I love your brain

SHE BLINDED ME WITH SCIENCE

April 8, 2015 - Leave a Response

A friend is in Panama City this week doing an annual pilgrimage to provide her young daughter with stem cell treatment to help her gain improvement in her strength, motor skills, tone, and more. Like Cole, her daughter has cerebral palsy. Stem cell treatments, while somewhat revolutionary are being used to help children and adults with cerebral palsy with good success. I’ve heard about it over the years but hadn’t really done any research because it seemed out of reach for whatever reasons.

It’s not a miracle treatment that will eradicate all of the damage and disability from my child but from the research I’ve been doing recently, the treatment can induce small, notable improvements in overall health, alleviation of seizures in some, better focus, stronger muscle tone and coordination. Some testimonies I read cited improved vocalization and vision as well. The stem cells help to rebuild the damaged neurons and to help the body to create new healthy pathways.

It’s impressive. And it’s expensive. Stem cell treatments are still somewhat experimental and not covered by health insurance. Most clinics doing them are based outside the US so there are also travel expenses to consider. Still, when faced with the possibility of a treatment that could improve Cole’s health and circumstances even slightly, it’s hard not want to figure out how to make it happen.

For now, I’ll continue to research and will most likely talk to some of his doctors about it. It’s hard to decipher the testimonials. Many are from parents with very young children and I know that, from our experience, Cole made huge strides on his own in the early years because he was doing so many therapies and his mind and body were naturally getting stronger as he developed and grew. However, reading some of the testimonials from older children, teens, and adults gives me cause to believe there is potential in the treatment for him.

The impact of any improvement to his health, strength, tone, and/or focus can have on a kid like Cole is huge. The smallest benefit can be impactful to his life, which makes me want to know more about it. It gives me hope. Not for myself but for the possibilities it could provide for him.

Categorized in cerebral palsy, Family Life, Life, Science and Special needs parenting
Tags: cerebral palsy, differently abled child, family life, life, parenting, Stem Cells

SUNNY AFTERNOON

April 7, 2015 - Leave a Response

Sometimes the simplest things can be so satisfying and pleasing.

This past Sunday, Cole and I had plans with my mom to do our usual weekend errands and lunch. It’s part of our weekend routine and gives us a chance to visit with my mom, something we both really enjoy, all three of us enjoy. When we called her to set up our pick up time, she mentioned she had talked to my brother and that he would be in the Valley and could join us for lunch. Fun.

When we picked her up we learned that her boyfriend would be meeting us for lunch too. Again, fun.

We made a stop at OSH and both picked up a few new veggies to plant in our gardens and then worked our way through Trader Joe’s doing my weekly shop. Mostly, I shop and she and Cole disappear, roaming the isles for their own goodies and causing mischief.

As we were packing up the car after our shop, my mom suggested we call Dan to invite him to lunch too. He accepted and we suddenly had a gaggle of family lunching with us. We just went to a local burger/dog joint that has a nice patio in the back where we three often spend long weekend lunches chatting well beyond our meal. In the same fashion, our extended group had a leisurely, sunny lunch and had a chance to catch up with one another and enjoy some family time.

A more rare treat than you would think, but coordinating schedules with three active teens between us is complicated, so we don’t all get together as often as we’d like. The afternoon was a nice reminder to be spontaneous. You never know where the day will take you.

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
Tags: cerebral palsy, differently abled child, family life, life, parenting

LOST IN THE SUPERMARKET (Series – 7)

April 3, 2015 - Leave a Response

We are a multicultural family. My husband is Jewish, and I am, well, spiritual in my own way. My brother’s family is the same, his wife and daughters are Jewish, and he’s his own guide. Multiculturalism has become so common; nearly all of our friends are too. A nice thing, besides exposing our kids to different practices, etc., is that families develop their own traditions.

One such family invited us to a potluck Passover dinner this evening. The event is being held at their new home, and while respectful of the traditions and holiday, the meal will not be entirely kosher or in keeping with the tradition. They assigned the dishes each guest would bring. We were assigned to bring chicken liver. I think traditionally it’s a chopped chicken liver dish with hard boiled egg and some other things mixed in but I’m honestly not a big fan of the most rustic versions of chicken liver pates so I made the Chicken Liver Pate from Animal’s recipe (Animal is a James Beard Award winning, top restaurant in LA that has an amazing chicken liver toast dish on their menu that I LOVE).

I had to overcome the ick factor of raw liver. I had never cooked it and am really only a fan of it in smooth, buttery rich pates. Snobbery, perhaps, but I managed to get the slimy livers into a buttery pan and cook them off without actually ever touching them!

Just let me say, it was all worth it. It was actually not as terribly as I imagined it would be and the pate came out beautifully. It tastes like Animal’s! I feel embolden! I can make pate! I scooped it into some jam jars, a couple for the party and smaller ones to share with a couple of office mates who are also fans of Animal’s dish.

Happy Passover, Good Friday, Easter…whatever you honor. It’s nearly the weekend, which pleases me!

ANIMAL’s CHICKEN LIVER TOASTS (I tripled this recipe for a party of 30 people)

1 stick, plus 2 tablespoons unsalted, grass fed butter, softened
1 pound chicken livers, trimmed
Salt
Freshly ground black pepper
1 medium red onion, diced
4 thyme sprigs
20 ¼ inch think warm baguette toasts
Extra virgin olive oil, for brushing
2 garlic cloves, peeled
Shallot Jam (recipe included)

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

In a large skillet, melt 2 tablespoons of butter. Season the livers with salt & pepper. Cook over high heat until browned, about 2 minutes per side. Set aside on a plate.

Melt 2 tablespoons of butter in the skillet. Add the onion and thyme and cook over moderate heat until the onion is translucent and softened, about ten minutes. Add the livers and cook until heated through for about 2 more minutes. Transfer to a plate to cool slightly. Discard the thyme.

In a food processor, puree the liver mixture and remaining 6 tablespoons of butter until smooth. Strain through a fine mesh sieve and season well with salt. Transfer mixture to serving bowl, jars and cover with plastic wrap pressed onto surface. Refrigerate until chilled and firm.

Spread onto the toasts and top with Shallot Jam for garnish.

SHALLOT JAM

2 tablespoons canola oil
4 large shallots, thinly sliced
¾ cup balsamic vinegar
1/3 cup light brown sugar
Pinch of salt

In a skillet, heat the oil. Add the shallots and cook over moderate heat until softened and translucent, about ten minutes. Add the vinegar and sugar and cook until thick and jam like, about five minutes. Season with salt to taste.

Categorized in cerebral palsy, Cooking, Family Life, Life and Special needs parenting
Tags: cerebral palsy, cooking, differently abled child, family life, Friendship, holidays

SUNDOWN

April 2, 2015 - One Response

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!

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.

I’ll miss him every day of my life…

Categorized in cerebral palsy, Family Life, Life, Love and Special needs parenting
Tags: cerebral palsy, differently abled child, family life, life, love, parenting

WHY DO FOOLS FALL IN LOVE

April 1, 2015 - 2 Responses

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 7^th 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.

Categorized in cerebral palsy, Family Life, Life, Love, Special needs parenting and Teenagers
Tags: cerebral palsy, differently abled child, family life, life, love, parenting

THE LAST SONG (Series – 4)

March 31, 2015 - Leave a Response

March has been a weird month. I didn’t manage to write as consistently as I had intended to. Work has been oddly busy and life in general has been wearing. We managed to plant a lovely garden filled with herbs, veggies and salad accessories like two kinds of radishes, spring onions, fennel and a pinky hued heirloom onion. The seedlings are already sprouting and everything is taking advantage of the abundance of sunshine we’ve had of late.

Baseball season also started this month. They’ve played two games, and had a haphazard picture day event already. Cole’s having fun this season and one of his close friends joined his team as well, which will make the season even better.

And Spring Break started this week. Cole’s going to camp both weeks so we can save vacation days for summer when he is scheduled to have hip surgery with a couple of months of recovery. He’s happy at camp because it’s held at his school so it doesn’t change his routine tremendously, which for Routine Boy, makes for great transition from school days to break. We’re trying to work a few fun things in during the break so he can see friends and not be entirely solo.

I can’t believe tomorrow is April!

My March song list and artists are below:

THE LAST SONG – The Foo Fighters
BEAUTIFUL DAY – U2
CATCH A WAVE – The Beach Boys
LAY YOUR HANDS ON ME – The Thompson Twins
LOST IN THE SUPERMARKET – The Clash
SMARTER THAN YOU – The Undertones
I AM THE DJ – David Bowie
EVER CHANGING MOODS – Style Council
SCIENCE IS REAL – They Might Be Giants
SNOW (HEY OH) – Red Hot Chili Peppers
HE AIN’T HEAVY, HE’S MY BROTHER – The Hollies
BEAUTIFUL BOY – John Lennon
LOST IN THE SUPERMARKET – The Clash
THE LAST SONG – Foo Fighters

Categorized in cerebral palsy, Family Life, Life and Music
Tags: cerebral palsy, differently abled child, family life, life, music

LOST IN THE SUPERMARKET (Series – 6)

March 24, 2015 - Leave a Response

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

½ pound Sugar Snap Peas, trimmed if necessary
¼ cup fresh mint, chopped
¼ cup fresh basil, chopped
2 tablespoons olive oil
Fresh cracked black pepper
Maldon sea salt
Baguette or other crusty bread – sliced on the diagonal in ½ inch slices
Olive oil for brushing on bread to toast
Fresh Ricotta cheese
¼ cup fresh chives, minced
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!

Categorized in cerebral palsy, Cooking, Family Life, Life and Special needs parenting
Tags: cerebral palsy, cooking, differently abled child, family life, life, parenting

BEAUTIFUL BOY

March 23, 2015 - 2 Responses

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.

Categorized in cerebral palsy, Family Life, Life, Special needs parenting and Wiritng
Tags: cerebral palsy, confidence, differently abled child, family life, life, parenting

HE AIN’T HEAVY, HE’S MY BROTHER

March 13, 2015 - Leave a Response

Family dynamics can often be so tricky. Each of us has our own interpretation of what is what and sadly our versions can be so vastly different leaving little room to find common ground. It’s hard to put yourself in someone else’s shoes and even harder to walk around in them.

My family has always been sort of disjointed. My brother and I have played very different roles since childhood. He was the sports hero and dutiful son, and I was, perhaps still am, the kind blunderer. As is common he was highly favored by our maternal grandfather, for whom my brother was the son he never had, and by my mother. My father and I had more of a kinship in that we both sort of floundered. Despite having many talents, neither of us ever really found our niche.

My brother and I have always had a strained relationship. On many levels we’re close, yet there’s been a long standing of contention and misunderstanding. We’re so different in our approach to life, to people, and to each other. I’ve disappointed him since we were kids. I embarrassed him in high school when I got into punk rock and changed my style to reflect the scene. I’ve never quite measured up to his successes, and have had a great many financial missteps that he sees as failings. While I eventually settled into a fairly successful career before my son was born, seeming to finally get my feet on the ground, I had to give it up to care for Cole in the early years and the absence left me with a decent job but not the dynamic career I once had. He’s been successful in the financial community, realizing early on that this was where his talents would make him soar. I’m proud of his achievements.

We do share a strong devotion to our families and both have what can be considered successful marriages. Life and marriage goes in waves but we’ve both managed to ride them out and both have raised what I consider to be pretty fabulous children. My two nieces are two of the greatest joys in my life, and definitely the sunshine in his.

Sadly, he and I still seem unable to communicate well or provide each other with the support that we both deserve. The clash in our approach to life and to each other still gets in our way and we end up reverting to anger and button pushing. It’s a cycle that’s gone on since we were kids that even at 49 (him) and 50 (me) we can’t manage to break. I wish we could learn to talk to and listen to one another in a more positive manner, and to find a way to accept and understand each other. For better or worse, we’re family and we’re stuck with each other. I just wish it could be be better…

Categorized in cerebral palsy, Family Life, Life and Special needs parenting
Tags: cerebral palsy, differently abled child, family life, life, Siblings

SNOW (Hey Oh)

March 12, 2015 - Leave a Response

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…

(Last year’s gaggle of happy kids)

Categorized in cerebral palsy, Family Life, Friendship, Life and Special needs parenting
Tags: cerebral palsy, Dance, differently abled child, family life, Friendship, life, parenting, special needs