Thursday, May 12, 2011

good news however you can get it

This morning, I saw on Facebook that my brother's new catheter was working well. And that it seemed as if his heart tests were fine. 




Even as on one level I'm going through life, getting things done, handling and juggling and dealing - pretty efficiently I might add - on another level my stomach's been in conceptual knots. Actually, I've had a pain in my jaw for days. I can't tell whether it's a toothache, sinuses, a new manifestation of a menstrual headache, or anxiety finding an alternate home. 

I just want my brother to be ok. 

Tuesday and Wednesday I was post-procedure hospital pick-up person. Both days, as I searched for  recovery areas, I nervously travelled beige halls lined with inadequate signage, wandering past medical staff still in surgery scrubs, patients in wheelchairs with tubes up their noses. Hospitals scrub people of their humanity. The harsh lighting, the exposed bodies of strangers on gurneys, the buzzers and blinking lights all can make one, at least me, feel small and lost. 

While to me and my brother every step of this journey is huge, in the hospital he's just another case, another file. 

Tuesday, when I found him after twists and turns on the radiology floor, he seemed fine. A bit sore, but we walked home on a beautiful afternoon, stopping for vegan treats on the way. Yesterday, tracking him down in cardiology, past doors that said "do not enter," wasn't so good. He was exhausted, woozy, dizzy. No wonder. He'd had 2 invasive procedures, 2 rounds of anesthesia, 2 mornings filled with IV's, and iodine stains, and paperwork. 

He is my hero. 

So often he handles this better than I do, with grace, acceptance, a (sometimes punny) sense of humor. 

I'm getting there. 

And so, there's one more round of blood tests he needs to make sure his infection, the one the necessitated the new catheter, the two rounds of antibiotics, the tests to make sure the valves in his heart weren't damaged, has been vanquished. 

If all is fine, we move forward. 

We already have a date. I've got my preliminary testing set up. 

This time I'm not putting anything on my calendar, not sharing it with the world at large, until it's actually happening. 

Being the donor who cried transplant isn't easy. Being the sister who's brother is struggling has been even harder. 

Still though, I believe with all my heart this was meant to be and that all will work out in the end. 

A little faith is a remarkable thing. 

Tuesday, May 10, 2011


This morning I was front row, center, in an open air yoga class in Bryant Park. Every bit of that sentence wouldn't have been possible a few months ago, even a few weeks ago. But, I let go of control, of my fear of the unknown, of discomfort in being somewhere I never was before. 

It was gorgeous. Cool bordering on brisk. The bright sky unmarked by clouds, trees towering overhead, leaves glistening with morning sun. I practiced surrounded by the high rises of midtown, light glinting off mirrored windows, the elaborate facade of the library straight ahead. 

This afternoon I was wandering the radiation floor of a  hospital, traveling endless beige corridors filled with staff in surgical scrubs searching for recovery so I could escort my brother home from having his new catheter put in. Another situation far beyond my comfort zone: people on gurneys, doctors still in masks, not knowing what shape my brother would be in when I got there. 

All I could do was smile as I asked directions. And breathe. 

Now I'm on a bus, heading to a high school fair, already half an hour late as I got the address wrong. I hate beyond hate being late. And I have no idea what to expect. After this day of extremes my stomach's in knots and I'm close to tears but, instead of giving up, I'll deal when I get there. 

Today was full of beauty and stress. Flow and anxiety.  Being present and being absent. Love and anger. 

I'm still breathing. 

The air is cool and crisp.

Next up is dinner with a good friend. 

Tomorrow state maths tests start. Then coffee with a friend. There's another hospital pick up mid-morning. A yoga class to hopefully balance things out. Design work mixed in when there's time.

I want to go to Hawaii when this is all over. Universe, I hope you're listening.

Monday, May 9, 2011

it's all in the way you look at things

The transplant is not today. I was getting lovely well wishes over the weekend and realized not everyone knew we'd been delayed. In fact, our subsequent date was taken off the table, so for those who might think we're good for May 23, we're not.

There are now a completely new set of hoops that need to be hopped through before a date can be set. And these could possibly have been avoided, if all the previous delays hadn't happened.

Who knows.

I'm still holding tight to it is what is and it'll happen when it's supposed to.

But, the infection my brother developed 3 weeks ago wouldn't have happened if the surgery had already taken place.

Just saying.

And perhaps, if his infected chest catheter had come out when the infection hit, 3 weeks ago, he wouldn't need the additional testing he needs now.


Medicine is not science. There are no definites. There are, often, conflicting opinions and differing interpretations. That, combined with miscommunication, or no communication at all, can lead to where we are.

Waiting. And hoping. With more procedures and specialists to grapple with.

For the next two days, as my brother gets a new catheter and then goes for more tests, I'm designated hospital pick up person. I'm good at that. I bring snacks. I animately chat (which can be supportive or annoying, depending on the situation). I generally have positive cab karma. I excel at shmoozing with nurses.

And after that?

We wait some more. For results of these new tests. To make sure the infection has been completely eradicated. And to let the many people involved in this discuss next steps.

At this point I wish I could host a transplant intervention. Get everyone involved in one room, lock the door, and not leave until everyone agrees on something. Anything. But at least there would be dialog and discussion in real time. And it wouldn't be up to my brother to mastermind that.

That's another thing I find disheartening about the way our system works. Why should patients be responsible for keeping things on track? They're they ones who aren't well—they shouldn't be searching for reports, setting up procedures, dealing with hospitals and paperwork and scheduling issues. There are so many ways a complicated situation like this can be derailed. I feel like, at this point, we've experienced most of them.


But, what can you do? And so I hope. Have faith. Stay strong. Hang on. And keep my fingers crossed that June is the month that's meant to be.

Sunday, May 8, 2011

mother's day

"He broke my glasses!"

That was the scream that startled me awake at 7:20 this morning, by a child, not my own, as he burst into my bedroom. 

That wasn't the first time I was woken up, abruptly, this Mother's Day. At 1:30am three boys came storming into my room, again with no knocks, all sopping wet from a very full glass of water inadvertently tipped over. That accident required a stack of towels and a batch of dry blankets to cover the spillage. 

At 2, there  was the gasping rasp of, "I can't breathe," coming from the edge of my bed. What I thought was an allergy attack - again, not one of my own kids - turned out to be pure anxiety. As he feared his imminent death, I talked this child down through super hero chatter mixed with deep breathing exercises. His father arrived 20 minutes later. Amazingly, most of the other kids at Jack's first ever sleepover, slept through the melee. 

"He did it on purpose!" and "He's paying for a new pair!" were the second and third lines that pierced my now shattered REM cycle. 

The early morning wrestle had taken a turn for the worst. Of course it was an accident. Of course it was one of those unfortunate things that just happen. Of course it was all worked out and smoothed over, by Izzy no less, but not until after this poor boy's mom was woken up on Mother's Day with a shout-filled ranting phone call. 

I threw on clothes and ran downstairs with the dogs for an early morning walk. And that was my first gift - getting out of that pre-testosterone insanity. My second gift is sitting in the coffee shop across the street and writing this, while Jon went upstairs to deal. 

And here I sit, hair something out of a Flock of Seagulls video, clad in old jeans and the shirt I slept in, drinking Brazilian coffee that borders on heaven, grateful that I am a mother. 

Yesterday, as Jack told me repeatedly, he had the best birthday of his life. On a day that generally has at least one sobfest, he was happy from 6:20am, when he woke up to open gifts, to 12 at night when I shut down the lights. It was 10 years ago yesterday that he arrived on the planet and changed me forever. 

It was a week of moments I was so grateful for my children. Looking back there was not a single fight or meltdown. From either one. I don't know that that's ever happened. I met Iz on her post play rehearsal walks home from school so we could spend extra time together. Jack and I headed to Chinatown one afternoon, on a spontaneous search for a game he wanted. We survived their first week of rigorous testing at school that they handled with maturity and relative ease. 

Man do I love my children. And how I appreciate and enjoy (most of the time) watching them grow into themselves. I bask in the love they lavish on the two puppies who are now a part of our family. And I am proud of their empathy and concern for me and my brother as we go through these months of kidney confusion and unease. They are supportive and understanding and kind. 

I am beyond grateful for the remarkable man I've been married to for more than half my life. Without him this amazing life I have wouldn't be. And the people who call me mom wouldn't exist. 

I am grateful for my own mom, who has so much on her plate but is still here for me to call every day. She is far braver and stronger than she ever gives herself credit for. 

And I am grateful beyond for the people in my life who love and nurture, who support and teach. As one of my wise yoga goddesses Ali said in class the other day - you don't have to have children to be a mother. 

And so, love and blessings and heartfelt thanks to the many mothers in my life.