SUNDOWN
April 2, 2015

I turned on the car recently and Sundown was just starting to play on the radio. I had a moment of sadness but then realized it was a happy start to the day. Maybe my dad would be with me…Sundown is a song that reminds me of him more than any other. I’m not sure why exactly because I don’t think it was a special song to him. I just have memories of it on the radio, me sitting in back, leaning over the middle of the front seats (I was a child back when backseat belts were not used), the two of us poorly singing Sundown. I can still feel the utter happiness I felt in that moment. He’d glance at me as we sang, smiling with a twinkle of conspiracy he often shared with me.

So I turned up the radio, started off to work singing loudly and joyfully, hoping he could hear me and that he was singing along too.

He had a way of making you feel like you were about to have some sort of adventure with him. A simple trip to the grocery could become an afternoon lost wandering around comic book stores in search of a random issue he needed for his collection. A trip to a museum ended with him introducing me to my first martini(s). Gin or vodka? Dirty or dry? We wandered around downtown until we found perfection in our preferences, and an expensive cab ride home!

Dad & Me 1965

When he and my mom moved to Oregon, we’d spend hours talking on the phone, and sent lots of cards and letters. He was my best girlfriend. There was very little we left out of conversation. I’m blessed to have come to a place with him where we were so close.

Today is his birthday. He would have been seventy-two years old today. It’s funny because I can’t quite imagine the man he would be if he were still around. He died unexpectedly at fifty-six, going for a backhand shot in a tennis tournament. Not a bad way to go all in all but tragically way too soon. He probably had a smile on his face, which for some reason brings me peace.

My mom stayed in Oregon for another decade before she and her beau moved back to Los Angeles to be closer to the grandkids. I don’t know if my parents would have moved if my dad were still around. They were happy there. It’s a lovely place to live. There would be frequent visits to see the kids for certain, but whether they’d return for good, I can’t say for sure.

I’ve said before but it pains me that he couldn’t have known Cole. The two of them would be fast friends, compadres, and partners in crime. My dad would have taken it upon himself to devise all kinds of gadgets and gizmos to improve Cole’s life. He was like that. He would have been inspired to create and dream with and for Cole. No matter how much I miss him, the real tragedy is that they never met.

I miss him.

Dad 1980's

I’ll miss him every day of my life…

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WHY DO FOOLS FALL IN LOVE
April 1, 2015

I had lunch with a friend yesterday. She’s a former colleague, and now friend, and also happens to have a son who is in the 7th grade. Besides both having been our business for nearly twenty years, we also share the intrigue of raising teenage boys. While our experiences are different, we share many common values and have similar interests in raising our boys to be well rounded, kind and respectful.

Both of our boys are starting to develop interest in girls, and she shared that her son recently asked her if she believed in young love, to which she responded emphatically with a NO. I found it to be a romantic notion and if Cole were to ask me the same question, I would probably have answered YES.

I love the idea of young love. I must have fallen in love (or thought it was love) a dozen times when I was young. I think back to certain boys and can remember exactly how I felt at that time in my youth. I must have been thirteen when I fell for my first real crush. He lived in my neighborhood and was the absolute end all be all in my eyes. I used to skateboard past his house as often as I could, hoping he’d be outside so I could talk to him. I dreamed about conversations we would have and would imagine walking to school hand in hand with him. Sadly, he didn’t share my crush but we did become friends over the years, and eventually dated briefly in high school but by then my crush had faded. Still, I loved the feeling of love.

There’s innocence to what I consider young love to be. It can be unrequited, but still feel intense and all encompassing. It’s almost like your emotions are experimenting with themselves, or working out the kinks, teaching you to understand them.

I wonder what it’s like now for teenagers to crush on one another. From what I can tell from stories my teenage nieces share and from other kids, is that young relationships often take place via texting and social media, and not so much in the realm of spending real time together, getting to know each other. It seems like there’s a bit of disconnect in the way todays youth, well, connects.

I’ve asked Cole if he likes anyone special and he smiles slyly at me. I’m not sure if the sly smile is an “as if I’d tell you, mom” smile, or “why, yes, there is a cute girl in class that I like” smile. My gut is that it’s the former, and I don’t push but I’d love to be privy to his heart. I want him to feel butterflies and excitement and to be tickled when that girl talks to him. Young love is not necessarily the same as the deep, romantic love we hope to share with that special someone as adults, but I do think it’s real and magical and I believe in it.

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LOST IN THE SUPERMARKET (Series – 6)
March 24, 2015

We planted a bevy of vegetables and herbs this past weekend. My husband built some raised beds and we finally filled a couple of them, as well as some existing pots, with four different tomatoes, two squash plants, loads of different chiles and peppers, radishes, scallions, fennel and heirloom onions, plus a bed full of herbs for kitchen use. Corn, eggplant and cucumbers will follow. If all goes well, or rather, grows well, we’ll be enjoying the fruits of our efforts all summer. Just planting was inspiring to me. We enjoyed the below crostini with a garlicky herb grilled bit of chicken. It felt and tasted like Spring! The textures of crunchy bread, creamy, smooth ricotta, and fresh snap peas and herbs were amazing. The crostini alone would make a lovely light meal…

SNAP PEA CROSTINI

  1. ½ pound Sugar Snap Peas, trimmed if necessary
  2. ¼ cup fresh mint, chopped
  3. ¼ cup fresh basil, chopped
  4. 2 tablespoons olive oil
  5. Fresh cracked black pepper
  6. Maldon sea salt
  7. Baguette or other crusty bread – sliced on the diagonal in ½ inch slices
  8. Olive oil for brushing on bread to toast
  9. Fresh Ricotta cheese
  10. ¼ cup fresh chives, minced
  11. Lemon zest and juice

Brush the bread slices lightly with olive oil. Grill or toast the bread until crispy.

Mix the chives, lemon zest and 1 big squeeze of lemon juice into the ricotta cheese. Smear a generous layer of the ricotta mixture onto the toasted bread.

Blanch the sugar snap peas in boiling water for about two minutes. Plunge into ice water to stop cooking and cool the peas. Slice the peas roughly lengthwise. Mix the herbs and peas with the olive oil, a pinch of salt, and crack of black pepper. Pile the pea mixture onto the cheese topped toasts. Drizzle very lightly with olive oil and a sprinkling of Maldon sea salt. Indulge!

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BEAUTIFUL BOY
March 23, 2015

It’s National C.P. Month…Which of course has me thinking about the effect it’s had on my son’s life, and mine. I know the inclination is to feel badly for us however you’d be surprised that overall much of it’s influence in our lives has been positive. Much as I wish Cole’s life could be different for him, I can’t go into that “what if” place because ultimately, I can’t say that he’d be the beautiful, amazing boy that he is if things were different. It’s a slippery slope…

I saw a post on The Mighty where they asked people to write a letter to the diagnosis of their child, themselves, etc. I tried, but it ended up feeling like I was defining Cole by the diagnosis and he’s anything but that. In the end, the letter is to him:

It’s been almost thirteen and half years since we first met. You arrived in my life unexpectedly and immediately won my heart and shook me to the core. From the moment the doctors stopped using hours and days as markers of your future, we started to do our best to parent. We changed diapers, quickly learning to maneuver around the tubes and wires that were attached to you.

We held you as often as we could, talking to you and singing whatever songs we could recall – Lots of Beatles and Elvis Costello. You probably thought your name was Allison for a while there! Bringing you home, after five weeks in the NICU, was a huge milestone and meant lots more adjustments and routines. We learned to be adaptive and creative and most importantly we learned to accept help from others.

Doctors gave grim prognosis of what your life might look like, but you had other ideas and we were none too happy to support your every want, need and whim. You’ve thrived over the span of your short life. You’ve exceeded every expectation doctors had for you, and you have warmed the hearts of everyone who crosses your path, is touched by your smile, or delighted by your laugh.

You’ve never accepted that you had limitations. You find the way that works for you and you go for it. You lead a life not unlike what is considered typical. You’re a good student, a great friend, and an avid athlete. Though you have challenges other kids don’t face, and you’ve had to endure therapies, surgeries, and recoveries most kids don’t have to deal with, but you do it with grace and usually with the knowledge that whatever it is you’re having to do is ultimately only meant to better your life, strengthen your body, or enhance your day.

You inspire me on a daily basis and your influence has made me a kinder, more accepting and caring person. You also humble me. I understand that I too need support and that it’s not a failing to accept or need help. It’s a blessing to have people who I can count on to be present in my life, to listen to my woes and sorrows, as well celebrate in my joys. Your influence made me recognize that I value the strength that is gained in vulnerability.

To say I love you only touches on how indelible an impression you have left on me my dear boy. I am thankful for you every day and so proud to be your mom.

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SNOW (Hey Oh)
March 12, 2015

Our annual pilgrimage to Mammoth Mountain begins today with a five-hour road trip up to the Eastern Sierras. The excitement has been mounting all week and no one is more excited than Cole. He loves vacations like this where the day is filled with a defined activity – skiing all day in this case and ends with a group evening – dinner for 24 each night qualifies! Six families coming together for a weekend of snow fun!

We’re stocked up with lots of different playlists on Spotify and a pile of programming he can watch on the DVD player in the van, which will leave him pretty content during the whole drive. Cole does really well on long drives when we prepare well! The nice thing about having him enjoying a movie or favorite show is that it gives my husband and I a chance to chat uninterrupted or censored for hours – a rarity in our daily lives.

My husband is barbeque obsessed (he spent two summers perfecting his rub and baby back ribs and is now focusing on perfecting Texas style brisket) and my mom, ever supportive of his passion, forwarded a blurb about a great barbeque joint that’s on the way to Mammoth so he’s already planning our lunch. I’m hoping we can rope one or two of the other families driving up to meet us. Road trips are definitely more fun when you bump into familiar faces!

Cole is beyond excited to ski again. This will be his third year skiing with Disabled Sports Eastern Sierra (DSES), a volunteer based sports program that accommodates needs of all kinds. We’ve been inspired by there program where blind skiers are able to confidently zoom down the mountain and kids like Cole joyfully bounce over moguls in their bucket skis. It’s amazing.

The evenings are casual but festive with all of the families dining together. It’s a great end to the day and the mood is always high. It’s not hard to understand why Cole loves this kind of vacation…

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(Last year’s gaggle of happy kids)

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SCIENCE IS REAL
March 11, 2015

We visited an annual Abilities Expo this past weekend. We’ve been attending it for several years and are always inspired by the variety of offerings, enhancements, technological advances, creations and tools, all designed to promote better accessibility and mobility and to enhance the lives of those with disabilities and challenges.

This is one of my most favorite things we encountered at the Expo:

FullSizeRender

Such a simple idea yet it’s just new to the market. Yes, there are similar things available but this simple bit of stretchy, strong, pliable plastic can get wet, comes in a variety of sizes and can provide support to hands or fingers trying to grip any number of things. They’re not yet available for retail but we lucked out and were gifted with a couple at the expo.

Cole is excited to cook with them. They will help him grip spoons and spatulas and even a knife (with my assistance too on the knife), allowing him to stir, flip and cut with better precision and accuracy. They’ll be great for art projects and school projects and fun things like banging drums and waving magic wands!

I plan to share them with our school, keep a couple in his backpack, my purse, the car, and at home. I’m sure as we get to using them, we’ll come up with countless ways in which they can improve his grip, hold and management of all sorts of things. I’m beyond excited about the EazyHold bands! (I’ll take some photos of Cole using them when we get started.)

We also saw, and were impressed by, a couple of test cars with rear wheelchair lifts. (We are firm believers in the rear lift!) We have a mini-van that’s been converted to include the rear lift and still has room for two additional passengers with Cole planted right in the middle. It was a life changing purchase for all of us. Although, now that we’ve seen the car with a rear conversion, we’re rethinking our next one! It would be nice to have a smaller vehicle…

We bought Cole’s Chill Out Chair at this expo several years ago (we are, in fact, into our second Chill Out Chair). The excitement of finding a seat that doesn’t have straps or look particularly therapeutic made that year’s visit to the expo worth it. That Blue Chair totally changed Cole’s home routine and comfort.   We bought an adaptive bicycle for him one year too. He used to ride it up and down our sidewalk with a gleeful smile as he’d try to run us over.

The expo is a great way to learn about new things. It’s inspiring to see what’s out there and what’s coming next.

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EVER CHANGING MOODS
March 10, 2015

I know teenage hormones are all over the place. For months we’ve had aggressive, angry teen inhabiting my sweet son. Eye rolling, sneering and an overwhelming desire to be away from his parents as much as possible. Sadly, a lot of the negativity has been directed at my poor husband, likely because he’s the one who is around Cole more during the week and therefore gets the brunt of his frustration that I’m not home as early. It’s disconcerting, but highly typical and seems to be somewhat commonplace amongst our peers.

Thankfully, a corner seems to have been turned this past week. Our boy is back to his sweet self. He’s been more tolerant and gentler of late with consistency. Not sure if it’s the hormones balancing a bit or he’s realized that the negative behavior is unproductive or he’s simply super excited about our upcoming ski trip. They all hold some validity and maybe all contribute to his mood change but honestly, I don’t care why. I’m just relieved to have things calmer and more relaxed within our little nest.

I know the swings will continue for some time while he’s moving through puberty, growing and developing, and I’m content to embrace my darling teen during these moments of calm. Teenage angst is familiar to me and I can cope with the swinging moods but I wish I could bestow my wisdom and experience upon him to help him understand that the aggressive angry behavior isn’t going to get him anywhere but hanging out in his room alone. He doesn’t care that I’ve been there alreadyEVER

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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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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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