My dear friend's husband died on Thursday. He died unexpectedly and tragically. I am grieving so deeply for her and her children and struggling with being so many miles away when I know she is in her darkest hours.
Today as I spoke with mutual friends here and one friend in her "new" hometown there, a million thoughts circled around but one image kept pushing its way back into my mind:
It's my friend in a wedding dress, surrounded by us, her deep pool of friends. She's walking somberly with us trailing behind, like bridesmaids. But instead of her train we are each carrying a heavy boulder.
If only it were so easy. If only I could step in line and carry some of this weight for her. I'd lug a huge boulder around all day, every day, if it would somehow ease her burden even just a little.
Sunday, January 24, 2010
Friday, January 22, 2010
Small Steps
My frustration levels are soaring lately. There's no single thing bugging me, just the usual million small ones nipping at me like mosquitoes on a camping trip. The overgrown woody hydrangea bushes with their dessicated flower heads taunt me as I trudge up the front steps each day, the piles of incomplete and overdue paperwork stacking up on the counters and the desk that is more a storage bin than a place I can work, the usual rain-dampened jackets, sweaty socks, and odd toys littering the house, the peeling exterior paint, the squeaky bathroom door that will not close, the bare drafty windows that with this latest storm allowed rain to squeeze through in dime-sized droplets. Each is small but the accumulation overwhelms me.
And then there is Oscar. Sweet Oscar who since my last post is lingering noticeably more on the edges of the kitchen watching me, lips parted, eyes glazed over, prepare our meals. I remind him that he needs to stay out of the kitchen and he obliges but then later stealthily moves through, peeking into open pots and on counter tops for clues to the next meal.
Sweet Oscar whose ears are so attuned to any conversation even three rooms and a blaring radio away. He cannot filter out background noise. I know this but it annoys me when he races out of his room, anxious and stuttering, repeating back jumbled pieces of a conversation he overheard. He hears us talking but gets it all wrong. He shouldn't have been listening anyway so I yell.
Sweet Oscar who plopped down into a crying w-sit right on the bayside bike trail on Saturday refusing to get on his bike. On the wings of last week's family exercise success we decided to try a bike ride this week. Oscar's initial enthusiasm -- stiff legged jumping, flapping arms and excited shrieks -- blew away with the mild bay winds by the trail, even though there were dogs there. So Paul walked with Oscar through the dog park while Abe, Ruby and I rode hard and fast on that long marsh-bordered route.
My unofficial New Year's resolution was to take small steps toward my goals (the usual -- exercise, writing, decluttering, house projects etc) each day, and stop letting the physical and mental clutter of my life weigh me down quite so much in the process. I wanted to stop obsessing about what I wasn't doing, and enjoy, or at least appreciate, what I was doing.
But it wasn't working.
By January 14th, a full two weeks in I was already in despair and on the verge of losing it. Hell I was losing it. I was short and sarcastic with the kids. Silent screams echoed in my brain and tugged on the nerves in my neck and shoulders as I guided Oscar through the door each afternoon, into the bathroom, pants down, shoes off, wait, wait, wait, wait, pee, pants up, turn, flush, turn, water, soap, bubbles, rinse, dry, to the bedroom, no the bedroom, head on pillow, question, not now, head on pillow, nap.
I argued with Abe which so rattled Ruby that she retreated to her art table to draw pictures of the two of us smiling, willing me to be happy again. All I could muster was "Not now Roo-boo, not now" as the disagreement with Abe dragged on.
Last weekend was better, filled with dear friends and wonderful food and drink. Though the daily demands did not disappear, they lost their urgency in the laughter and conversation. I remembered that we have friends who love us and enjoy our company and things are not so bad.
And, with help, I finally acknowledged, again, that our life is just more complicated because of PWS. While I long ago accepted that Oscar has PWS it seems I never really accepted the impact of having a child with a disability on our life. I work hard at this acknowledgment. Isn't everyone's life more complicated because of something? But I'm learning that not acknowledging, not truly accepting that PWS is a real burden that complicates our life, every day, just fuels my frustration and paralyzes me so that I get nothing done and become even more frustrated. I need to break that cycle.
And so I am trying. Small steps.
I beheaded the hydrangea. I cleared the basement of old toys and bikes and dropped them off at the consignment store. I filled 12 bags with clothing for Goodwill. I bought a shoe rack for the boys' shoes and cleaned the bathroom shelves. I re-organized the linen closet and finally fixed the print button on my blog. Not all at once. In short bursts over several days.
And instead of berating myself for all the things I didn't do while I was doing those things I stepped back and appreciated my work.
And then there is Oscar. Sweet Oscar who since my last post is lingering noticeably more on the edges of the kitchen watching me, lips parted, eyes glazed over, prepare our meals. I remind him that he needs to stay out of the kitchen and he obliges but then later stealthily moves through, peeking into open pots and on counter tops for clues to the next meal.
Sweet Oscar whose ears are so attuned to any conversation even three rooms and a blaring radio away. He cannot filter out background noise. I know this but it annoys me when he races out of his room, anxious and stuttering, repeating back jumbled pieces of a conversation he overheard. He hears us talking but gets it all wrong. He shouldn't have been listening anyway so I yell.
Sweet Oscar who plopped down into a crying w-sit right on the bayside bike trail on Saturday refusing to get on his bike. On the wings of last week's family exercise success we decided to try a bike ride this week. Oscar's initial enthusiasm -- stiff legged jumping, flapping arms and excited shrieks -- blew away with the mild bay winds by the trail, even though there were dogs there. So Paul walked with Oscar through the dog park while Abe, Ruby and I rode hard and fast on that long marsh-bordered route.
My unofficial New Year's resolution was to take small steps toward my goals (the usual -- exercise, writing, decluttering, house projects etc) each day, and stop letting the physical and mental clutter of my life weigh me down quite so much in the process. I wanted to stop obsessing about what I wasn't doing, and enjoy, or at least appreciate, what I was doing.
But it wasn't working.
By January 14th, a full two weeks in I was already in despair and on the verge of losing it. Hell I was losing it. I was short and sarcastic with the kids. Silent screams echoed in my brain and tugged on the nerves in my neck and shoulders as I guided Oscar through the door each afternoon, into the bathroom, pants down, shoes off, wait, wait, wait, wait, pee, pants up, turn, flush, turn, water, soap, bubbles, rinse, dry, to the bedroom, no the bedroom, head on pillow, question, not now, head on pillow, nap.
I argued with Abe which so rattled Ruby that she retreated to her art table to draw pictures of the two of us smiling, willing me to be happy again. All I could muster was "Not now Roo-boo, not now" as the disagreement with Abe dragged on.
Last weekend was better, filled with dear friends and wonderful food and drink. Though the daily demands did not disappear, they lost their urgency in the laughter and conversation. I remembered that we have friends who love us and enjoy our company and things are not so bad.
And, with help, I finally acknowledged, again, that our life is just more complicated because of PWS. While I long ago accepted that Oscar has PWS it seems I never really accepted the impact of having a child with a disability on our life. I work hard at this acknowledgment. Isn't everyone's life more complicated because of something? But I'm learning that not acknowledging, not truly accepting that PWS is a real burden that complicates our life, every day, just fuels my frustration and paralyzes me so that I get nothing done and become even more frustrated. I need to break that cycle.
And so I am trying. Small steps.
I beheaded the hydrangea. I cleared the basement of old toys and bikes and dropped them off at the consignment store. I filled 12 bags with clothing for Goodwill. I bought a shoe rack for the boys' shoes and cleaned the bathroom shelves. I re-organized the linen closet and finally fixed the print button on my blog. Not all at once. In short bursts over several days.
And instead of berating myself for all the things I didn't do while I was doing those things I stepped back and appreciated my work.
Sunday, January 10, 2010
100 Dogs
Ever since we watched The Polar Express (again) this year, Oscar has starting counting the dogs he sees each day with a tone that is reminiscent of Santa's when he shouts: The FIRST GIFT of CHRISTMAS! as he hands the young boy the jingle bell.
Whenever we leave the house, whether it be at 8am for that early morning OT appointment or not till late afternoon on one of those lazy winter break pajama days Oscar will call out: The FIRST DOG of the DAY! with the same joy and importance that Santa conveyed.
And then he keeps going...
"Mom, there's the FIFTH dog", "the 17th", etc. All day long. Every day.
Many years ago, when Oscar was only 20 months old, we attended a Prader-Willi conference in Utah. In my early hyper mode of trying to understand every nuance about PWS so I could be prepared for any possibility, I didn't shy away from the sessions geared toward families with older kids. In one such behavior session, the speaker emphasized that we can sometimes take advantage of our kids' behavioral traits, using them to our advantage. It sounded too easy, too optimistic, but another mom shared an anecdote about accidentally taking a wrong trail while hiking with her teenage son with PWS, extending the hike by several miles. While, if memory serves, exercise was very challenging for this kid, she got him to happily finish a very long hike by getting him going on his favorite topic: motorcycles. He talked about motorcycles for hours, but didn't complain about food or the long hike!
Listening to a kid perseverate about one subject for an excruciatingly long period of time, as some people with PWS are known to do, can be annoying and boring, especially when it is the same topic day after day. Some days I feel as though I am going to pull my hair out if I hear one more word on the topic du jour. And it's not just the perseveration, it's Oscar's complete inability to do anything else while perseverating. He can't get in the car and put his seatbelt on, get dressed for the day, or brush his teeth when he is perseverating. He follows me around chattering on, oblivious to my body language and everyone else's needs. Oscar will ramble on undeterred, even asking me questions, while Ruby shouts that she needs help in the bathroom or Abe is recounting a rare story from his day or while I'm trying to measure ingredients for a recipe so that we can eat dinner before bedtime. Truthfully, many times I have to tune him out, because otherwise I would probably have to run to the nearest window and scream and I don't think the neighbors would be too fond of that after a while.
Many families we know live with the constant perseveration about food. When is snack? What's for snack? Can I please have some more food now? I'm hunnnngry! Repeat.
Oscar doesn't do that very often, yet. He does perseverate about food, but in a different way. He'll talk for hours about the dairy farm he's going to have when he grows up and what vegetables he'll grow and whether to raise his cattle on grass or corn or some mix.
Oscar has a whole list of topics. Dogs are one, but thankfully that is mostly a counting thing with an occasional venture into how he is going to have dogs when he grows up and is in college.
Anyway, I was thinking about that mom and her son with PWS and that long hike today. I woke up feeling like we all needed to get outside and get some exercise together. All five of us. A rather lofty goal with our varying ages and abilities, but I remembered that there is a 2.7 mile paved loop around a local resevoir. We've done it before, though the kids were younger and even with jogging strollers and backpacks it was a struggle.
We decided to try anyway. I brought Ruby's bike but wasn't sure how we were going to keep Oscar going. Once we arrived, though, I realized it was going to work out just fine. Oscar shouted out "The FIRST DOG of the DAY!" before his feet hit the pavement. The promise of another dog (or two or three) around the next corner kept him going up and down the gentle hills, even jogging occasionally. Paul and Abe ran ahead a couple of miles and doubled back. I chased after Ruby on her bike and pushed her up some of the steeper hills. Oscar kept a steady, though slower pace, while he counted, but he never once complained. We all got exercise!
And Oscar counted 100 dogs. He saw the last one as we arrived back at the car. I don't think he'll ever tire of counting dogs. As I said to Paul, this could easily still work when he's fifteen.
Whenever we leave the house, whether it be at 8am for that early morning OT appointment or not till late afternoon on one of those lazy winter break pajama days Oscar will call out: The FIRST DOG of the DAY! with the same joy and importance that Santa conveyed.
And then he keeps going...
"Mom, there's the FIFTH dog", "the 17th", etc. All day long. Every day.
Many years ago, when Oscar was only 20 months old, we attended a Prader-Willi conference in Utah. In my early hyper mode of trying to understand every nuance about PWS so I could be prepared for any possibility, I didn't shy away from the sessions geared toward families with older kids. In one such behavior session, the speaker emphasized that we can sometimes take advantage of our kids' behavioral traits, using them to our advantage. It sounded too easy, too optimistic, but another mom shared an anecdote about accidentally taking a wrong trail while hiking with her teenage son with PWS, extending the hike by several miles. While, if memory serves, exercise was very challenging for this kid, she got him to happily finish a very long hike by getting him going on his favorite topic: motorcycles. He talked about motorcycles for hours, but didn't complain about food or the long hike!
Listening to a kid perseverate about one subject for an excruciatingly long period of time, as some people with PWS are known to do, can be annoying and boring, especially when it is the same topic day after day. Some days I feel as though I am going to pull my hair out if I hear one more word on the topic du jour. And it's not just the perseveration, it's Oscar's complete inability to do anything else while perseverating. He can't get in the car and put his seatbelt on, get dressed for the day, or brush his teeth when he is perseverating. He follows me around chattering on, oblivious to my body language and everyone else's needs. Oscar will ramble on undeterred, even asking me questions, while Ruby shouts that she needs help in the bathroom or Abe is recounting a rare story from his day or while I'm trying to measure ingredients for a recipe so that we can eat dinner before bedtime. Truthfully, many times I have to tune him out, because otherwise I would probably have to run to the nearest window and scream and I don't think the neighbors would be too fond of that after a while.
Many families we know live with the constant perseveration about food. When is snack? What's for snack? Can I please have some more food now? I'm hunnnngry! Repeat.
Oscar doesn't do that very often, yet. He does perseverate about food, but in a different way. He'll talk for hours about the dairy farm he's going to have when he grows up and what vegetables he'll grow and whether to raise his cattle on grass or corn or some mix.
Oscar has a whole list of topics. Dogs are one, but thankfully that is mostly a counting thing with an occasional venture into how he is going to have dogs when he grows up and is in college.
Anyway, I was thinking about that mom and her son with PWS and that long hike today. I woke up feeling like we all needed to get outside and get some exercise together. All five of us. A rather lofty goal with our varying ages and abilities, but I remembered that there is a 2.7 mile paved loop around a local resevoir. We've done it before, though the kids were younger and even with jogging strollers and backpacks it was a struggle.
We decided to try anyway. I brought Ruby's bike but wasn't sure how we were going to keep Oscar going. Once we arrived, though, I realized it was going to work out just fine. Oscar shouted out "The FIRST DOG of the DAY!" before his feet hit the pavement. The promise of another dog (or two or three) around the next corner kept him going up and down the gentle hills, even jogging occasionally. Paul and Abe ran ahead a couple of miles and doubled back. I chased after Ruby on her bike and pushed her up some of the steeper hills. Oscar kept a steady, though slower pace, while he counted, but he never once complained. We all got exercise!
And Oscar counted 100 dogs. He saw the last one as we arrived back at the car. I don't think he'll ever tire of counting dogs. As I said to Paul, this could easily still work when he's fifteen.
Tuesday, January 5, 2010
Three Kids and a Wedding
Winter break is over, the kids are back in school, and I finally have a moment to send out a post.
We arrived home yesterday from a quick trip to New Jersey for Elizabeth (Paul's cousin) and David's wedding. Ruby was one of three flower girls and Abe and Oscar were ring bearers.
Ruby took her cousin A's arm as they walked down the aisle. Check out those proud smiles!
Abe and Oscar handed out tissues to the guests on their way down the aisle. Oscar was a little slower but Abe waited for him so naturally, so patiently.
Elizabeth was glowing, and her dad (Uncle Mike) looked so calm!
Paul's sister Susan is a newly ordained Episcopal priest and she performed the wedding ceremony -- her very first one. She was awesome! I think I'd probably start going to (her) church if we lived closer.
Elizabeth and David make a wonderful couple and our kids just adore them. Elizabeth is holding her niece "Baby F"...the star attraction, after the bride of course.
At the reception we danced and danced and danced...till nearly midnight. The wedding party all received black converse sneakers as gifts from David and Elizabeth and wore them as their dancing shoes.
Oscar made it through the whole reception, falling asleep only toward the end. He tolerated the loud music, the tuxedo, fancy shoes, walking down the aisle and then later being introduced on the dance floor. He did it all with such ease and grace that I almost forgot that so many of these things can be hard for him, especially when he is sleep deprived. He was so thrilled, so honored, to be part of the wedding that he happily went along with all that was asked. He didn't want to dance much, and that was ok, but I got him to play drums with his butter knife to some of the more rockin' songs.
It was a wonderful wedding!
Oscar made it through the whole reception, falling asleep only toward the end. He tolerated the loud music, the tuxedo, fancy shoes, walking down the aisle and then later being introduced on the dance floor. He did it all with such ease and grace that I almost forgot that so many of these things can be hard for him, especially when he is sleep deprived. He was so thrilled, so honored, to be part of the wedding that he happily went along with all that was asked. He didn't want to dance much, and that was ok, but I got him to play drums with his butter knife to some of the more rockin' songs.
It was a wonderful wedding!
Sunday, December 27, 2009
National Prader-Willi Awareness Month!
I just found out that the House passed HR 55 which establishes National Prader-Willi Awareness Month and encourages continued federal research.
This is HUGE -- the increased awareness will pave smoother paths for all kids with PWS as they struggle with the challenging aspects of this syndrome. Awareness has changed O's life -- but educating people is so hard. This will help Oscar, but it will really help babies yet to be born, and families who are struggling in their own schools and communities to be heard, to be taken seriously.
So I send a big thank you to all the parents, local and national PWS organizations, and legislators who obviously worked so hard to make this happen!
Here is a video of Representative Ed Royce (R-CA) presenting the bill that he co-authored with Representative Jean Harman (D-CA):
This is HUGE -- the increased awareness will pave smoother paths for all kids with PWS as they struggle with the challenging aspects of this syndrome. Awareness has changed O's life -- but educating people is so hard. This will help Oscar, but it will really help babies yet to be born, and families who are struggling in their own schools and communities to be heard, to be taken seriously.
So I send a big thank you to all the parents, local and national PWS organizations, and legislators who obviously worked so hard to make this happen!
Here is a video of Representative Ed Royce (R-CA) presenting the bill that he co-authored with Representative Jean Harman (D-CA):
Thursday, December 24, 2009
Open the DOORS!
I took the kids dress shopping in San Francisco on Tuesday. I know that sounds crazy -- three kids in a department store -- but I needed a fancy dress for Paul's cousin's wedding in NJ next week. The boys are ring bearers and will be wearing tuxes. Ruby and the other flower girls will be wearing matching black and white polka dot velveteen dresses with a red bow around the waist. After much debate Paul thankfully decided to rent a tux as well, but I was going to need something fancy too. I tried to squeeze into the black taffeta skirt I bought back in, uh, college. 1989? I shouldn't be depressed about the 6 inch gap in the zipper when I tried to get that thing on. I tossed out my velvet dresses from my professional days in the early 1990s long ago, but I bet I wouldn't have been able to coax their slim silhouettes above my knees either.
So, off into the city we went, with the promise of BART train rides and ice skating in Union Square after dress shopping. I did find a dress...one that Abe picked off the rack actually. (The kids scoured all the racks in the dress department gathering all the black dresses in my size. We collected two armloads and settled into the dressing room for a long fashion show.) It was pretty painless, if you don't count Oscar practically falling asleep on the dressing room floor and Ruby crawling underneath the doors taunting Abe and Oscar. But that's all to be expected.
With my sleeveless dress with an embroidered taffeta skirt nestled in the shopping bag we took off for Union Square for a gander at the red and gold ball decorated Christmas tree and the outdoor ice skating rink. On the walk there Abe asked me repeatedly if the ice was real -- a reasonable question because it wasn't exactly cold outside and because four years ago we went skating on plastic "ice" at a different shopping center here in northern California. It was horrible.
The ice in Union Square was real and the rink large enough but the lines wrapped around the temporary building. One line was for ticket holders -- those organized people who pre-purchased earlier that morning or online. The other sad line was for people like us -- anxious kids and exhausted parents who realized the journey through this line to buy tickets and then back through the other was a two hour ordeal. Ruby scampered up on top of the adjacent wall in her black and ivory Christmas dress while Oscar stuck to my side asking repeatedly "So are we going skating? How long is this line? When are we going to get in there?" It was the kind of anxious rapid-fire questioning that doesn't allow time for me to answer, and my answers, if not carefully crafted, can lead to higher anxiety levels. I can't think when Oscar is asking questions like that so I usually ask him to calm his body while I come up with a "plan".
The "plan" was to blow off the skating. Maybe come back over the weekend, with Daddy, with pre-purchased tickets in hand. Oscar and Ruby were on board with that plan but Abe's enthusiasm turned to a sulk and my guilt over dragging the kids all the way into the city just for dress shopping overwhelmed me. I tried to salvage the morning by suggesting we head across the street where there was rumored to be a giant gingerbread house displayed in the Westin St. Francis Hotel. The rotating "sugar castle" turned out to be so huge and so professional looking and not at all ginger-bready that none of us believed it was actually made of gingerbread until I read the sign. Twelve hundred pounds of gingerbread, 60 pounds of flour, 300 pounds of sugar, 400 hours of work...it was certainly real. When I spotted a few missing gum drops along the surrounding train tracks the kids finally believed me (and wanted a gum drop, of course.)
We spent maybe three minutes looking at that marvelous sugar castle and then started on a quest for a lunch spot. The streets were crowded with shoppers and holiday cheer seekers and it was hard to keep track of the kids. Ruby kept falling behind and I was so glad I topped her dress with her cherry red fuzzy jacket, the one with the hood and large pom pom buttons. Aside from being adorable on her it was easy to spot her little body among all the dark pants and tall boots on the sidewalks. Abe was voluntarily keeping an eye on Oscar which sometimes meant grabbing his arm and pulling him out of the way of oncoming walkers. Oscar was getting mad at Abe and Abe was frustrated with Oscar. I beckoned Abe to the side and gently told him that I could keep track of Oscar. Oscar was fine. He was keeping up ok and yes sometimes he didn't notice people walking directly into him, but he was fine.
After much more grumbling and whining we found a decent lunch spot -- a yummy mexican place where they serve warm tortillas with salsa and make guacamole right at your table. Abe's mood improved with food in his belly and I felt like I had partially salvaged the morning. After lunch we headed down to the BART station. As we went through the ticket gates we heard a train approaching and rushed down the escalator to catch it. It wasn't our train, but an eastbound train arrived on the adjacent track a few seconds later. I wasn't sure if we wanted to take that one either because I didn't know where we would have to transfer. After a second's hesitation we got on anyway. I figured that we could get off at the next stop if needed. As the doors started to close I realized that Abe had just barely jumped on the train in time, but that Oscar was still on the platform. We tried to stick our arms out to stop the doors but they closed anyway leaving me, Abe and Ruby on the train and Oscar on the platform, alone, in downtown San Francisco.
I started screaming:
Abe and I pounded frantically on the doors and I looked desperately around the BART car for an emergency lever but I'm not sure I would have left my post at the door even if I saw one. Ruby stood up on the seat and screamed in panic. I remember being worried that if the train jolted forward she would go flying. Other passengers jumped up and started yelling and banging too. Oscar was frozen. His arms were at his sides (not flapping wildly like when he is upset) and his large brown eyes were wide with fear. Someone must have found a switch, or a lever, or a call button, because after 10 seconds (you could convince me it was two hours) the doors parted and I pulled Oscar into my arms.
The other passengers fell back into their seats with relief and I huddled at the knees of my kids who had scrunched into the two cushion seat reserved for people with disabilities. Ruby kept screaming so I held her while I talked soothingly to all of them. Oscar was still somewhat frozen, but he did say "I was really scared Mom". "Of course you were sweetie, of course you were!", I replied, and I pulled him in for another hug.
Ruby was scared too, and it took her a long time to recover. She begged me to carry her on and off the trains as we transferred in Oakland, and then off again at our station. She also awoke that night with a nightmare about being left behind on the platform. She didn't want me to leave her alone in her room.
I was scared too, but my heart didn't race, my legs didn't turn to jelly. Despite my screaming and banging I was pretty calm inside. And I can't figure out why. Was it because Oscar wasn't outwardly panicked? Was it because I just couldn't believe the train would pull away leaving him there? Did I not have time to process? Or is it because we have already been through so much that this seemed small in comparison?
I do think I knew on some deep level that he would be ok, that he wouldn't try to hold onto the train as it pulled away, like Ruby might have.
I think I knew he wouldn't get on the next train that pulled into the station, like Abe might have, but that he would stay right there waiting for me.
I think I knew that we could just go one stop and then hop the next train back. We'd be back in just a few minutes, ten tops. He's nine. He would have been fine. I keep telling myself that is why I didn't panic.
And maybe I was also in a state of disbelief that I let this this happen. I should know better.
He is nine, but he has PWS and he just doesn't react quickly in these situations. I should know better.
He gets overwhelmed in crowds and new places. I should know better.
We are all fine now, even Ruby. And we've spent a lot of time talking about what to do if you get left behind on a BART platform. Not that it will ever ever happen again.
So, off into the city we went, with the promise of BART train rides and ice skating in Union Square after dress shopping. I did find a dress...one that Abe picked off the rack actually. (The kids scoured all the racks in the dress department gathering all the black dresses in my size. We collected two armloads and settled into the dressing room for a long fashion show.) It was pretty painless, if you don't count Oscar practically falling asleep on the dressing room floor and Ruby crawling underneath the doors taunting Abe and Oscar. But that's all to be expected.
With my sleeveless dress with an embroidered taffeta skirt nestled in the shopping bag we took off for Union Square for a gander at the red and gold ball decorated Christmas tree and the outdoor ice skating rink. On the walk there Abe asked me repeatedly if the ice was real -- a reasonable question because it wasn't exactly cold outside and because four years ago we went skating on plastic "ice" at a different shopping center here in northern California. It was horrible.
The ice in Union Square was real and the rink large enough but the lines wrapped around the temporary building. One line was for ticket holders -- those organized people who pre-purchased earlier that morning or online. The other sad line was for people like us -- anxious kids and exhausted parents who realized the journey through this line to buy tickets and then back through the other was a two hour ordeal. Ruby scampered up on top of the adjacent wall in her black and ivory Christmas dress while Oscar stuck to my side asking repeatedly "So are we going skating? How long is this line? When are we going to get in there?" It was the kind of anxious rapid-fire questioning that doesn't allow time for me to answer, and my answers, if not carefully crafted, can lead to higher anxiety levels. I can't think when Oscar is asking questions like that so I usually ask him to calm his body while I come up with a "plan".
The "plan" was to blow off the skating. Maybe come back over the weekend, with Daddy, with pre-purchased tickets in hand. Oscar and Ruby were on board with that plan but Abe's enthusiasm turned to a sulk and my guilt over dragging the kids all the way into the city just for dress shopping overwhelmed me. I tried to salvage the morning by suggesting we head across the street where there was rumored to be a giant gingerbread house displayed in the Westin St. Francis Hotel. The rotating "sugar castle" turned out to be so huge and so professional looking and not at all ginger-bready that none of us believed it was actually made of gingerbread until I read the sign. Twelve hundred pounds of gingerbread, 60 pounds of flour, 300 pounds of sugar, 400 hours of work...it was certainly real. When I spotted a few missing gum drops along the surrounding train tracks the kids finally believed me (and wanted a gum drop, of course.)
We spent maybe three minutes looking at that marvelous sugar castle and then started on a quest for a lunch spot. The streets were crowded with shoppers and holiday cheer seekers and it was hard to keep track of the kids. Ruby kept falling behind and I was so glad I topped her dress with her cherry red fuzzy jacket, the one with the hood and large pom pom buttons. Aside from being adorable on her it was easy to spot her little body among all the dark pants and tall boots on the sidewalks. Abe was voluntarily keeping an eye on Oscar which sometimes meant grabbing his arm and pulling him out of the way of oncoming walkers. Oscar was getting mad at Abe and Abe was frustrated with Oscar. I beckoned Abe to the side and gently told him that I could keep track of Oscar. Oscar was fine. He was keeping up ok and yes sometimes he didn't notice people walking directly into him, but he was fine.
After much more grumbling and whining we found a decent lunch spot -- a yummy mexican place where they serve warm tortillas with salsa and make guacamole right at your table. Abe's mood improved with food in his belly and I felt like I had partially salvaged the morning. After lunch we headed down to the BART station. As we went through the ticket gates we heard a train approaching and rushed down the escalator to catch it. It wasn't our train, but an eastbound train arrived on the adjacent track a few seconds later. I wasn't sure if we wanted to take that one either because I didn't know where we would have to transfer. After a second's hesitation we got on anyway. I figured that we could get off at the next stop if needed. As the doors started to close I realized that Abe had just barely jumped on the train in time, but that Oscar was still on the platform. We tried to stick our arms out to stop the doors but they closed anyway leaving me, Abe and Ruby on the train and Oscar on the platform, alone, in downtown San Francisco.
I started screaming:
"OPEN THE DOORS! OPEN THE DOORS!"
Abe and I pounded frantically on the doors and I looked desperately around the BART car for an emergency lever but I'm not sure I would have left my post at the door even if I saw one. Ruby stood up on the seat and screamed in panic. I remember being worried that if the train jolted forward she would go flying. Other passengers jumped up and started yelling and banging too. Oscar was frozen. His arms were at his sides (not flapping wildly like when he is upset) and his large brown eyes were wide with fear. Someone must have found a switch, or a lever, or a call button, because after 10 seconds (you could convince me it was two hours) the doors parted and I pulled Oscar into my arms.
The other passengers fell back into their seats with relief and I huddled at the knees of my kids who had scrunched into the two cushion seat reserved for people with disabilities. Ruby kept screaming so I held her while I talked soothingly to all of them. Oscar was still somewhat frozen, but he did say "I was really scared Mom". "Of course you were sweetie, of course you were!", I replied, and I pulled him in for another hug.
Ruby was scared too, and it took her a long time to recover. She begged me to carry her on and off the trains as we transferred in Oakland, and then off again at our station. She also awoke that night with a nightmare about being left behind on the platform. She didn't want me to leave her alone in her room.
I was scared too, but my heart didn't race, my legs didn't turn to jelly. Despite my screaming and banging I was pretty calm inside. And I can't figure out why. Was it because Oscar wasn't outwardly panicked? Was it because I just couldn't believe the train would pull away leaving him there? Did I not have time to process? Or is it because we have already been through so much that this seemed small in comparison?
I do think I knew on some deep level that he would be ok, that he wouldn't try to hold onto the train as it pulled away, like Ruby might have.
I think I knew he wouldn't get on the next train that pulled into the station, like Abe might have, but that he would stay right there waiting for me.
I think I knew that we could just go one stop and then hop the next train back. We'd be back in just a few minutes, ten tops. He's nine. He would have been fine. I keep telling myself that is why I didn't panic.
And maybe I was also in a state of disbelief that I let this this happen. I should know better.
He is nine, but he has PWS and he just doesn't react quickly in these situations. I should know better.
He gets overwhelmed in crowds and new places. I should know better.
Next time I will know better.
We are all fine now, even Ruby. And we've spent a lot of time talking about what to do if you get left behind on a BART platform. Not that it will ever ever happen again.
Thursday, December 17, 2009
Published!
This is only earthshattering because Oscar has so much trouble writing. The blank page is overwhelming and leads to lots of dawdling, yawning, and crying. When he does get started he has trouble stepping back and describing the bigger picture. His printing is tiny and he erases and erases until each word is perfect. His executive functioning delays really get in the way of organizing paragraphs and his anxiety leads to perserveration about neatness. At one point in October his two aides (job share -- not two at a time!) were joking that Oscar had finally gotten through airport security on the way back east. He was painstakingly writing about each little detail afraid to leave anything out. But at that rate he would never get to the stories he really wanted to tell.
We finally decided to take another approach. First, Ginger (one of his wonderful aides), had him dictate one of his Lake House adventures -- the day the pig escaped at the local zoo. She entered his dictation into the computer then deleted phrases so he could go back and fill in the details by himself. Brilliant! This provided a framework and got Oscar excited about writing. Next, I divided the whole trip into six separate adventures or "chapters" and typed out questions to accompany each chapter. By answering the questions Oscar was writing the story of his vacation. When we removed the questions, the chapters stood alone as separate stories in a larger piece. Oscar then went back, with our help, and expanded and added sensory details. With all of this scaffolding he fell in love with writing and developed confidence in himself as a writer.
So today he proudly sat next to his piece as parents and classmates circulated around the class reading and writing comments to the authors. About halfway through the hour he left his post to recruit more readers. A couple of times I saw him approach one of the other parents and say "So have you read my piece? It's right over there!" Lovely parents that they are, they smiled and headed towards Oscar's piece to read and leave him a comment.
I love the enthusiasm. Just love it.
Here he is, smiling proudly with Ginger.
Wednesday, December 16, 2009
Grateful
Time sure flies around the holidays...but not writing in a month has been hard. I like to put my stories down and develop them but instead they are fluttering around in my brain taking up space but losing their nuance and details. I know, I know, I should just carry that little notebook with me and jot things down but it is never satisfying enough. If I start I will want to finish and there is just so much other stuff I am supposed to be doing. "Supposed to"...a phrase I sure need less of.
In any case, as I race around town checking out all the local toy stores in between my usual medical rounds my mind keeps wandering back to a feeling of gratitude. Thanksgiving is several weeks past but still...
Every single day I'm grateful for Oscar's school (which was also Abe's and will be Ruby's), which supports and loves him, providing "just right" challenges and somehow fostering continued, even mounting, enthusiasm about school. Each morning, as he walks into the classroom, he checks the schedule on the board and has been known to jump up and down upon seeing that writer's workshop, or Native American posters, math centers or a spelling challenge is on the list for the day. The teachers, his aides, and the staff really know what they are doing and it really works for Oscar. Four years in and I still pinch myself every day. This stuff is hard for him...he's just barely (and often not) keeping up and yet he is learning and loves it.
I'm grateful for Oscar's friends who know, really know and like him. It took me a long time to believe he had friends and even when I would say it out loud there would be a big "but...." lingering on the tip of my tongue. I'm catching myself now, admitting that these kids want to play with him, are choosing to talk to him. The other day his friend Lara was supposed to come over. He hadn't seen her in 6 months because she switched schools and both kids were so excited to finally get together. The playdate ended up getting canceled (for good reasons) and both kids were devastated. Lara called on the phone instead and I could hear her enthusiastic "OSCAR!!!" booming through the phone as I stepped out of the room. The smile on Oscar's face was precious -- he said she just kept asking him question after question and he could hardly answer before she asked another, let alone ask her anything. And then there's Angie who shares Oscar love of animals and will scheme for hours with him about the zoo they're going to run when they grow up. She's patient, kind, so mature and talks to Oscar in the most matter of fact, non-alarmist way. She even orchestrated his Halloween costume, passing tips to me through her mom. I didn't know Oscar wanted to be a cow till I heard it from Angie's mom! And I can't forget Ben, his first friend at school. Ben was Oscar's de facto aide in kindergarten, before we'd convinced the school district he needed a real one. Ben is the one who nicknamed Oscar "Oskie" and now all the kids call him that, even Angie. Ben always knows what Oscar needs and can pull him into just about any social situation with his enthusiasm. Oscar knows he is safe with Ben. I think that's really it, with these kids and all the others in his class, he feels safe. Safe enough to contribute to class discussions, safe enough to do his best and not worry too much about messing up. He knows he belongs and it makes all the difference to him.
And, finally, I'm grateful for this community of bloggers and readers. I started off here a little less than a year ago and though I'm not writing nearly as much as I would like I am loving the new connections, the cyber friendships, and the wonderful writing I am reading on your sites. I am constantly moved by your stories, your struggles and your triumphs and can't believe it took me so long to get here!
So with that I'm hoping that I've ended my unintended month of silence and can get back to a more regular blogging schedule!
In any case, as I race around town checking out all the local toy stores in between my usual medical rounds my mind keeps wandering back to a feeling of gratitude. Thanksgiving is several weeks past but still...
Every single day I'm grateful for Oscar's school (which was also Abe's and will be Ruby's), which supports and loves him, providing "just right" challenges and somehow fostering continued, even mounting, enthusiasm about school. Each morning, as he walks into the classroom, he checks the schedule on the board and has been known to jump up and down upon seeing that writer's workshop, or Native American posters, math centers or a spelling challenge is on the list for the day. The teachers, his aides, and the staff really know what they are doing and it really works for Oscar. Four years in and I still pinch myself every day. This stuff is hard for him...he's just barely (and often not) keeping up and yet he is learning and loves it.
I'm grateful for Oscar's friends who know, really know and like him. It took me a long time to believe he had friends and even when I would say it out loud there would be a big "but...." lingering on the tip of my tongue. I'm catching myself now, admitting that these kids want to play with him, are choosing to talk to him. The other day his friend Lara was supposed to come over. He hadn't seen her in 6 months because she switched schools and both kids were so excited to finally get together. The playdate ended up getting canceled (for good reasons) and both kids were devastated. Lara called on the phone instead and I could hear her enthusiastic "OSCAR!!!" booming through the phone as I stepped out of the room. The smile on Oscar's face was precious -- he said she just kept asking him question after question and he could hardly answer before she asked another, let alone ask her anything. And then there's Angie who shares Oscar love of animals and will scheme for hours with him about the zoo they're going to run when they grow up. She's patient, kind, so mature and talks to Oscar in the most matter of fact, non-alarmist way. She even orchestrated his Halloween costume, passing tips to me through her mom. I didn't know Oscar wanted to be a cow till I heard it from Angie's mom! And I can't forget Ben, his first friend at school. Ben was Oscar's de facto aide in kindergarten, before we'd convinced the school district he needed a real one. Ben is the one who nicknamed Oscar "Oskie" and now all the kids call him that, even Angie. Ben always knows what Oscar needs and can pull him into just about any social situation with his enthusiasm. Oscar knows he is safe with Ben. I think that's really it, with these kids and all the others in his class, he feels safe. Safe enough to contribute to class discussions, safe enough to do his best and not worry too much about messing up. He knows he belongs and it makes all the difference to him.
And, finally, I'm grateful for this community of bloggers and readers. I started off here a little less than a year ago and though I'm not writing nearly as much as I would like I am loving the new connections, the cyber friendships, and the wonderful writing I am reading on your sites. I am constantly moved by your stories, your struggles and your triumphs and can't believe it took me so long to get here!
So with that I'm hoping that I've ended my unintended month of silence and can get back to a more regular blogging schedule!
Sunday, November 15, 2009
Birthday Eve
Oscar's birthday is tomorrow -- November 16th. He'll be nine.
I remember clearly the night before he was born. I wasn't in labor, but we were headed to the hospital anyway because I was going to be induced in the morning for reasons which aren't so clear anymore but seemed to be more about convenience than concern.
I remember sitting at our computer, awkwardly stationed in the entryway of our two bedroom bungalow, impatiently waiting for Paul to get home from work so we could leave for the hospital. The day, like today, was somewhat warm but grew dark so early as it does this time of year. I kept turning around in my swivel chair to check if the approaching headlights were Paul pulling up in our '95 green escort wagon. He finally called to say he had gotten distracted researching baby names (at work!) but he was on his way.
Paul's parents had flown in from NJ a few days earlier to stay with Abraham and even though they were incredibly familiar with our routines I'd written them thorough instructions about Abe's favorite foods, books and parks. I listed rainy day activities and kid-friendly restaurants. I'd given them the phone numbers of all of our friends, directions to his music class, and probably songs to sing at bed time. From the length and detail of the list you'd think I knew what was about to happen.
You'd think I knew they would need every last shred of that information.
You'd think I knew that I was going to spend the next night sobbing and clinging to Paul in the narrow hospital bed in the same exact room we'd elatedly shared with our newborn Abraham two years earlier. In the exact same room, but this time the baby was hooked up to monitors in the NICU a couple of floors up.
You'd think I knew I was going to spend almost every waking hour of the next two weeks in that NICU questioning every pediatric specialist and trying to nurse an inexplicably and profoundly floppy baby.
I didn't. I didn't know anything.
As far as I knew we were going to the hospital to have a healthy baby. He was going to be just like Abe. Strong. Smart. Perfect. Normal. (Ahh those words!)
I think of this evening, and about what I knew and didn't know, every time I look at this picture which was hastily snapped as we hugged Abraham goodbye and rushed off to the hospital. I call it the "before" picture.
Before Oscar. Before PWS.
Years ago this picture would cause my grief to rise with the speed and destruction of a tsunami. I'd fantasize about going back to this moment, about being innocent again, about not being burdened by disability. I don't feel sad anymore when I look at this picture. But I also don't recognize myself -- I look so young, so naive, that it's almost like I am looking at a different person.
I remember clearly the night before he was born. I wasn't in labor, but we were headed to the hospital anyway because I was going to be induced in the morning for reasons which aren't so clear anymore but seemed to be more about convenience than concern.
I remember sitting at our computer, awkwardly stationed in the entryway of our two bedroom bungalow, impatiently waiting for Paul to get home from work so we could leave for the hospital. The day, like today, was somewhat warm but grew dark so early as it does this time of year. I kept turning around in my swivel chair to check if the approaching headlights were Paul pulling up in our '95 green escort wagon. He finally called to say he had gotten distracted researching baby names (at work!) but he was on his way.
Paul's parents had flown in from NJ a few days earlier to stay with Abraham and even though they were incredibly familiar with our routines I'd written them thorough instructions about Abe's favorite foods, books and parks. I listed rainy day activities and kid-friendly restaurants. I'd given them the phone numbers of all of our friends, directions to his music class, and probably songs to sing at bed time. From the length and detail of the list you'd think I knew what was about to happen.
You'd think I knew they would need every last shred of that information.
You'd think I knew that I was going to spend the next night sobbing and clinging to Paul in the narrow hospital bed in the same exact room we'd elatedly shared with our newborn Abraham two years earlier. In the exact same room, but this time the baby was hooked up to monitors in the NICU a couple of floors up.
You'd think I knew I was going to spend almost every waking hour of the next two weeks in that NICU questioning every pediatric specialist and trying to nurse an inexplicably and profoundly floppy baby.
I didn't. I didn't know anything.
As far as I knew we were going to the hospital to have a healthy baby. He was going to be just like Abe. Strong. Smart. Perfect. Normal. (Ahh those words!)
I think of this evening, and about what I knew and didn't know, every time I look at this picture which was hastily snapped as we hugged Abraham goodbye and rushed off to the hospital. I call it the "before" picture.
Before Oscar. Before PWS.
Thursday, November 12, 2009
Overwhelm
Whenever I'm quiet here it almost always means I'm overwhelmed. I'm lacking time for reflection and writing and instead I'm speeding through the days in a fog. Last night, after I'd given Oscar his growth hormone injection and brushed my teeth, I started to put my contact lenses back in. This morning, when I dashed home between appointments to drop off a half-baked pizza for dinner I took it straight to the bathroom utterly convinced it belonged atop the white wicker hamper. With the pizza finally stored in the fridge I hopped back in the car and drove across town, right past my destination. That was the third time this week I'd lost track of where I was going and had to do a u-turn.
Overwhelm is:
Heck. I think I will do that.
Check back tomorrow for an update. Will I use sunscreen to brush my teeth? Put the milk in the cupboard? Confuse the school start time and deliver the kid 15 minutes late? Or will I add a new blooper to the list? I bet you can't wait to find out!
Overwhelm is:
- A husband in Brazil and three kids in Berkeley
- Posting an ad for a new aide and receiving 80 responses, conducting phone screenings from the car, and squeezing interviews in around 19 other commitments.
- Watching my nearly 9 year old stutter so badly his whole face contorts as he wrestles with each word
- Not having a plan for the 9 year old's birthday in 4 days.
- Reading about PWS deaths and H1N1 and deciding, still begrudgingly, to get the vaccine
- Scheduling that vaccine and three other MD appointments in one week.
- Wondering why the 11 year old has been so quiet and lethargic for three days.
- Writing a two page letter to my 5 year old's pediatrician about her obsession with food because I can't possibly explain all of the nuances of the situation with her present at tomorrow's checkup.
- Wanting to edit my workshop piece for the class anthology but knowing I'm not going to have time.
- Wondering why my hair is falling out, I've gained 10 pounds, and I'm dizzy again.
- Other things I can't write in a blog for fear of upsetting certain individuals.
- Wanting to just forget it all and crawl into bed with a good book.
Heck. I think I will do that.
Check back tomorrow for an update. Will I use sunscreen to brush my teeth? Put the milk in the cupboard? Confuse the school start time and deliver the kid 15 minutes late? Or will I add a new blooper to the list? I bet you can't wait to find out!
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