Tuesday, March 31, 2009

Wild Geese

I've been quiet here for a few days and it's not because there isn't anything going on. I think I am just stuck. The things going around in my head aren't fitting into neat little categories, and, in the case of Ruby, I desperately need to write about her stubborn personality and obsession with food but how to start when I've barely mentioned her here? She is not the child with Prader-Willi syndrome but some days we doubt the genetic testing. How to explain the fear and anger and self-doubt I have around how I am parenting her?

I know what is getting in the way of writing -- I'm a recovering perfectionist and am slipping back into old habits. I need everything to be "right", to be "good", and avoid things if they can't be. It started in 4th grade when I desperately wanted to win the "General Excellence Award" for being the best all-around 4th grade student at my school. I got obsessed and I've been like that every since. Until, of course, Oscar was born and I realized that I couldn't control life. I couldn't be perfect -- there was no such thing. But still it creeps and seeps into my life in odd ways.

Lately I've been reflecting on the fact that my unwillingness to make a mistake, has paralyzed me on many fronts. Writing, talking to Oscar's classmates about PWS, buying a pair of shoes! And how many years now has our house needed a new roof, paint job, floors refinished? How long have we been talking about updating the pink and green kitchen? The purple bathroom with no tiles in the shower so the water just seeps into the walls? But because I am afraid of not getting it "right" (as measured only by me), I have done nothing about any of these tasks. Sure I have the excuse of being busy, but I know what really stands in the way.

So, in honor of National Poetry Month which starts tomorrow, I am going to dig out my favorite poem by Mary Oliver. This poem is what got me started blogging in the first place, and has helped me hit PUBLISH POST every time, even when I know that more editing or rewriting would make it better. It reminds me that I don't need to be perfect and that the world is much larger than me and my fear, anger and doubt. I can just write. If that first post about Ruby is confusing or disorganized or out of context then I'll write others to fill the gaps. I need to just love what I love, and right now I am loving writing.

Wild Geese

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting —
over and over announcing your place
in the family of things.

by Mary Oliver

Saturday, March 21, 2009

A Good Day Afterall

The rain never came. I did keep looking at those dark gray skies, begging them to open wide and save us, but all we got were some occasional sprinkles. And yet, it still turned out ok, better than ok... it was a really good day at the ballpark.

Oscar got on base three of the four times he was up to bat. (It helps that the coaches pitch in Single A and it turns out that there are no strikeouts.) On his first at-bat he hit the ball solidly to short on the 3rd pitch and made it to first with time to spare. We were stunned. On his second at-bat, it took quite a few more pitches but he finally made contact. He was out before he could make it to first, but he didn't know and kept going till he reached the base. He took the news well, though, and trudged solemnly back to the bench. A teammate met him partway and gave him the special Blue Jay's handshake. That's when I teared up. No arguing, no "private conversations". A whole lot of respect for the rules of the game. Comforted by a teammate. Wow.

Defense was a little trickier. Oscar played third base in the first inning. Paul stayed nearby on the sidelines, coaching him along. He watched all the balls go by, but he watched all the balls go by. He was down and ready at every pitch, and managed to sometimes get his foot on base when a runner was heading his way. Paul helped him orient his body so he could keep that foot on and still look for the throw. He was starting to look like he understood, and he was definitely focused.

I didn't see the whole game -- Abe's game was on the adjacent field so Ruby and I were moving back and forth. Paul said Oscar started to lose steam around the 4th inning, but he hung in there! When the game was over I asked Oscar how it went. He grinned wide and said,

"It was a challenge, mom. Yeah, it was hard
and fun. It was a real mix of all of those three things -- challenging, hard and fun!"

He was practically bouncing down the sidewalk as we were talking. If you know Oscar, you know he doesn't bounce, but that is how happy he was. I'm so proud of that kid and his wonderful spirit. Keep it up Oscar, keep it up!

It's Not Raining Yet

Lots of ominous gray clouds here in Berkeley, but no rain yet.
Here are my boys off to their first games of the 2009 season.
Go Rays! Go Jays!

Play Ball?????

Last Saturday's baseball practice did not go well. Paul called me from the field about 45 minutes in and I think his exact words were "This is a DISASTER". Oscar was having a terrible time catching the ball, among other things. Honestly, I don't think his fingers are strong enough to close a mitt (slight problem). The coaches gave him a tennis ball to work with (great idea!) but then Paul accidentally bonked Oscar on the chin with it. As in, Paul lightly tossed the ball and Oscar didn't try to catch it or protect himself. When Paul called me, Oscar had retreated to behind the backstop and was having a "private conversation".

Oscar has a lot of private conversations. Generally, I think they are a good thing. He gets really upset and stomps off to a quiet space to argue his point about why we are all wrong and he is right. I've spied on him a few times and I see lots of hand gestures and overhear "See!?" and "I'm right!" and "You don't know!" In his private conversations he gets to create an alternate reality and he wins the argument. When he returns, he is often tired, but calm and resolved. Most private conversations happen in his bed and we usually just go about our day not paying too much attention.

It's a little trickier when the private conversation happens in public. It's just not exactly "private". If we try to talk him down the situation just escalates - more stomping, yelling and pulling away. If we ignore him...well, it can be a little uncomfortable that your kid is freaking out, yelling at an imaginary person while you stand by trying to look bored. I'm ok with it. But I completely understand why Paul called me in that moment. Shame, exasperation, desperation.

The coaches noticed of course and inquired. I'd sent them a big email about Oscar before the first practice, ending it with a cheerful "but don't worry, one of us will always be there...".

Oscar rallied eventually. Paul had been thinking of just putting him the car and heading home, but I disagreed. "Remind him how much he wants to be on this team. Remind him of his promise to work hard and not give up". It worked, but both Paul and Oscar looked exhausted when they got home.

I couldn't believe there was practice again on Monday. Paul had planned to be there at the start but got stuck in a meeting so I was down at the field with a super cranky Ruby waiting for him to show. Ruby didn't want to get out of the car, so I backed the car into the space so that we could look directly onto the field. I could keep an eye on Oscar while staying with Ruby in the car. Practice started off ok with running laps. Oscar was slow, and kids were passing him, but he was trying hard and looking happy. A few minutes later Oscar was warming up with one of the three incredibly patient coaches. She would toss a ball to him and he would try to catch it. And then he would take no less than a full minute to position the ball in his hand (gotta line up those stitches just right!) before he would throw it back. I never saw her flinch. She just stood there waiting. If it had been me, I would have been frustrated and trying all of my tricks to get him to move through it faster. A game perhaps -- pretend the ball is made of fire and you have to get it out of your hands quickly. But from my front row seat in the car there was no way to communicate. I could only watch. And I was so grateful for her patience.

As the minutes slowly ticked by, and Paul still hadn't arrived, I really tried not to watch anymore. The kids had moved into the field for fly ball practice. One coach popped balls up from home plate while the kids tried to catch them. They placed Oscar in the pitcher position, but he kept turning around, looking away from home plate. He was looking at the other kids to see what they were doing, but also at me, in the car. I think it was really really hard for him and he needed someone to tell him what to do. I turned around, toward the back of the car and Ruby, hoping that he would go back to concentrating on practice. But he didn't. He just kept looking towards the other kids, towards the car, towards me, lost. It was painful, but I was stuck...no way to get on the field with Ruby in tow. I really needed Paul.

Paul arrived what seemed like an eternity later, but he was only 1/2 hour late. He sat on the bleachers for a minute assessing the situation, but it was clear almost immediately that he needed, in his words, to "get in the game". Oscar needs the 1:1 support of someone telling him what to do out there, and still it is a huge challenge. We probably shouldn't have let him talk us into this. It is just too hard.

Today is opening day. The Blue Jays play the Mariners at 3pm. Oscar is anxious - we know because he's collecting all the pieces of his uniform and every few minutes he'll ask a question or offer a concern. He's lost the pre-season excitement he had just a week ago. His eyes reflect his own uncertainty, or maybe he's mirroring mine. I'm not worried about him bobbling the ball or striking out (that's bound to happen), but I am worried about him feeling defeated and lost. I'm worried that if we have to withdraw him, for his safety and sanity, that it will be a bigger blow than if we hadn't tried at all.

Maybe it will rain.

Sunday, March 15, 2009

Play Ball!

Oscar's first day of Little League practice was Thursday. He's playing Single A, on a team with typical kids a year or so younger. We're just a tad nervous...he can't catch, his throws come with a lot of effort and not too much accuracy or speed. His timing on hitting is waaay off. He's been know to argue or cry when he is out. And last year, in t-ball, he spent a good portion of every game crouched down by second base playing in the dirt. He rarely saw a ball coming his way, and I'm surprised one never hit him. So yes, we're nervous.

I tried to switch Oscar to the Challenger league -- to the baseball team for kids ages 5-19 with all types of disabilities. I thought it would be a better match. But he was adamant -- his heart was set on Single A. He wants to play on the same fields as his brother, as his friends. He's been sitting in the stands, watching, for years, and now he wants his turn and it has to be the full Albany Little League experience. He is clear.

For the first time ever I tried to talk Oscar out of something because it might be too challenging. Usually if he wants to do something I jump aboard and figure out a way to support him. This time, though, I told him frankly that he'd have to really listen to his coaches, that he couldn't argue the calls, that he couldn't "opt out" of activities, that he'd have to practice, that he'd have to be a good teammate, and that he might not always get on base. I didn't tell him he couldn't play Single A, but I felt like I had to be honest and let him know this one could be a real challenge.

We don't talk about his disability too much. We talk about abilities and strengths. And of course we all have things we are working on. I don't ever say "You can't because you have Prader-Willi syndrome". But I sort of did say that when I told him all the hard parts about playing Single A, didn't I?

When I was done, he looked me straight in the eye with more resolve and wisdom than I'd ever dreamed he'd have and said:

"Mom, I'm up for it. I can do it, I know I can."

He understood my concern, and was telling me that he was going to work past his disability on this one. I was so proud of his fighting spirit...that flame we've seen burning in there since birth. Of course I said yes.

Still, I was sort of jittery and nervous on Thursday. Paul stayed down at the field with him "to facilitate". When I left, the kids were all lined up playing catch with a partner. Oscar's partner was one of the coaches and Oscar wasn't catching any of the tosses. I didn't care about that...I was just so proud of how hard he was trying.

One of the coaches emailed this picture Thursday evening. He took pictures of all the kids running the bases so it took me a minute to see that this one was Oscar. I still can't believe that's my kid --he looks like he might even have a little speed.

Go Blue Jays!

Tuesday, March 10, 2009

Onion Rings

I've been feeling a little bit guilty about my last post. There is so much raw, screaming, wood-splintering grief in the world that I don't feel I have much right to complain. Plus, this was supposed to be a blog about "finding joy". There was little joy in that post.

I think I'm turning a corner though...as my friend Beth commented, I'm rising back above the water. I took the kids to the local (grass-fed) hamburger joint last night. I ordered Oscar and Ruby the usual -- one kids' menu hamburger to split, orange slices instead of fries, and salad on the side. This time I reminded the waitress to give them the lettuce and tomato with their burger. (For some reason they leave it off for kids - argh.) Oscar eats the orange slices first. He works on them for quite a while making sure not to miss a speck of the sweet fruit. Even Ruby says "ewww, Oscar, don't eat the white stuff". He moves on to his half of the burger, eating it plain. He doesn't want the lettuce and tomato on his bun, but he does want it. I end up cutting that up and mixing it into his salad, which he eats next. Slowly. All that chewing isn't easy in a low-toned low-saliva mouth.

Then he starts on the slice of red onion. (Wait -- I didn't ask for onion!) At this point I realize that I must be starting to feel better, or maybe it is the guilt overpowering the grief, because I catch myself thinking, "So what if my 8 year old is eating a red onion ring by ring? He is here. He talks to me. He makes jokes. He is alive!"

This is what I know: A Berkeley family is in terrible pain right now over the tragic death of their kindergartner in a traffic accident. I passed the site of the accident today -- teddy bears, signs, and flowers adorn the corner where he was struck down on the way to his after school program. I can't imagine. I ended up telling the kids a boy was injured because I want them to know I am serious about streets. Ruby gets it and is not balking about holding my hand anymore. Oscar is slower but I keep a hand on him. Abe is not only looking left, right, left, but back over his shoulder to check for cars making right turns.

And that is not all: Another woman in our community lost her husband when he was hit by a muni train in San Francisco just moments after telling her he was on his way home. I'm reading posts at www.hopefulparents.org about families grieving the loss of their children and facing all sorts of challenges I never dreamed of. And more people are newly diagnosed with cancer, recovering from serious surgeries, babies are being born with disabilities or not being born at all. Not all grief is the same, but I remember clearly the horrible feeling when your world falls away and you are lost, so utterly lost, with no ground left to walk on. I have been there and that is not what I am feeling right now. My grief is old and familiar, and I can deal.

So, back at the restaurant, the rest of us are ready to go and still waiting for Oscar. Ruby and Abe get up to say hello to a friend who is also dining out tonight. I stay at the table, w-a-i-t-i-n-g for Oscar who is carefully separating the 3rd ring of the onion and preparing to eat it, one painfully small bite at a time. He obviously hates the taste of it but he is compelled to finish it anyway. That's Prader-Willi syndrome for you! I don't know why, but I just laugh. "Oscar, you're not REALLY going to eat that whole onion, are you?" He looks up, he laughs too, and puts the 3rd ring down. "No", he says, smiling.

There is hope after all, and I am grateful.

Wednesday, March 4, 2009

Inspecting the Pieces

It hit me today that I am going through another cycle of grief. I don't know what triggered it, or when it started. It's subtle at first - I pull inward. I talk less to the other parents at pick-up. I reach out less to my friends. It feels like work to smile. I have a shorter fuse. Finally it occurred to me that I'm grieving PWS again, and this time it's the food.

People with PWS are never full and their thoughts are often centered on food. They can't eat as many calories as a typical person either, and are at serious risk of dying if they get too much food. When we first heard about PWS I thought it was a joke. I kept asking who made up this horrible disorder. Always hungry? Eating from garbage cans? Locked refrigerators? Come ON.

It doesn't start overnight. Or at least not for Oscar. It's been a gradual process. We put lots of measures in place early to keep Oscar safe and give him the best chance of success. We eat healthily. We follow a routine and stick to it. We do everything we can and it won't be enough.

Lately, Oscar can't play while I am making dinner because he is so distracted by the food and the thoughts of what he will get on his plate. He sits on the couch in the next room and pretends not to be watching me slice carrots, but he is. He doesn't hear me ask him to wash his hands for dinner because he is looking into the pots. At the table he uses his finger to get every last morsel and hides his hand when I glance in his direction. He drinks his salad dressing. I have to figure out food for every situation. I dread Valentine's Day and Halloween, and parties. I am always watching, planning, smoothing, explaining.

And Abe! Abe waits till Oscar is napping to have his snack. He knows how to use the magnetic locks we have on our cabinets. He helps me cook only when Oscar is sleeping, and he points to his choice on restaurant menus rather than stating aloud what he wants. He chooses salad over fries some of the time.

I did laugh today, which is a good sign. As I was driving through the rain to pick Ruby up from school I remembered when Paul and I started grief therapy. Oscar was about 6 weeks old and I had finally realized that the doctors couldn't make PWS or its symptoms go away. I thought, though, that with a session or two of therapy, we'd be over the grief and the pain, and able to move forward in our new life with Oscar. I find that so funny now. I was so naive! The therapy was extraordinarily helpful, but the work is hard and the grief doesn't ever go away. You acknowledge it, you find space for it, and eventually you learn to live alongside it. Sometimes you are even proud of it because of what you have learned about yourself along the way.

But occasionally you need to take it out and pull it apart and inspect each little piece again. I think that's where I am now. I'm looking at the pieces of my Prader-Willi grief, paying extra attention to the food aspect. I hope that I can wrap it up soon and put it all back in that space I carved out long ago. I'm tired of grieving. It gets old.