Drip, Drip

I was so good at posting here at the beginning of January, but now it's been almost a month again without a post. I gotta blame the leaks. 

I discovered the first leak one rainy night down in our basement garage in the space under the front steps. Water pouring down both interior walls of the wedge-shaped space. Water soaking the scrap wood and pooling in the sleds we stored there. Water dripping from the boards above onto my head where I stood peering around with my headlamp on. Water seeping into the garage.

And, on the other side of the basement, there was the mysterious flood on the laundry room floor.  The rag rug I had placed in front of the washer was soaked through and the bands of sand on the newly painted green concrete marked the water's path down the slightly sloped floor toward the front wall where it just seeped out through the foundation into the yard.  That leak, it turns out, was from a blocked sewer drain that backed up into the laundry drain and resulted in a visit from a water restoration company to deal with the sewage contamination. Our local plumber sized up the situation and recommended a new sewer lateral to replace the 80-some year clay pipe sewer.  (Did I mention that it took two of these mysterious floods before we realized it was sewage and took proper precautions?)

And then last Friday night, just as friends were arriving to share a drink before whisking Abe off to the opening of a new baseball facility, I found a puddle on the kitchen floor.  The new hardwood kitchen floor.  I opened the cabinet under the sink to find the cabinet and all its contents soaked.  The new faucet is apparently leaking quite a bit.  I wonder how long that's been going on?

I didn't write much about it here, but we moved out of our house (the dilapidated castle) for two months this fall to renovate.  The house looks so much better -- we finally tiled in the shower walls and added a fan in the bathroom to help with condensation and mold on the bedroom windows.  We replaced the pink sink and pink ceramic tile floor in the kitchen and added a soothing green granite counter top.  We painted the entire house inside and out and refinished the hardwood floors.  We planed the interior doors so they actually close, we fixed a leak in the roof, we replaced the insulation in the attic, and swapped out light fixtures.

We took care of ten years of deferred maintenance -- all the projects we should have been taking care of all along but were so busy tending to Oscar's needs (and the other two kids of course) that we just let it all go.

And now we are leaking again.

I'd probably would have been better able to cope with all of this if I wasn't already dealing with my own leaky gut.  I was diagnosed late fall (hello anxiety and sleep problems and digestion issues and headaches) and have been following a rather restrictive diet. No gluten, no dairy, no yeast or any fermented food, no sugar, no potatoes or berries or eggplant or eggs or cinnamon or mace or mint or bananas.  There's more but I can't remember it all.  I'm spending a lot of time grocery shopping and cooking and there's just so little time left for everything else.

So, it's been a month of leaks.  Meanwhile I have a lot of posts stored up in my brain. Perhaps they too will leak out onto my blog in the near future!

A Glorious Day

This weekend we hiked (some of us reluctantly, the 49ers were playing!) 1.7 miles to this dark sand crescent beach in the Marin Headlands. Frothy waves crashed against the cliffs creating mini waterfalls down the lowest portion of the rock face. Blue skies, warm sun and still air had us peeling off the three extra layers any savvy northern Californian wears to the beach. We've been here before, in all seasons, and never have we had more perfect weather.

Oscar was one of the reluctant ones but he came around when I reminded him that he could hunt for semi-precious stones among the dark pebbles.

After lunch Paul and I were reading but Ruby and Abe itched for adventure.  They wanted to climb up that crack in the grassy hillside. 

We let them go.  Five minutes or so passed and I realized I could not see them. I figured I should check on them but I wasn't worried. I slowly laced up my shoes and headed across the beach to the base of the hill. 

 

I gasped when I reached the crack.  I had no idea how narrow the space. How steep and crumbly the walls.  I started climbing, and my feet slid on the rocks that covered the trail, rocks that had been pulled out of the dirt walls by previous climbers. I climbed faster - slipping, stepping - up the deep and twisty ravine, calling up on decades-old rock climbing skills to grasp tiny rocks poking out of the walls to hoist myself along.

My heart pounded. My legs shook. I worried about Ruby slipping backwards into Abe and the two of them sliding on rockfalls all the way down. Partway up the climb, the walls grew shorter and I could spot them sitting on the old military bunker looking down over the cliff. I hoped Abe knew to keep Ruby from the edges of the sheer cliffs.

Of course they were fine. But definitely not the best idea to let them hike alone.

The views from the top were breathtaking.

 

We stayed a while just breathing it in.

When I returned to the beach Oscar was eager to show me that he'd found more green and white stones among the black pebbles.

He put them in his pocket for safe-keeping and laid down on the blanket with his book, Diary of a Wimpy Kid.  He read, I read, and Ruby buried her legs in sand. 

Paul and Abe hiked to the top of the peak above the bunkers and around to the next peak.  When I squinted I could just barely make out their slender figures along the ridge before they disappeared. Later, Ruby and Paul hiked up the crack again while Oscar and I read some more and Abe ran along the shore in and out of the waves.

 

The sun edged slowly toward the horizon and still we stayed.  Oscar, who usually begs to leave the beach after an hour, was happy on this rare windless day.  I rested my head against a rock and closed my eyes and let the warm sun wash over my face. 

We considered staying on through sunset and hiking back to the car in the dark.  (If only we'd brought our headlamps and an extra snack.)

 

On our way back we stopped to take this family portrait.  That's me on the left, then Ruby (with her hat and bucket), Paul, Oscar and finally Abe.  

Our glorious day was made even more glorious by an uneventful walk back. No complaining, no whining, no requests for food. Just five hikers, holding hands, chatting, and tossing the football back and forth along the way.

Another Conversation with Oscar about PWS

Every few months Oscar and I seem to find ourselves in one of those conversations about Prader-Willi syndrome and how it affects his life.  I've largely protected him from the scary information and try to frame any limitations he might encounter in terms of what he can do, not what he cannot. 

This morning, as he cozied up in front of the heater in his jammies, I should have reminded him to get dressed for school but instead I casually asked if he'd be interested in a sleep-away camp for kids with Prader-Willi at Camp Harmon this summer.  I think that conversation would have gone fine if I had not, in the very same breath, asked his 7 year old sister if she was interested in circus camp. Oops.  

Oscar's heard all about circus camp from our babysitters who are counselors there.  They've told him about the friendships and the art projects and the circus activities and the big show.  But what he remembers most about circus camp, I finally cajoled him into telling me, is that at circus camp you get ice cream as a reward for doing the dishes. Every night. Based on that alone he has decided that circus camp is for him.

I tried to tell him that I didn't see him being interested in learning to walk a tight rope or riding a unicycle or swinging from a trapeze high off the ground. 

I tried to tell him that I know he likes art projects, but that he also likes animals and basketball and that I was thinking about a camp that had those types of activities.

I tried to tell him that the Camp Harmon was like the family camp we go to every summer except that he gets to go with friends.

With tears brimming and lips quivering he asked why he had to go to a camp with all the "Prader-Willi people".

(I spent the next several minutes lecturing him on people-first language and not calling himself or letting others call him a "Prader-Willi" while he stared at me with a stunned look on his face.) 

And then I answered his question.

"Because, sweetie, at Camp Harmon they understand Prader-Willi syndrome and they know how to keep you safe.  Even if you went to circus camp you wouldn't be able to have ice cream every night as a reward for doing the dishes. Eating all of that ice cream would be dangerous and make you sick."

He formed a little circle with his index finger and thumb and said he'd be ok with only having a tiny bit of ice cream every night.  "I wouldn't need a lot, Mom, I swear."

He calmed down only a little when I reminded him that so many of the kids he looks forward to seeing at our fundraising walks, and support group meetings, and even yesterday at a middle school he was visiting have Prader-Willi syndrome and that many of them attend this camp. He smiled when I reminded him that Emilie and David and Owen would probably be there.  And he looked maybe a little relieved when I told him he didn't have to go to camp at all -- that I was only giving him the option.

I'd like to say this conversation ended elegantly but it didn't.  When I finally stopped talking sadness overwhelmed him again and the tears flowed harder.  So I tracked down his iPod, found his favorite Green Day album and plonked the headphones on his ears.  And I hoped that the abrupt transition to something he loves would distract him enough so he could get ready for school. (It did.)

We'll revisit this conversation again soon I'm sure. As Oscar heads toward adolescence he will undoubtedly notice more differences between himself and his typical peers.  He will have more questions. There will be more tears.

I am hopeful, though, that the opportunities he will have in life will always be meaningful and satisfying, even if not exactly the same as his typical peers.  I will insist.

Wordly Wise

Of course, the day after I posted on Hopeful Parents about Oscar's recent amazing flexibility, maturity, and participation, it all fell apart.  He fell apart.  His processing speed slowed. His anxiety skyrocketed. He started asking a zillion questions in his high-pitched "emergency voice" and became increasingly inflexible about everything from socks to family outings.  By 9am on Sunday he'd already had two big tantrums and Paul and I were scheming about forcing a morning nap. 

We never know what causes these swings in behavior and function. Maybe it was the interminable plane ride home from the east coast on Thursday. Or the jet lag. Or anticipation of school starting back up. Or post-holiday blues.

So I was surprised to hear that he actually had a good first day back to school.  And even more surprised when the first thing he did today when he awoke from his nap was get started on his vocabulary homework.  He even forgot about snack.

O's class uses a 5th grade Wordly Wise vocabulary and reading comprehension workbook. It's a stretch for him, but he's keeping up far better than we'd all anticipated. Usually the first couple of exercises with the new set of words are challenging.  Until the words are ingrained in his brain (darn working memory issues!) he has a tendency to get overwhelmed and shut down.  I've been working with him on developing strategies -- like trying the words one by one until he finds the one that fits -- before overwhelm strikes.

This afternoon, though, he pulled out his workbook, grabbed a pencil, squatted on the living room floor and banged out all ten questions in his Wordly Wise in what seemed like five minutes flat. He didn't ask me any questions. And he got them all (mostly) right.

 And then he immediately asked if he could have his screen time.

(When oh when am I going to remember just how motivating screen time is and use it more strategically?)

Happy New Year!

It's been years since I sent out a holiday card. We used to have such fun creating newsletters with pictures, crosswords, jokes, and articles. One year Abe wrote a funny piece about Ruby's toddler-isms and Oscar dictated all the facts he knew about giraffes. I hope someday we'll rediscover our creativity, but until then I'm considering it a victory that I slapped this together today (with the help of Shutterfly of course).

I am hopeful about 2012 -- I am promising myself yoga, long walks up the staircases that slice through the blocks in our neighborhood, read-alouds, card games and bike rides with the kids, time for writing and creative pursuits, and (please, oh, please) a whole lot less anxiety.

Happy Happy New Year to all!

The Other Shoe (Hopeful Parents)

It's been months since I posted here, but I hope to be back soon with a really long update. In short though, my mother died in July and I just didn't feel up to posting in the months preceding and following her passing.  And then, in a fit of madness, we decided to finally take care of all the deferred maintenance on our beloved "dilapidated castle".  This fall we packed up all of our belongings, moved out, renovated our house, then moved back in. It's one of the crazier things we've done. We are still stepping around boxes and can't find the hardware for the bedroom blinds, but life goes on.  

In the meantime, I did finally post over at Hopeful Parents. (Thankfully they hadn't changed my login or revoked my privileges in my absence!)

A Rare Tuesday

It's a rare rare Tuesday -- no baseball game for Abe tonight.  No dinner with friends. No meetings about teen alcohol prevention, no science fairs or school concerts. No soccer practice or music rehearsal. And so we are home. Oscar is napping and I'm making dinner for the first time in over a week. 

Ruby made fruit salad, cubing apples and oranges and bisecting tiny frozen blueberries till her fingers turned blue. She topped the salad with sliced almonds and divided it into two bowls - one for her and one for Abe. They sat at the breakfast table and chatted and made silly sounds while I scrubbed carrots for the stew.

Then Abe tuned the little toy guitar he got when he was two and handed it to Ruby. He picked up his own guitar and they strummed together, Abe stopping every couple minutes to reposition Ruby's still chubby fingers on the frets. And now they are playing a board game. Abe is explaining the rules to her in a fake British accent and she is giggling and hopping like a frog in the orange jumper that she's wearing with purple leggings and wool socks.

I love Abe's baseball games. I love the evening sun on my face and the cheering and chatting with friends in the stands. I love watching Ruby invent ball games with other siblings or wheel around on her scooter in the adjacent basketball court. I love how Oscar cheers for his favorite players on both teams, watches the umpires and keeps track of the count.  I love rooting for Abe (who is playing with a cast on his wrist and somehow still contributing) and seeing the energy and excitement he brings to the game.  I love it all.

But I do love a quiet afternoon at home, too.

To Not Have Him (Hopeful Parents)

Another month gone by and I haven't posted a darn thing here.  As usual it is not that nothing has happened, it's that too MUCH has happened and that by the time I process one thing and start to write about it I either get interrupted or a new crisis erupts.

I will tell you that Abe broke his wrist playing baseball at a tournament and that when I saw him crouched on the field holding that limp wrist I jumped up and down on the clangy metal bleachers and screamed every swear word I know. Yep, I'm calm in a crisis.  After a couple of nerve-wracking days of uncertainty over what was broken (or not) we landed with a most fabulous hand surgeon, who thankfully did not suggest surgery, but fashioned a beautiful cast with which Abe can still play baseball. I found myself jumping up and down on a different set of clangy metal bleachers a week later when he hit a single and a triple after switching back to righty hitting (after three games of lefty bunting he decided that just wasn't his thing) wearing the cast.  It's amazing he can play at all, and believe me I asked the doctor fifteen different ways if he was sure he didn't risk further injury. 

And I'll tell you that Oscar, that same weekend, performed so beautifully with the Latin American youth ensemble Los Mapaches, leading the group onto stage confidently playing bombo, a traditional drum made from wood and sheep's skin. He sang out earnestly, played zampona, and did his best with the dances.  After the concert, a member of the adult Latin American music ensemble complimented Oscar on his bombo playing and all I could think was "he doesn't know!"  That man doesn't know that Oscar has a disability and that he worked extra hard to learn that complex beat that might have come easier to someone else. He wasn't just being nice. (If he'd complimented Oscar's dancing I'd know he was just being nice). Oscar idolizes the adult musicians and just beamed up at him emitting a barely audible "thanks".

And I'll mention that Ruby's perseverance and stamina on the soccer field is astounding me.  Before this season she liked soccer, but now she seems to love it and runs harder and longer than I thought she could.  Some parents from her old preschool formed an all-girl team this season and she's so thrilled to be with her old buddies again twice a week.  Last week, after playing for nearly 45 minutes without a goal, her team finally scored against a dominating squad.  The girls, all just 5 and 6 years old, immediately rounded into a joyful celebratory circle, red sweaty cheeks pressed together, and laughed and whirled around. I got all teary-eyed as did my good friend B, not because her daughter scored the goal, but I think because like me she saw in that spontaneous celebration how our girls are already understanding perseverance and teamwork and friendship on such deep levels.

So that's a slice of our month.

Today is my day over at Hopeful Parents. I posted an essay I'm working (or should be working on) that I adapted from a blog post here a year or so ago. 

Seeking Calm (Hopeful Parents)

I'm over at Hopeful Parents today, writing about anxiety again (and my first attempt at meditation).  I'm tired of the anxiety and I'm tired of writing about it. I figure you might be tired of reading about it too, so after I drafted that post last night I wrote a whole other, more hopeful, post about Oscar.  I'll share that here sometime this week...but the truth is the anxiety is ruling me right now, so that's what I posted after all.
 

De-lurking for Japan

Like many people I've spent the past few days reading and listening non-stop to news about Japan, and still it is all so inconceivable.  The effects of the earthquake and tsunami are utterly devastating and I think of all the people now living in fear of nuclear meltdown too and wonder how I would cope with all of that loss and uncertainty. A photo of a mom holding her young child up to be checked for radiation exposure sucked the wind out of me. 

Ruby asked a lot of questions tonight, particularly about the tsunami.  Her blue eyes grew big and round when I explained that the force and height of the water experienced in Japan's coastal areas would topple our house and push all the cars in the street around. She wanted to know how many people died and if we know any of them.  She wanted to know if anyone we know has ever even been to Japan.  She wanted to know how a tsunami starts in the first place. 

My doctor has been posting on her blog about possible radiation exposure where we live. It seems almost disrespectful to worry about some low level we might experience here but all the same I've increased our leafy green vegetables and sea vegetables to pump up our non-radioactive iodine levels.  I've heard before that most Americans are deficient in iodine but it never really seemed relevant before.  (Or, rather, so many other things seemed more urgent.)  Last night I made a lovely miso soup from homemade dashi with shitake, wakame, and kelp noodles and felt that the meal was both a tribute to the Japanese as well as the start of some protection against whatever radiation we may or may not be exposed to someday.

Two of my friends, Kate at mother words: mothers who write and Elizabeth at a moon, worn as if it had been a shell, are making a donation to the Red Cross for each reader who leaves a comment who has never left one before. I think that's a grand idea, and so I am borrowing it too.  If you are a new or infrequent commenter, leave one this time, and in a few days I will make a donation to the Red Cross.