Sunday, February 22, 2009

I take pictures of my lattes

Yes, that's right. Why wouldn't I? Isn't this the most beautiful latte you've ever seen? A single rose etched into my decaf extra foamy. I actually pondered for quite a while whether I could add sugar and stir. So, stalling, I took a picture. But actually it was more than just the physical beauty of this latte that prompted me to capture it on my's also about timing and community and kind gestures.

I remember the day I ordered this latte -- I was exhausted and discouraged. It was yet another week of too many educational meetings and doctor appointments, one on top of the other. Thanks to my iphone sending out reminders, I was able to remember where to go and when. Typically it is Oscar, sometimes Ruby, and now Abe that I am carting around to specialists. But this particular week most of the medical appointments were for me since, as it turns out, having a child with special needs is stressful (duh!) and stress really does lead to medical issues. (I really never thought this would happen to me because I am strong, whatever that means, and anyway the stress is all in my head, right?)

Wrong. Very wrong. Since Oscar was born, I've had my fair share of stress related issues. The scariest was the six months of dizziness I endured in 2007. I constantly felt like I was on a small boat rocking in high seas. My vertigo was exacerbated by a plane trip to Hawaii, making me feel crazy and unsettled for the entire 10 day vacation that I sorely needed. After seeing a whole mess of specialists over a 5 month period, a neurologist finally prescribed vestibular exercises to strengthen my inner ear. It actually worked-but not before the anxiety over the dizziness and it's cause (brain tumor?, MS?...) led me to near panic attacks and a diagnosis of "major depressive disorder". Of course, then I had to get help with that. More specialists, some medication, yuck.

The dizziness is gone now, and the anxiety and depression well-managed, but still, in the past year I have had more biopsies, ultrasounds, and MRIs than I can count. I now have my very own medical binder, divided by specialty, just like Oscar's. Thankfully all the tests have been negative, and aside from a 2 inch scar on my right breast, I am physically unscathed. However, there has been an emotional toll. I am so tired of medical issues running my life as they have been for 8 years now. At times I have wondered if I am making this all up. Am I hyper-vigilant and seeking medical consultation when none is warranted? No, yes...but, no. Am I afraid of being caught unprepared again as I was with Oscar's diagnosis? Perhaps, but is that so bad?

So that is how I was feeling that gray day in December when the kind barista at Cafe Roma on College handed me this beautiful latte. I felt so grateful, and cared for, in that anonymous sort of way. Maybe he recognized me? I am an occasional customer, but usually, if I have time to treat myself to a latte, it is a high point in my day so I am smiley and chipper. But not that day -instead I was flat, glum, and slow, pondering my seemingly pathetic life and the fact that I have more doctors and therapists in my contacts than actual friends. Enter this rose, this beautiful rose. It was exactly what I needed. I took this picture because I wanted to remember not only the latte, but the moment, and how this simple gesture literally brightened my day and helped me find my balance again. I know we all have burdens, and many way more significant than mine. But we as a community (virtual and actual) really can look out for one another in small but important ways as we face our individual challenges.

Since then, the barista on College and his pal at the Cafe Roma on Shattuck have treated me to quite a few beauties and cuties. None will ever match that rose, but each time I get a "special" latte I am reminded of the power of a simple gesture. So I am trying to reach out to others in meaningful ways. I am trying to dwell less on the negative and more on the positive, and I am trying to see beauty in even the most difficult times...and if that means I need to get more lattes then so be it!

Here are some other lattes that made me smile. (A teddy bear, a smiley face, and in case you can't tell, the last one reads "Fake Latte" because I always order decaf.)

Monday, February 16, 2009

What made you happy today?

A few weeks ago I was talking with a mental health professional about a happiness study she'd heard about. Unfortunately, though I gave her my email, she never sent me the link to the research. The gist, from what I remember, was that if you take a few moments each day to focus on what made you happy that day, your overall sense of happiness increases, especially as you start to recognize the joy in the actual moment and not just later, upon reflection.

At at first I was skeptical that this pollyanna approach would teach the kids to tamp down emotions surrounding anything hard in their lives, but I was also intrigued. I actually do a really good job of letting the kids express their full range of feelings, so I decided perhaps this was an idea worth pursuing. So, a few nights a week, when we all happen to sit down together for a relaxing meal, we go around the table and share what made us happy that day. It's only been a few weeks, but we've stuck with it, and some neat things have happened.

First, we've actually learned a little more about each other's inner lives, goals and priorities. For me, it has been a chance to share with the kids that I have started writing a little and how happy and grounded that makes me feel. I also use the time to complement them on their kindness, or to share how much I appreciate the special time I have with them. Abe, our self-defined pre-teen, has been surprisingly revealing, especially about his peer interactions. For Oscar this has been a wonderful way to help him feel more comfortable sharing in a safe setting, something we are working on at school. And now we can't get him to stop talking -- he has so much to share. I think Ruby loves our new tradition the most -- she is often the one that reminds us. In typical Ruby style, she always attempts to control the order of sharing and time spent on each person. In the long run I think this will also benefit Ruby the most. She is fiery and quick tempered and prone to upset. Perhaps, just perhaps, focusing on the joyful moments in her day (she got to play "babies" with her best friend T.) will help her take the little disappointments (spilling a teaspoon of cold coffee on her pants) less seriously. I can always hope.

We are only a few weeks in, but I am definitely liking this addition to family time. Here are just a few things that have made me happy in the last couple days. Feel free to share yours in the comments.

1. Receiving "presents" from Ruby -- little drawings wrapped in paper with more tape than you'd use to wrap all your christmas presents.

2. Watching Oscar sing and play zampona in the recording studio. It was hard work for him, but he was such a champ and just loved the experience.

3. Hearing Abe try to relieve Oscar's anxiety over getting xrays, urine and blood draws today. I said to him privately "Abe you're so wonderful, but I want you to know I don't see this as your responsibility" He looked at me earnestly and said "But I'm his big brother, Mom. It is my responsibility", and went back to talking Oscar down. Guess what? It worked. Best blood draw EVER.

4. Paul, who desperately needed to work this afternoon, put on one of my favorite CDs for me while I was cooking. A simple way of looking out for me that I truly appreciated.

So, what made you happy today?

Wednesday, February 11, 2009

Oscar's Crushes

Oscar is my middle child. He's almost 8 and has Prader-Willi syndrome. Unlike all the awful literature predicted when he was a baby, he actually has a pretty good sense of humor.

One of my favorite ways of joking around with him is to have him repeat back the names of kids in his class so I can determine his latest crush. He's only 8, but we realized early on that he was forming these crushes. I can't use real names here, of course, but in kindergarten it was Dana. She was his reading partner, and every time he would say her name he smiled. When I caught on, I started inventing reasons to get him to use her name. Eventually, it got to the point where he couldn't say her name without giggling. And when Oscar giggles he loses muscle tone so he literally melts in a pool of laughter.

Yesterday we were at it again. He's a 2nd grader now so he's on to me. He puts on his poker face when he sees I'm starting the game. He's pretty good at keeping a straight face at first. I recite the names of a few kids from other classes first to throw him off. And then I go for it. Justine? No... Jenna? He's fighting back, we think there is a hint of a smile. Emma? No smile. Dana -- she's old news. Angie? My prime suspect -the smile is peeking out. Rosa? Here it comes. By now he's having trouble holding it together. Both corners of his mouth are curling up. We go back to Angie, and he completely loses it. He's fallen onto the bed giggling, saying "Darn it Darn it! Let me try again". But we're all laughing too hard now.

We knew it was Angie. She's gentle, funny, and patient even when Oscar is anxious, perseverating, or getting way too close and clutching his throat in an attempt to stop stuttering. Angie is actually one of several in his class that are true friends -- friends that really get him and look out for him. He knows that too. But this year, it's Angie he is smitten with. He honored her in class for being a good friend who likes to be silly with him. She told her mom that she "could almost have a crush on him." I teared up when I heard that. Oscar is a sweet kid; he's curious, earnest, kind and he admirably navigates the hefty list of challenges that come with Prader-Willi syndrome. I feel so lucky that we, and now others like Angie, found the boy in him that shines through, or around, his devastating diagnosis. I hope he feels lucky too.

Tuesday, February 10, 2009

The Gift

I'm finally ready to take the plunge and actually post on the blog I started months ago now. It seems fitting, given the theme of my blog, to start with this story, written in September.

I stayed up too late again last night....waaay too late. I think it was 1am when I roused Paul from the chair where he had drifted off hours before and dragged him to bed with me. I didn't meant to stay up so late, I never do. Last night's excuse was that I needed to prepare for Abe's 10 year old checkup at the pediatrician. I probably put it off on purpose...after all, who prepares for pediatrician appointments? But after Ruby's (and then Paul, Abe and Oscar's) diagnosis with hypophosphatasia last Spring my life had changed again. Subtly, I admit. Living in the world of Prader-Willi syndrome for the last 7+ years, I was used to dealing with a rare medical condition --research, endless specialist appointments, educating doctors and advocating for the care I felt necessary. I was used to carrying around the weight of responsibility of obtaining care, and I even had carved a little space inside to comfortably carry the grief that really never goes away when you have a child with special needs.

In some ways then, hypophosphatasia was just another long word to spell, another list of symptoms, a few new specialists and another yahoo group to join. But, I'd be lying if it wasn't more than that. I was tired...and ready for MY life to begin. Life with Oscar and PWS had reached a temporary quiet spot and I was feeling like a marathon runner approaching a finish line even though I am not naive enough to think there is such a thing as a "finish line" when it comes to raising a child with a disability, or any child, really. However, that is how I was feeling right then. I had just happily agreed to speak to a group of occupational therapy students about parenting a child with PWS. I had visions of finally starting to write about my experience as a mom of a child with special needs. I had joined a gym and thought there was a chance I'd get there 2-3 mornings a week. In other words, I was finally taking care of ME. So HPP (yes, we get another acronym too!) felt like a huge blow, and that finish line disappeared from site. Suddenly I was back at mile 17 and feeling like there was no chance I'd ever make it.

When I finally got down to it, it probably only took me an hour to review the HPP medical literature I'd abandoned since June (when Ruby's genetic test came back positive), re-read some emails from the yahoo group of people affected by HPP, and collect Abe's lab results. I came up with a list of blood tests I felt he needed now and a list of things to monitor over time. I jotted down my questions about his activity levels, his vitamins. I pulled out the journal articles I wanted to refer to. When I finally rolled into bed I commented to Paul that it was finally striking me as odd that I so often end up buried in medical information when I'm not a doctor and don't have a medical degree. I'm pretty good at it (it was me that figured out from old blood tests that Ruby was not the only one in our family affected by HPP. It was me that convinced the geneticist to do the extra blood test that would help indicate the severity of her condition), but it's not what I had chosen as my life path. I think Paul was already asleep but, I heard me say that.

I love Dr. L., I always have. She's been our pediatrician since Abe was born 10 years ago. For two years we were just a typical family of a precocious and adorable little guy. Of course things changed when Oscar was born, but she was there for us from the beginning. I'll never forget asking her in the NICU, days after Oscar was born, if she was still up for being his doctor. Oscar was lying listlessly in his hospital bassinet and we had just found out he had Prader-Willi syndrome. It was overwhelming and I knew we'd need her help. I didn't feel like I had a choice to be his mom, but in that moment it was important to me to give HER the choice to be his doctor, whatever that was going to mean. I remember her hug, I remember her telling us we had a beautiful family and, I remember feeling like she was on our team no matter what. And of course she has been. At the beginning Paul and I would bring her literature on PWS and she would help us get connected to good specialists. She always listened, she was balanced and she was thorough. She also trusted us and always, always looked out for us as a family first, disability second.

When Oscar was a few months old she let him go to Tahoe for a family vacation once his RSV had stabilized. We had a nebulizer and the phone number of the closest clinic. I know it was a little risky because she had expected him to be hospitalized just a few days before. But she saw how responsible we were and she believed in the importance of family time. A few months later we went to Italy with a 5 month old Oscar. He came down with a cold and was fussy. We guessed he had another ear infection -- probably his 5th -- one for every month of his little life. We called Dr. L from Italy and she gave us instructions on how to reconstitute the antibiotics we had brought along. She saved us a day trying to track down medical care in a foreign country. She was helping us become a family, despite PWS. The list goes on -- when Oscar was 6 I brought him to her listless and complaining of stomach pain -- a potentially life threatening condition in Prader-Willi syndrome. She asked if I wanted an ambulance to get him to the hospital. I was shaky and scared, but I insisted I was ok to drive him there. To be sure, she sent along her grown son, an intern in the pediatric office, to stay with Oscar in the ER while I parked the car. So, yeah, she's been looking out for us for many years now.

When I showed up yesterday with my medical binders and my athletic, freckle-faced 10 year old she did it again. I was about 5 minutes into my summary of where we were with HPP and what I considered to be the questions and priorities when she looked over and asked "Isn't there a doctor who knows about HPP who can do all of this?" "No, I mean yes, but he's in St. Louis", I replied. "HPP is so rare, and our specific mutation was never before identified. No one else around here really knows much about the disorder." And that's when she did it again: she took the journal articles, the family HPP history chart I'd made, she jotted down my questions and concerns and she said "Let me do this. I'll read all of this. I'll call Dr. W. in St Louis and we'll come up with a plan. Just give me a few weeks. YOU go back to being a mom."

Had she noticed how tired I was? Did she see the tears of gratitude in my eyes? I'd always brought her info on PWS and we devised a plan together, which I loved and appreciated. But this time she just took it over. I swear I saw it again then, that finish line, reappearing in the distance. Of course I'll always be there for my kids. I'll always do whatever it takes to get them what they need, but she had just given me the biggest gift...the permission and ability to concentrate on being a just a mom of three wonderful kids and, importantly, the time to start taking care of myself a little bit too. Thank you, Dr. L!