scenes of summer

I haven't had a lot of trust in our technology situation of late, but finally organized some of the photos from our summer fun. Here are a few. No captions, since these photos say it all. More to come in a day or so.

 

the honeymoon is over

Yesterday all hell broke loose here. (Will I never learn to inform the universe that I'm feeling great?)

1. The boys started fighting with each other.
2. My horse got gimpy again. VERY gimpy.
3. The house is a total and complete wreck (two camping trips in direct succession and a cross-country trip for surgery will do that to a house).
4. Ants have invaded and staked out territory in the kitchen.
5. Mark and I talked about finances.

Well, I suppose I could have avoided the grief of the last on the list, but unfortunately, it's the month before the "new" year starts (schooling-wise) and I have plans. Big plans. Plus, Toby and I spent a couple days at the beach with Mark's sister and brother-in-law, and that got me to thinking how much our family needs a beach vacation. A vacation that doesn't involve surgery, as Ben would say.

And so the cash register started to b-rr-rr-rr-ing!

But the first four on the list, well, those just got me off on the wrong foot. I was literally in tears about Tess, my horse, who was doing great (just benignly neglected of late) foot-wise. She was very gimpy last year, but I healed her. And now, she's worse than before. Sigh. It feels as if any left over energy I might have gets funneled into someone with a chronic medical condition. Double sigh.

The morning hit its peak, though, when Toby and Ben were fighting over the breakfast table. Ben was feeling sorry for himself and apparently Toby and I weren't showing enough sympathy for his plight. (I was already taxed, having spent a couple hours dealing with Tess and calling various people who might have some insight and come to my aid.)

"I am feeling terrible about my life because of all the things I can't do!" he grumped.
"Oh, what things can't you do?" I asked, definitely not showing my usual compassion.
"Well, bungee jumping and sky diving," he said.
"You can do those when the rod comes out," I said.
"When I'm 19! I have to wait until I'm 19!" he said.
"How many people do you know who sky dive and bungee jump before they are 19? You'll just have to wait!" I wasn't getting any points for best mom here.

The conversation stopped but he glared at us. I returned to the reason for our raised voices: he had been calling Toby "stupid."

"Maybe you're not in the right frame of mind to go visit your friends today," I warned. Plans had already been made with Victor and Alex, two of Ben's favorite buds.
"No! You can't cancel that!" he and Toby shrieked together.

And then Toby burst into tears.
"Please don't cancel that!" he cried.
"Why are you crying, Toby?" Ben asked. "They aren't even your friends."
"Because," sob, sob, sob, "I just want you to have fun!" sob, sob, sob.
"But why are you crying about it?" Ben asked again, clueless.

"Because," Toby choked out, "I'm a mensch and mensches care more about other people than they do about themseeeeeeeellllllvvvves!" Oh boy! It was quite the moment, I can tell you.

Ben's eyes got pretty wide at that point, awareness dawning. Things calmed down. Apparently, Toby had justified himself and Ben apologized for his snarkiness. Moments later we rallied to get the car packed up for the day.

Suddenly, sobs rang out again. Ben and Toby had collided and Ben's back, specifically the exact spot where his adjustable growing rod attaches to his ribs, was in the epicenter of the collision.

Ben cried. And then, Toby cried. I stood and held one boy under each arm, patting them gently. "Ok, guys, it's gonna be ok," I said.

With that kind of morning, who needs nightmares?

Surgery the Sequel: Chapter Four

I was visited by a memory this morning. It swooped in on me as I trudged up the stairs after feeding the equines and cleaning the pasture, kicking off my boots in the mudroom, and padding past Ben and Toby sitting on a window seat happily engrossed in a game of Magic: The Gathering.

The memory is this: I am sitting on our cushy love seat, Toby tucked in close on one side, Ben on the other. It is the day after Ben has finally, FINALLY come home from the hospital after having four surgeries for Chiari I malformation, two months to the day since the first surgery took place. I am feeling that I never ever want to be away from my children. I want to keep them home, next to me, safe. Whatever it takes.

Deja vu.

Ben is home again, and he is almost pain-free. He appears lighter in body and spirit. He is calm and even. Happy, considerate, grateful, mellow. He has focused on Toby and playing with Toby all day, much to Toby's intense happiness. The baby brother really REALLY missed the older one.

Driving Ben home from the airport last night we talked about being apart from each other while he was in Philly. "I'm going with you next time," I said.

Silence.

"Weeeeell, I don't think so, Mama," Ben said. "Daddy can move me, help me get up, reposition me," he paused, "I really need him for surgeries...and he doesn't mind helping me pee into a bottle."

Well huh. I protested a bit. ("I don't mind helping with the pee bottle!") But, I guess I can handle this.

I just want everyone to know that we're all lighter here today. We're at peace because our Benny is doing so well. Mark's coming home early from work, it's Make-Your-Own-Burrito night for dinner, and the piles of dirty laundry are scattered in front of the laundry room door. Life is getting back to normal.

But next time (9 months from now, according to Ben's surgeon), next time I'm going with him. (Anyone know of a place that I can order an extra large duffle bag from?)

Surgery the Sequel: Chapter Three

A Yin and Yang Afternoon

Today Toby and I attended a picnic celebrating our friend James, a 17 year old Non-Hodgkins Lymphoma survivor. He was diagnosed with the disease at the turn of the year. He is one of Harry's friends and his mom, Sarah, is one of my dearest buds. This year he had chemo and radiation, lost all his hair, grew it back, and now is in the clear. The party was a thank you from Sarah and James' whole family out to their community for all the blessings and pots of soup and nights someone let the cat out and hugs that had been bestowed upon James' family this year.

I knew quite a few folks, mostly from our days at Harmony School in Occidental. People who know me and my kids and were actually around when Ben had his first serious experience with surgery, brain surgery, over four years ago. Of course, these folks want to know how Ben is and so, I told them. Mostly they were shocked to hear he was back in Philly for another surgery. It's like whiplash how fast the turn around was for this one.

At one point I stood with a few moms who were there for me four plus years ago. Moms who drove down to Oakland to take me out to dinner after Ben had been in the hospital for seven weeks, had had three surgeries and still wasn't healing. They all piled in a car and drove down to take me out for a diversionary dinner at which I learned that not only was I not the only one with a kid who'd spent time in the hospital, but every single one of us had a kid who at one time or another had spent time in the hospital. Every. Single. One.

Toby and I had another stop today. We were attending a gathering at our friends Anna and Dennis' home. Anna fought breast cancer two years ago and they just found four more tumors in her chest. So we gathered to bless her with our words, prayers and songs. I had my guitar with me and I led the group in some beautiful melodies of hope and healing.

Yesterday, just a day after Ben's surgery I felt such overwhelming lack of ambition. I was deflated, like a popped balloon. Looking back over the few weeks preceding the surgery I could add up the anxiety, the anticipation, the dread, the desire for it all to be over. And following that crescendo, Friday the surgery came and went in such a blur (I was truly asleep for most of it) and the relief was so strong to have come through, that Ben was okay, that it was over. The day after is always the day after. It's not a cliche for nothing. My day after was not so horrible, I suppose, but it still took me a bit by surprise.

As Toby and I were leaving James' picnic we got a call from Ben who had spent the whole day in pain. For some reason today was a hard day, but I've been told the third day after surgery is hard. That was today. Full of pain. (Have I mentioned how much I hate being on the other side of the country from my baby who is in pain?) He spent the day in bed. Grandma Joyce came to visit from New York. Dan the concierge brought him a popscicle. He's got his meds, so they're dealing with it. But, sheesh, I'm so tired of the pain...and it's not even mine.


I suppose I tell you all of this because we talked about blessings today at Anna and Dennis'. And Sarah's party was all about gratitude. And truly, when I have some energy I am so totally grateful for my friends, for hugs, for the popscicles and emails the blessings we get from our communities.

But in order to really see the blessings, there seems to be so much pain. Months of chemo or surgical wounds healing. Tears shed by a little brother missing his big brother while he's away. The anxiety and anger that fills my stomach as we wait to hear the results of a test. It feels like too much at times. And yet, I realize it's what life is all about. Every single one of us has wounds and loss and grief and where would we be without each other?

So, thank you for caring about me and thank you for accepting my songs of healing. This is not the end of my story, but I have a sniffly child sitting next to me who needs a hug.

Surgery the Sequel: Chapter Two

Our Hero Bounds Back

 

Next time I’m going with him. 

It didn’t occur to me until right before Ben left for Philadelphia that I’d never been apart from him when he had a surgery. Never, not once, in all the seven surgeries he had was I in even another building. And this time, surgery #8, I was across the country. That’s a bit too far.

It was not easy. For me. For him. I don’t want to repeat it.

I’ve never been with my other children when Ben’s had surgery either. I’ve never seen their anxieties rise to the surface, I’ve never hugged them before bed the night before his surgery to reassure them he would be okay in the morning. I’ve never seen their joy when hearing his voice after a surgery. And felt their relief when told he was on his way back to the hotel.

Until today.

Not that I didn’t know they felt all those things, but being present with them, and realizing that they also need a parent around during these moments of family crisis was important.

Last night Ben called before going to bed, completely undone by the distance between the two of us. It took a lot of self-control to console him and peel him off the phone into Mark’s arms. He requested that Harry, listening in on the speaker phone, invent a transporter device immediately so I could get to Philly on the double. He asked about 75 times that I hop on a plane and fly out to be there in the morning. His voice was like a small child’s, so vulnerable and sweet. Why did I agree to stay home, I asked myself.

But Toby held my hand as we walked up and down the stairs getting ready for bed, collecting toothbrush and toothpaste, a book to read, his retainer. I needed to get some emails out and update my Facebook status, and he spent the whole time calling from my bedroom, “Are you done yet? When are you coming in here?” Harry gave me a bearhug on the way to bed, after a long anguished day of the blues. I’d attributed it all to general teenage angst (I am so blind sometimes), but this morning he said, “You know, I think all that was about Ben.” You know, I think he’s right.

Next time, I think we’re all going with Ben.

Time has been surreal today. I few hours after saying goodnight to Ben, I awoke at 3 am, to call him as he rode in a taxi to the hospital. It was 6 am in Philly. He was still scared and unhappy, but at least the night was over. I noodled around, playing solitaire on my iPhone (and aggravating my carpal tunnel pain!) while I waited to hear from Mark that Ben had gone in to surgery. About 45 minutes later I got that call and somehow made my way back to bed, falling asleep until the next call, that he was out! Again falling asleep, I was awakened to hear Ben’s voice, groggy and fuzzy, but alert enough to tell me it was over and he was in his room with Daddy.

The sun was up here. At any rate, it was light and foggy outside. Toby woke as I squealed into the phone with delight. “It’s all done! Ben’s out of surgery! Do you want to talk to him?” I asked and so Toby’s first words were for Ben today.

Fast forward through a day of calls and emails and Facebook status updates, it’s 5 pm here and 8 pm there and Mark and Ben are waiting to be discharged. Tonight!

For those of you still unclear on what exactly took place today, here’re the gory details:

• An incision is made on his upper back, into a previous incision, I believe.
• The screws that hold the rod onto his ribs (with hooks) are loosened.
• The rod is moved down about a centimeter.
• The screws are tightened.
• The incision is stitched up and bandaged.

Two hours under anesthesia, but really only about 40 minutes of surgery.

He was given the IV after being sedated which took a huge amount of anxiety and stress off the beginning of the process. He has a large fear of IV’s having been a human pincushion at one point in his life! He had morphine post-op but hasn’t needed any pain meds since. He’s walking around, drinking, eating, joking, peeing…everything you want in a patient before being discharged.

I called and alerted our forces at the RC about our hero’s return. Earlier than expected, but with admirable wounds to prove his mettle. Because of our caution he has three days to play in Philly. A good thing.

Did I say I’m going with him next time? Did I say we all are? Just wanted to mention that.