Thursday, October 27, 2011

awesome

I got a call today on my cell phone from Ben.

"Well, Mama, I'm getting out of here today. Going back to the Ritz."

"That's GREAT! How are you feeling?"

"I am awesome, Mama. Let me repeat that: I. AM. AWESOME."

His voice was full. Full of pride and happiness and awesomeness. I haven't heard him sound so strong in months. Years maybe.

Earlier today I called Emily at the Ritz. She's the Assistant to the General Manager. I told her the story of Ben's text message from the lobby upon his arrival. I told her how he loved the desserts. My voice cracked when I thanked her for all the Ritz does to change Ben's experience of his medical travails. The Ritz is like an incentive program on steroids for Ben. Get up and walk. CHECK. Get up and pee. CHECK. Eat something. CHECK. CHECK. CHECK. The sooner you do all these things the sooner you get to go back to your comfy digs at the Ritz. Oddly enough, Ben does not respond to most incentive programs. He is not easily coerced, manipulated or motivated. But, he now knows the routine at the Ritz and it's pretty sweet.

That's it for now. Just an awesome update. So very happy to have it share.

Wednesday, October 26, 2011

skin-on-skin


When Ben was born I was quite sick. I was dehydrated, running a fever, some kind of virus was in charge. I went into labor two weeks early and even after several hours in the hospital on an IV the nurses weren't convinced that it was "time." Eventually, though, Mr. Ben made his appearance, and even though he was early he was a nice 8 pounds.

But, due to the distress in his last days inutero, for several weeks he wasn't able to maintain a stable body temperature, so we were sent to bed together to have skin-on-skin contact. I'd peel down my nightgown (and pray I wouldn't leak milk all over him) and we'd undress his little body. We'd wrap up together under flannel sheets and flannel blankies and a heavy down comforter and nap...and nurse...and nap. I mean, what better to do? He was a sleepy new baby and I, a sleepy mom. Now that I think about it, of course all mamas and babies should be so, tucked away in warmth and safety, sharing the heat they shared for the first nine months. But, at the time, not being quite so earthy-crunchy (or informed...or evolved) as I am now, it was a prescription for a fragile time, for a fragile baby.

Last night, as I lay in bed trying to sleep, heart racing, thinking of my baby across the continent, laying in his bed trying to sleep, my mind paused on that memory and I was struck by the significance. Because, really, in all I do as a mother, it's that, absolutely. Even though he is 3000 miles away from me, I held him to my skin and I gave him the warmth, and security, and stability he needed to know that I, his mama, was there to keep him safe.

And when, at 3 am, I awoke, my body aware that 3000 miles away he was awake, and sitting in a cab on his way to the hospital, I began our two hour text-versation with these words: "I'm here."



* * * * * * * * * *
Update: Ben is out of surgery. All went well. He has a new 17" rod installed. He's resting, eating ice chips, and watching TV. It's not his best day, but I can also tell you, it's not his worst! More later...

Tuesday, October 25, 2011

the usual



Frozen Snickers cake ala the most lovely chef at 10Arts at the Ritz
 It's that night again. The night before. The night before Ben's next surgery.

I am here, sitting in the darkening office, twilight upon me. He is there, in Philadelphia, a tummy full of Thai food, tuning out the future, watching TV with his dad.

I didn't hear from the hospital this time. Days ticked by and no call came from Dave in Anaesthesiology. So, one day last week I picked up the phone and called him myself. "Dave," I said, "Ben's coming in next week for his surgery and I was wondering if there was anything you needed to tell us?" "Oh no, Mrs. M," says Dave, "We know you and Ben and we know you know the drill. We figured you'd call us if there was a problem."

Sigh. We're regulars. Regulars in Anaesthesiology (and the OR, and the surgical floor, and the cafeteria, for that matter) at Shriners Hospital on N. Broad Street in Philadelphia. This is definitely not something to which one should aspire. It's not like when I was in my 20's and was so familiar to the guys in my favorite downtown Oakland Cambodian restaurant that they knew my voice on the phone. No, it's not quite that good.

Ben is so familiar with the drill that he knows, at age almost 14, which needles they use for his IV, which needles he prefers, in fact. That's too much. Too much information. Too much surgery.

Of course, a plus is that he's also a regular at the Ritz. That is good. Last night, after an easy cross-country flight, Ben sent me a text that read: "Hello ritz it's good to be back." And a little bit later a platter of delightful desserts arrived at his doorstep. Then this text came to me: "HOLY SHIT THEY JUST COMPED DESSERT AND IT LOOKS AMAZING IL SEND PICS BRB"  (*that's Be Right Back, for those of you who don't know the lingo).

Alas, there's a silver lining. Our story at the Ritz is beyond Good. Good Samaratin. Please don't think this is a silver spoon story. Oh no. This is a good-to-the-last-tear-get-out-your-hanky story.

But, tomorrow he will have his ninth surgery. Mine too, if you want to think of it that way. It's sort of a two steps forward, one step back kind of deal. They're replacing the rod that's hooked onto his spine and rib cage with a longer one. After this he'll probably be an inch taller or so with a straighter spine for a bit. And then, as he grows and he is in a big growth spurt right now, it will curve up again...and we'll schedule another surgery. Dave won't call us, but the Ritz will put on, well, the Ritz, don't you know.

Not sure how soon we'll be back there for "the usual," but we will be back.

Tuesday, October 4, 2011

student of the net



I decided to indulge myself this fall and signed up for two online e-courses. It's a bit like ye olde correspondence course but using all the latest technology: internet, email, pdfs, videos, photo pools, conference calls, etc. These types of classes are popping up all over the 'net offering opportunities for people to dabble in writing or photography, home organization, cooking, crafts, women's health, and probably just about anything you could possibly be interested in.

I found my classes through the blogs I frequent. I am devoted to both of the women teaching these courses and after reading about their classes for quite a while, I dove in...two at once! The two classes I enrolled in are How to Cook Real Food from Nourished Kitchen and Unravelling: Ways of Seeing Myself from Susannah Conway. Traditional diets cooking and photography/writing/self-discovery. Some of my favorite pastimes.

I am enjoying the pace of the classes. You can check in and do everything as it comes out, or you can let things slide, do two assignments in one week, or skip the parts you don't want to do, or do them later. No grades, no critiques. This is how learning should be...just for the intrinsic value, just for the love of it. How to Cook is 13 weeks of recipes and cooking lessons. Unravelling is eight weeks of photography and personal journaling activities. In HtC I've learned how to make broths, roast grass fed meats, make cultured dairy products, put together a fantastic salad and utilize seasonal vegetables. In Unravelling I've taken a lot of pictures of my feet (and seen a lot of other people's feet too), shared some of my own stories, read lots of others', and done some very interesting contemplative writing. Both classes are giving me an opportunity to carve time out for me to indulge and do something wonderful. The cooking has a direct affect on the whole family, of course. And the photography and writing make me feel whole, so that has a trickle down affect.

I'm sure you'll see more about what I'm doing here if you stay tuned. But, I encourage you to look for your own inspiration online. There's a whole world out there!