Friday, May 29, 2009

No time like the present...

I'm excited and nervous! I decided to sign up for an online summer writing class called Mother Words with Kate Hopper. "No time like the present", Paul said, when I asked his opinion.

Am I nuts? The summer is full of baseball, swimming lessons, more baseball, zoo camp, baseball tournaments, a few visitors and more baseball. So, yes, Abe will be playing A LOT of baseball this summer. I love it -- I love the kids' excitement, their hard work, their camaraderie, coaches, the families, and, of course, the games. It's a great community for our whole family. I don't want to miss a second of it.

But still, I'm going to distract myself slightly from all that baseball and also take a writing class. Have I ever mentioned that I have absolutely no writing training? Well...unless you include that time Senior year in High School, where I somehow got chosen to compete in a county-wide writing contest. In the van on the way over to the school where the competition was taking place the smart kid English teacher (not my teacher) gave us some general guidelines. "Use lots of sensory details and imagery", he said. So, I did. I remember the adrenaline rush and sitting on my knees as I crafted my piece. It was a fiction piece and it unfolded in my head faster than I could put it on paper. The experience was almost magical -- and I came in 2nd place! (The girl who won, for the record, supposedly won every competition, and is probably a very famous writer now). That was my shining moment. But that was 1986.

I don't care though. I've been wanting to write for a long time. I might as well learn HOW.

Thursday, May 21, 2009

Today's version of a daily conversation

Ruby: Mom, I'm really hungry.

Me: I know sweetie. But you just ate lunch. (about 1/2 hour ago.)

Ruby: Guess what!? We made pizza for snack at school! Not like pizza store pizza, but with a circle kind of bread. I put cheese, then sauce, then more cheese and more sauce. I made two layers!

Me: That sounds good. (calm but mentally berating myself for packing big lunches when they eat these high calorie snacks at preschool)

Ruby: And you know, we also went to the "blue room" and ate honey. I got two pretzels with honey. Not everyone got two, but I did.

Me: Hmmm. (acting neutral)

Ruby: Where are we going now?

Me: Just to the grocery store to get some things for dinner.

Ruby: What's for dinner?

Me: I think we'll have salad and bread.

Ruby: I LOVE bread. Can we have bread with thick cheese spread all over?

Me: No, not tonight, just regular bread with our salad.

Ruby: What's in the salad?

Me: Roo! (I lost my patience) Dinner is still 5 hours away! (I take a deep breath.) You don't need to worry about dinner, sweetie. I'm the mom and I can take care of the food.

Ruby: Well, when I'm a mom and I have babies I'm gonna...

Me: Gonna what, sweetie? (I'm calm again)

Ruby: I'm gonna live far away. (but she's not calm. she's hurt) I'm gonna live next to GrandMary and Grandpa (in NJ).

Me: Oh, ok. (i'm striving for unfazed)

Ruby: I'm not going to live near you.

Me: Hmmmm. (I heard somewhere that saying "Hmmm" a lot keeps kids talking)

Ruby: Can you drive me there?

At that point I burst out laughing. And poor Roo was so mad, so ashamed. She hid her face in her sleeve and wouldn't look at me. I told her I was laughing because when Daddy and I drove from NJ to CA it took us five full days. (It did take us 5 days, but of course that's not what was funny) She knew I was lying. Now I felt bad.

Ruby is always talking about food. I don't know if she is really experiencing hunger all the time or if she is just tuned into the PWS food vibe in our house. Did she learn to drink her salad dressing by copying Oscar or is she also programmed to do that?

I didn't think too much of Ruby's voracious appetite until two years ago when her linear growth slowed and her weight increased. She went from 75% height/50% weight to 35% height/95% weight. And she's stayed right around there..despite a lot of very healthy portion-controlled eating and not much access to dessert or sweets.

The hunger plus the slowed growth and metabolism just sound too much like PWS to me (it's not, we checked) and therefore gets me at my weakest place. All those horrible stories that I read in the NICU when Oscar was born about kids with PWS and the lengths they will go to for food come rushing back.

The literature made kids with PWS seem like monsters.

Eating frozen meat, digging through garbage cans for rotten leftovers, prostituting to earn money for food...

I know differently now, but I can't quite shake the images or the fears. So when Ruby perseverates about food more than her brother who actually has PWS, and we don't know why, I feel the uncertainty and fear rush in again.

I was researching her metabolism and appetite last February when one of her top baby teeth became loose. She'd already lost the bottom two. I asked the dentist if she knew of anything that could cause both premature tooth loss and metabolic issues. That's when we learned about hypophosphatasia -- we discovered the HPP while looking for something to explain her hunger and metabolism. The symptoms aren't, as it turns out, related. HPP might help explain the slowed linear growth, and certainly the lost teeth, but most kids with HPP are super picky eaters and parents in the yahoo group share ideas about how to help their kids gain weight.

Ironically, because we have a child with PWS we think we know what to do about Ruby's obsessive hunger....and yet we really don't. Ruby will live independently in the world and make her own choices about food someday. Oscar will never be in control of his food. As well as he is doing, uncontrolled access to food will put him at serious medical risk and only heighten his anxiety and behavioral challenges. But that's not the case for Ruby. At least I hope not.

So how do I raise her in this Prader-Willi household? I'm concerned about the food issues she might develop because I am restricting her now. But at four she is too young to make all the decisions.

And my gut tells me there is an imbalance of some sort causing her hunger but I don't know how to chase it down.

Meanwhile, I am saying "yes" whenever I can. I sometimes give her small treats when Oscar isn't around. I'm trying to be patient. And I'm always talking about how all of our bodies are unique and we all need different things. "Oscar's body doesn't know when he is full so I help him. Your body can tell you when you are full. You don't need to finish your food if you are full. We can save it for later." I congratulate her on good choices.

I'm doing the best I can but I wish there was someone out there that could help me navigate this tricky area.

At bedtime tonight she was cuddly and asking for lots of hugs and kisses and trying to keep me in her room as long as possible. We play the "Guess How Much I Love You" game a lot, each of us trying to outdo the other. Tonight I went with silly and said "I love you all the armpits in the world". (I know, that doesn't make sense, but we giggled hysterically anyway).

And then she said, "I love you all the way to GrandMary and Grandpa's...and back".

In these moments, the concern melts away and, with love as my guide, I trust that she will be okay.

Friday, May 15, 2009

I'm still here!

I've been quiet on my blog lately. There is just too much going on.

Some triumphs: The Los Mapaches concert was Saturday in San Francisco. All three kids performed! Abe sang out and actually moved his body to the beat. He played guitar for the first time on several numbers, drum on another. He looked so happy, so confident up there. Oscar's stage overwhelm is gone. He was "on" the whole time, and his face, while singing, emanated a beautiful mix of passion and sincerity. He led one song on stage with the bombo, helping to keep the beat for the rest of the musicians. And Ruby was a ham. She made sure each one of the 300 people in attendance noticed her as she sang, played zampona, and did the motions. What a night!

And some struggles: Oscar's IEP was also this week which is always a source of major stress for me. (Placement has historically been very very hard-fought.) This year was smooth but no one could tell me beforehand that that would be the case so of course I went through all the pre-meeting anxiety and post-meeting decompression. Abe's been having a very hard time at school. We're so sad, but also proud of him for how he has been keeping his chin up and continuing to try. I wish the last weeks of his elementary years could be sweeter but I also know that it is a gift of sorts to be ready for the next adventure. He is. I just wish he could take his 5th grade teacher with him to middle school. Oscar's stuttering is at an all-time high. He can stumble over one syllable ten times before he gets it out, his face contorted with the effort it requires. I love though that he can calmly admit that he is frustrated and I can reassure him that it will pass, because it always does. I feel blessed (and if you know me you know I rarely use that word) that he has the ability to converse so maturely. Finally, Ruby's tantrumming peaked last week to the point where Abe stood by my side and told me in a soothing voice that he had seen what happened. I was crying but I am not sure why. Because I don't always know how to help my 4 year old when she rages, or because my 10 year old can step out of his pre-teen fog and angst to validate my experience?

I am ok, just drained. PWS walk and 5th grade play this weekend on top of all the baseball games and practices that are the respite in our busy life.

Friday, May 1, 2009

Fog of Disbelief

Yesterday I visited Oscar's 2nd grade class and read a "book" I wrote about him and Prader-Willi syndrome. I write a new version each year and always include lots (and never enough) pictures of him having fun with his school friends. His wonderful teachers allotted a whole hour for the book and discussion, which really allowed us to delve deeply into the topic of Oscar, his challenges and how to support him as a friend. Oscar was not there -- we arranged for him to be with the learning specialist so the kids could speak freely.

The kids expressed such care, concern and compassion. Their questions were sweet and thoughtful. In the book I aimed to touch on things that distinguish Oscar from a typical kid. I wanted to validate their every observation and help them understand the challenges PWS presents. I was fully prepared for lots of additional observations -- things his brother points out all the time -- like "he chews with his mouth open", "he talks to himself", "his stuttering is really annoying", "he forgets to flush", "he can't run fast", "why does he get to take breaks and do less work". Nope. None of that.

These kids wanted to talk about whether Oscar was okay with me talking about him without him present. They wanted to know whether he'd like more play dates, and if he'd prefer to play "crazy chimpanzees" or "mad monkeys", games they made up because they knew the name alone would be appealing to him. They talked about ways to include him in games, even when it seemed like he wanted to play alone. His aide, his amazing aide, led this part of the discussion, allowing the kids to present their ideas and validating them, and also stretching their concept of inclusion to mean more than not excluding.

We talked about how Oscar knows he has PWS, but that we always focus on the positive. We don't say "You can't" but instead try to say "You can..." so he feels good about who he is and what he can do. One child chimed in and said, "I get it, you always put him on the bright side".

They did get it, on a very deep, and mature level. I knew, I really did, that this was a wonderful and supportive group of peers.

I knew, and yet I am still in a fog of disbelief.

Words are failing me. I cannot adequately describe how beautiful and incredible the experience was for me. I spent the remainder of the afternoon shaky and on the verge of tears. Tears of utter joy but, also, unsettling sadness. It took me a while to figure out why: It just can't get any better than this. I just can't imagine how it could.