I AM THE DJ (Series – 9)
March 9, 2015

We’re getting prepared for a short road trip to Mammoth Mountain this week, which means we need some good playlists. It’s about five and half hours of driving time each way. It’s our annual pilgrimage to Mammoth…This year there are six families converging on the mountain for some skiing, hiking, and lots of fun! We’re all really excited, but no one as much as Cole. He loves skiing. Mammoth has an amazing adaptive program. He uses a bucket ski and loves to take black diamond runs with moguls and lots of speed. I can only imagine how exhilarating it must feel for him to be racing down a mountain on a sunny, clear day.

His excitement is infectious.

We’ve started watching the new season of The Voice and there have been some songs that Cole has been exposed to during the tryouts that he really liked. James Brown’s “I Feel Good” for one, which made me think it would be fun to create a playlist that has lots of Motown and 50’s and 60’s music. It’s fun car music because Cole and I both love to dance in our seats…

  1. I FEEL GOOD – James Brown
  2. WHERE DID OUR LOVE GO – The Supremes
  3. MY GIRL – The Temptations
  4. YOU ARE THE SUNSHINE OF MY LIFE – Stevie Wonder
  5. GOOD GOLLY MISS MOLLY – Little Richard
  6. ALL SHOOK UP – Elvis Presley
  7. IN THE MIDNIGHT HOUR – Wilson Pickett
  8. BE MY BABY – The Ronettes
  9. SUGAR, SUGAR – The Archies
  10. I’M A BELIEVER – The Monkees

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SMARTER THAN YOU
March 6, 2015

I read a fascinating article at TIME.com that gave science-supported tips for improving your child’s intelligence. I too believe that making a strong effort to instill confidence, healthy self-esteem and providing a happy, loving environment helps children to thrive. I attribute much of Cole’s success to my husband and I supporting his interests, challenging him mentally and physically, and immersing him in a nurturing, stimulating and accepting community.

I recommend checking out the article, as it’s quite interesting – : Ten Steps Backed By Science

The basics are as follows (and more detailed in the article):

1. Music Lessons
2. The Dumb Jock Is A Myth – Be active!
3. Don’t Read To Your Kids, Read With Them
4. Sleep Deprivation Makes Kids Stupid
5. IQ Isn’t Worth Much Without Self-Discipline
6. Learning Is An Active Process
7. Treats Can Be a Good Thing — At The Right Time
8. Happy Kids = Successful Kids
9. Peer Group Matters
10. Believe In Them

While I recognize that Intelligence isn’t the only measure of a person, it is a worthy trait to strengthen and develop. A well-rounded personality tends to be more successful in the long run. Humor, empathy, compassion, common sense, courage, integrity, and self-confidence all are necessary traits to develop as well as intelligence, though I feel like the ten expressions for supporting intelligence likewise support some of these other traits.

It’s what we put into our children that ultimately help them to become their best selves. Our modeling, our support, our example, our trust, and our faith, all impact their lives and their development.

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LOST IN THE SUPERMARKET (Series – 5)
March 5, 2015

When my husband travels it’s hard for me to motivate to cook much. I have a tendency to make a lot scrambles and random things like a bowl full of refried beans with a handful of grated cheese, eaten with a spoon, or avocado toast with tomatoes. Not really meals exactly but comfort and some nourishment. Cooking for one kind of makes me sad for some reason. However, this trip, while he’s in Austin eating some sort of bbq every day (he’s a bit of a bbq junkie), I was craving Thai food so I got a curry and some garlic rice and ended up with some left over rice so I decided to make my own Thai influenced fried rice with it:

MY PINEAPPLE FRIED RICE

1. Handful of sliced cabbage
2. One half of a small onion thinkly sliced
3. 1 Egg, beaten
4. Handful of fresh pineapple in bite sized chunks
5. One half of a zucchini, cut into ¼’ half moons
6. Handful of water chestnuts (okay, I use a whole small can because I LOVE them)
7. 1 tablespoon of grated fresh ginger
8. 1 cup left over garlic rice
9. Splash of soy sauce
10. Splash of fish sauce
11. ½ tsp toasted sesame oil
12. ¼ cup fresh cilantro
13. ½ cup thinly sliced scallions
14. handful of toasted cashews
15. Squeeze of fresh lime juice

Heat a small amount of oil in a non-stick skillet. Add the onions, cabbage, zucchini and water chestnuts and cook until the onions are translucent and the other veggies are slightly soft. Remove from pan, and scramble the egg. Remove the scrambled egg and add the rice with the fresh ginger, soy and fish sauces and sesame oil. Toss together and return the veggies to the pan. Add the pineapple, scallions, cashews, cilantro and egg to the pan and mix well. Squeeze a bit of lime over the top and indulge.

The fact of the matter is, you can use any veggies you have around and can also include a protein if you want. It’s one of those dishes that is so simple but comforting and healthy.

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LAY YOUR HANDS ON ME
March 4, 2015

He has beautiful hands. They look like mine. I don’t often see myself in his face but I see my hands in his. Long, strong fingers and a rectangular shaped palm. They look capable and lithe. But they don’t serve him well.

I sometimes catch him watching me do things with my hands with a curiosity and intent. He pays attention as I chop or dice. He watches me fold laundry, turn pages, and brush his hair back from his eyes when it’s longer and floppy with curl. I find myself wondering what he’s thinking as watches how able my hands are. It’s one of those thoughts that always leave me sad.

I can’t imagine not having good use of my hands. He’s never had it so I accept that it’s what he knows but I cannot reconcile it with what he sees. It’s a conversation I wish I could have with him. I can’t help but wonder how he copes with grace and dignity. I admire his patience and get so much joy when he endeavors to hold my hand in his or when he strokes my back if it’s turned from him. He tries to stroke my cheeks when we’re snuggled up closely, mimicking the loving touch I often bestow upon his soft cheeks. His touch is not as gentle but the sentiment is so endearing that it feels like the sweetest, softest stroke.

Sometimes when he’s sleepy and the cat is curled up next to him, I catch him gently moving his fingers over Charlie. Charlie knows his touch is not quite gentle, but he too, after years of knowing the boy, knows that there’s love behind the pawing and he purrs contentedly, snuggled up against his favorite person. It’s the one of the dearest friendships.

I wish, I wish a great many things, but today, I wish he had more control and use of his beautiful hands. I wish he could easily run his hands through his hair, or grab a book, or push a button, or easily hold my hand…

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CATCH A WAVE
March 3, 2015

I resigned from my post as Secretary of the Board of Directors of THERAsurf yesterday, a
sad day for me.

THERAsurf is a non-profit organization whose mission is to give children with special needs, all needs including physical, an opportunity to experience the therapeutic benefits of the ocean by taking them into the water and up onto the waves. My son Cole had wanted to surf since he was a tot and when I met Kim, one of the two founders, we were able to make that dream a reality. He’s been surfing for many summers now and his love for the ocean has not waivered.

I got involved because it’s a truly special organization. There are other terrific organizations that do similar things, but often will not take kids with physical needs. It takes a special breed of surfer to ride waves supporting a child who needs more than just handholding. THERAsurf also really focuses on getting to know the children and to making the kids and their families feel comfortable, safe, and welcome at the beach and in the ocean. It’s their hands on approach that really makes it stand out.

With Cole’s surgery looming in early summer, I felt like I couldn’t be an active participant and board member this year. Work has become really busy and life in general busier now that my husband is traveling much more. The organization deserves to have someone who can provide attention, time and care to the position. Sadly, I feel like I can’t be that person right now. I hope to be able to do some work from the sidelines because I dearly love the organization and I love what I’ve witness in the kids who have experienced a surf day with us.

There’s nothing quite like seeing a child who cannot walk, gleefully riding waves. The confidence and self-esteem levels rise into the clouds and their families watching from the shore swell with pride. I’ve seen many a seasoned surfer brought to tears watching the kids enjoy something they too are passionate about. It’s a day unlike any other and I’m glad that I could be part of the magic…

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BEAUTIFUL DAY
March 2, 2015

We had a rainy Sunday so Cole and I took advantage of a break in the rain and ran a couple of errands (only places with underground parking in case the rain returned), and then spent the afternoon nestled in our warm little house goofing around together. My husband is in Austin, TX for a conference so we’re on our own again. We had him home for a few days after his trip to Wales, but he left again Saturday before we woke up.

Cole and I did a little cooking, laundry, and started working on an art project. Then he, in true teen form, wanted to spend some time alone his room watching a movie on his own. I still marvel at this development, with him wanting to have time on his own, but I’ve come to enjoy it myself. It gave me a chance to do a little straightening up and to paint my toes (without the boys feigning poisoning from the smell!).

We had a few conversations about the upcoming surgery and he seems to be okay with it. He shared with me that he does feel twinges of pain in his left hop, the one that’s completely dislocated, and seemed relieved that it could be fixed. I don’t know how well he remembers the last surgery a few year ago. I think once the casts came off, we all put it behind us, quickly turning the focus to getting back into walking and standing.

Now, as we contemplate this next surgery, some of it is coming back to me and I’m working on trying to put things into place to make the summer go a smoothly as possible. Both my husband and I will try to work from home part of the time, and we’ll need support as well. We also want to line up some fun things for Cole so that he’s not just relegated to watching TV. It’s tough because he can’t ride in a car, sit in chairs, or be easily carried about when he’s casted from hip to toe with the dratted bar between the ankles. The situation calls for creative thinking!

We’ve got a few months…time that will fly…but this time we know what to expect and I fully intend to be prepared for anything, and to make it as easy on Cole as I possibly can.

His big focus is our upcoming ski trip. It’s the third year we’re converging on Mammoth Mountain for a family ski weekend. This year there are 24 of us going. Six families! Cole’s so excited to race down the mountain and to spend evenings with friends. He really loves the thrill of skiing and the Disabled Sports Eastern Sierra has a fantastic adaptive ski program with volunteers willing to take him to the top of the mountain so they can zoom back down. I’m glad he choses to focus on the positive things and now dwell on something that could be frightening or upsetting.
He’s a pretty reasonable, practical kid. Oh, and amazing!

I love having quiet days with the boy. The two of us seem to share the same sensibility about weekends and rainy days.

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THE LAST SONG (Series – 3)
March 1, 2015

February seemed to fly by. It started out with Cole and I having the flu for a full week, most of which my husband missed due to travel, which was probably a good thing since he didn’t catch it too. I felt so poorly that even looking at the computer made me tired and worn. Not a lot of writing this month. I feel it when I don’t have the outlet, but sometimes life just give me the luxury of time. He missed our big school fundraiser too. CHIMEapalooza. It’s a variety show of sort themed around inclusion. This years proper theme was “this is how we do it”. I shared Dan’s piece earlier this month. Tom Morello was the big hit. He came and sang a couple of folk songs, including This Land is My Land backed by lots of our kids, Cole included (he’s a big fan of Mr. Morello!). It was a great night celebrating our school and the amazing CHIME community.

February’s song list and artists are below:

1. THE LAST SONG – The Foo Fighters
2. DON’T WORRY BABY – The Beach Boys
3. SICK AS A DOG – Areosmith
4. I AM THE DJ – David Bowie
5. LOST IN THE SUPERMARKET – The Clash
6. CIRCLES – Soul Coughing
7. I STILL REMEMBER – Gary Numan
8. I WANT ANSWERS – House of Freaks
9. RAININ’ IN MY HEART – Slim Harpo
10. SEE ME, FEEL ME – The Who

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SEE ME, FEEL ME
February 23, 2015

My husband tends to keep things close to the vest. He’s not as openly effusive as I am and he doesn’t readily share his thoughts about our family life, preferring to keep them private. We’re different that way. I think he internalizes things a bit too much, and he thinks I share too much – somewhere there’s a balance and it seems we both have different needs in terms of the kind of support we want from beyond our family of three. Strangely, despite the disparity in our coping, it works. We always have each other. In a rare share, he wrote the below piece for a fundraiser our school puts on each year. Sadly, he was in Wales visiting family so he missed the reading. Much of the audience was brought to tears and it was well read by one of other dads, who, besides being a talented orator, also completely related to the experience which brought a great deal of heart to his reading. I’m sharing with permission…

As written by my husband, and read by Benjamin Bratt at our annual CHIMEapalooza Event:

If you saw my family walking through a mall when my son was a baby, we looked just like any other family (my Hollywood good looks could be distracting, but otherwise we looked like your typical family.) We had the stroller and the packed diaper bag, but if you rifled through it you might see syringes and gravity bags for tube feedings next to the wipes and cloths.

As my son got older and outgrew the stroller, our outward profile changed, a bright orange wheelchair replaced the stroller, and friendly smiles were replaced with odd stares as we walked through the mall. It seems the general public is not accustomed to seeing children in wheelchairs out and about. Kids were generally curious and often asked questions, “What happened to him?”, “Why is in a wheelchair?”. To this my wife would smile at them, sharing “This is Cole. He’s four. How old are you?”, or explaining “Cole’s muscles work differently than yours and needs the wheelchair to help him get around.”, or “He understands everything that you are asking, so you can talk to him and you’ll see his answer with smiles.”. And on cue, Cole would flash is light-up-the-planet smile, and make a friend.

Yep, kids were a breeze. More often, adults would lock gaze on him and practically walk into a pole, mouth agape, like they couldn’t figure out how a kid in a wheelchair managed to find his way out of the house. For me, still wading through the newness of parenthood and the rawness of my own fears for Cole’s future, their judgmental stares caused me to try to protect my family by glaring back at them in my attempt to communicate to them that their stares hurt. They made us feel somehow less than, not welcome in public, and so much worse. I raged inside because I wanted to protect my boy from that feeling. It broke my heart to have people look at him like that with so much intensity, but actually not see him at all. Not see the bright, funny, beautiful, kind, open child that was sitting right in front of them.

Over time it just ground me down, having to summon that glare, giving so much power to the confused and small-minded reactions of passers by. Simultaneously Cole started the CHIME infant toddler, and then the lab pre-school, and finally CHIME Charter. We became part of welcoming community so much bigger than our little family, our tribe as my wife calls it. I learned over time that no matter what or particulars, we all face challenges and we all feel the weight of our hopes and dreams for our children. Most importantly, everyone has good days and bad days.

And something else changed. When I caught those stares, I started to forget to glare back and instead smiled. If they continued to stared at me like they couldn’t process what we are, I would smile just like my son taught me to. My smile is not as open as his, not as warm or as full of life, but I do my best. Plus, now I say hi to everyone I pass and I hope that my smile and my hello communicate at least a sliver of, “Hi. We like the mall, maybe more than we should and we are pretty happy to be here today. We may not be exactly like you, but we are not so different either. We hope you have a good day, and we hope that this is a good day for us too. Oh, and hopefully I’ll find a cool sweater – on sale!”

Dan
Father of Cole in 7th grade

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RAININ’ IN MY HEART
February 18, 2015

The past few days kind of took the wind out of my sails.

We were scheduled to have a neurology appointment last Friday, which was confirmed by robocall from CHLA on Wednesday. We arrived on time, checked in, sat for a while, and then Cole was called for the usual weigh in, temperature, blood pressure intake and we were then led into an exam room. We again sat for a bit until someone came in to inform us that our doctor doesn’t work on Fridays anymore. She changed her day. They had left a message at our home mid-Friday morning. Not particularly useful since my husband and I both work, and neither one of us checks the home messages until we arrive back at home at the end of a weekday. Why do all of the forms ask for alternative phone numbers if they don’t use them? Mind blowing…

So they kindly gave us the first open appointment, Tuesday, her new day, at 12:15. We accepted the appointment. Sadly, having missed half of a day at work Friday, I couldn’t attend this time. We also had a morning orthopedist appointment, which I did attend. So no school or work for the boys. Frustrating but both necessary appointments.

The orthopedist appointment left us with hip repair/replacement surgery on the books for June, along with some other smaller surgical procedures that will leave Cole stronger and better able to bear weight, walk and sit more comfortably. This endgame the most important thing to remember during the six or so weeks of full leg casts with a bar between the ankles during the summer. This will be the second “bummer summer” Cole’s had in four years. He had similar surgery the summer before 4th grade.

Oh how I wish I could spare him the surgery and recovery. The first couple of weeks are the worse in terms of managing pain and finding the best ways to maneuver the boy with his casts and bar around the house and keeping him comfortable. Then the boredom starts to set in. Once he’s feeling better and off pain meds, the trick then becomes to find ways to keep a sedentary him entertained.

The neurology appointment happened, and despite videoing some of his seizure activity, it turns out that there’s not much that can be done. We can change medication to something that has more significant side effects, including potential liver and pancreas damage (so regular blood work) or contemplate an implant device that can be effective at calming seizure activity, but takes up to two years to get there, or leave him on his current medication. Given the now upcoming surgery, my vote goes to status quo. It doesn’t sound like the other options are better at the moment so my instinct is to wait until the orthopedic event is over and then get more into the brain activity.

Can someone just tell me when enough is enough for this boy? He’s been through so much, and takes it all in stride. It would be nice if something just went easily for him sometimes.

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I WANT ANSWERS
February 13, 2015

I woke around 5 am this morning to Cole having a seizure in his sleep. It’s unusual for him to have seizures in his sleep but this is the third one this week. Oddly, we’re seeing his neurologist this afternoon to discuss the escalation of his awake seizures, and now the nighttime ones too.

I don’t know what effect puberty, hormones or growth have on the seizures but I notice them increase when he’s having a growth spurt as well as now that he’s hit puberty. They’ve changed in their expression too. It’s unsettling to say the least. In my head I know that they’re relatively harmless, and that he has little to no awareness of them. To witness them, however, is a bit unsettling. It also kills me that he has to experience them.

While he may not be aware of them while they’re occurring, he does often have after effects that linger, which I think he must sense. His color fades completely, and sometimes takes a bit of time for the flush to return his cheeks. He sometimes has mild after shocks, shakes and shivers, and he’s often dazed just following a seizure. My tendency is to continue whatever we were doing or saying so that he doesn’t spend time thinking about the cause for a lull. I don’t know if it makes sense but in my mind it does. I generally just feel helpless that I can’t make them go away.

Most of the medications for seizures have a lot of nasty side effects, including liver damage. He’s been on a medication that has few, and of those few, where he seems not to experience any. But it’s not working that well now and my understanding is that simply raising the dosage ceases to work after a time, and we may be at that time. I worry that we may have to start considering alternatives, most of which are not all that great.

It’s reassuring knowing we might have some answers or insight today. The way my mind plays, the layers of what ifs pile upon each other and start to melt into one big fright. I want a little peace for that beautiful brain of Cole’s. And for mine too.

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