I lie in bed, and always think of something bigger and more important to more people. It has been for health care reform or for someones safety or someone younger's health.
I know, I should at least should pray for something global that will help me like to find the cause of the blood cancer's in my area.
IT had been me that was unhappy with the answer the whole time, and I'd projected it onto my son. As a child he understood he had prayed and his prayers were answers. No questions asked. Him and the big guy were good.
It was me with my adult ego who thought , maybe, I knew better.
But I don't. I do know that last year God and Santa did answers Xander's Christmas wish and I have all the faith in the universe that what I'm experiencing has a purpose.
Xander's prayer and its answer gave me much more than a straight cure could have. It taught me about myself, my personal resilience, and now I get that even though I may die from this, it doesn't mean tomorrow and it may not even mean in the next five years.
Answers to prayers can be tricky like that, but they do get answered, especially Christmas ones.