CONNECTION (The Rolling Stones – also Eddie & The Subtitles did a good cover)
September 26, 2018

I took a basic watsu training class this past weekend, spending the better part of Saturday and Sunday in a 95-degree shallow pool with five other women, who were also taking the course.  I didn’t know much about watsu, other than Cole’s aquatic therapist was also learning it and thought it would be useful for me to learn the basics, so I could use it to help stretch and relax Cole at home in our pool.  I love water, and I love learning new things – especially when it’s something that can help Cole.


I nervously showed up Saturday and met the others.  Three were women who were already in the aquatic therapy business, wanting to expand their practices and knowledge, one was a mom, who is considering a watsu practice when her four kids are all in middle and high school, and me.  We were joined on Sunday by a woman who does energy work already and has already completed about her watsu training.

The first half hour we learned about watsu and its benefits.  Watsu is a form of aquatic therapy that combines muscle stretching, joint mobilization, and shiatsu massage.  It’s done in chest deep warm water, where the “receiver” is continuously supported by the “giver” (or therapist) while back-floating.  The receiver is rhythmically and passively cradled, moved, stretched and massaged by the giver and water.  Watsu promotes deep relaxation and, in my experience, euphoria.

After the basic introduction we all got in the pool and watched part of a training video, so we could see an actual practice.  Then we began learning the stance, moves and an understanding of the symbiosis of the process.  We worked in pairs throughout the day, switching between being the giver and the receiver and working on different bodies.  The better the giver can connect and adapt to each receiver (every body is different, not just in size but in flexibility and trust too) the better the experience will be.  By the end of the day we had learned the entire basic sequence and practiced each element over and over.  We all left feeling empowered and connected by the day.

Sunday we all reconvened and immediately got back in the pool.  We were joined by a woman who does energy work and has already completed about half her watsu training hours.  Having a sixth person allowed us to all work on our technique and practice with each other while our instructor could move through the pool and give us each more hands-on training and support.  We all gave and received three full hours of treatment that day.  It was amazing.  Unlike anything I’ve ever experienced.


There’s something almost spiritual in the practice of watsu.  The relationship between the giver and receiver and water is harmonious in a way that at times you feel at one.  Breath plays a part in watsu as it does yoga.  There are quiet times when the giver synchs their breath to the receiver and as one you rise and fall slightly in the water as you breathe.  There’s a deep sense of relaxation and rejuvenation resulting from the treatment and connectivity that transcends the treatment. I’m completely enthralled with watsu. I plan to take more training even if I don’t complete a program for certification.  I just want to be able to give Cole (and other family and friends) the best experience I can.

IT’S MY LIFE (Jon Bon Jovi)
September 19, 2018

Sometimes I marvel at the things I know about because Cole is my son.  While it’s now all old hat to us, we had an extra learning curve beyond simply being new parents, when he came into our world. We had all of the usual stuff and then all of the medical and therapeutic interventions to contend with, as well as quick introductions to agencies and supports and special education. And of course, random weird things that come into our life.

In case you don’t know, Cole is fed through a g-tube.  The only way we could leave the NICU, after five long weeks, was to have a g-tube inserted because he was not able to suck a bottle or boob.  We had hoped he would catch on when we got him home but seventeen years later he’s still tube fed.

Yesterday I was placing an order for his feeding supplies, which typically includes his formula, gravity flow bags and every other month a new mickey-button (the part that actually is inserted into his belly and held by a little tiny balloon that holds 5 cc’s of water).  I was asked what size, because they like to have you repeat every detail of the order, your contact details and lots of details about Cole EVERY time you call to place a monthly order to make sure you are who you say you are and are ordering supplies for who you say you are ordering supplies for – I’m assuming because there’s a huge black market demand for formula and mickey-buttons.  Anyway, I digress.  I give the size, 16 French, and it occurs to me that I would never know what that means if not for Cole.

Tubing, often catheters and feeding tubing, is designated by French or “Fr” to note the size of the tubing. It’s a French scale where every millimeter is multiplied by .33 (Fun Fact: The French are fond of the number “3” – I deal with withholding tax at work and the France to US withholding tax is 33.33%), so Cole’s tube is 16Fr multiplied by .33, making it 5.28 millimeters wide.  Pretty small.

In the years of parenting Cole, we have had to deal with some many different therapists, agencies, doctors and medical interventions.  He’s had surgeries and treatments that exposed us to so many new adventures.  When he was still small enough to be tucked in to a Baby Bjorn, he did acupuncture to help open his brain flow.  I’d wear him and spend the whole time trying to keep him from puncturing me once his head was full of needles!  He did botox in his hips and arms before it became mainstream for faces, he had his back and neck muscles supported with Japanese kinesio tape before it was available in the US, and now gets Watsu (aquatic Shiatsu) massage when he does aquatic therapy.  I’m actually going to take a two day Watsu training class next weekend so I can take advantage of our pool and support his aquatic therapy at home too.

Being his mom keeps me on my toes and keeps me expanding my knowledge and researching every little potential interest, development, resource, product, therapy, intervention that I hear about related to cerebral palsy, communication, inclusion, education, life as an adult with special needs, etc.  I’m sure I miss a lot but thankfully I have a community of moms who all do the same and we share.  It’s a unique experience that thankfully we share with a welcoming wonderful community of likewise unique families.


FEELIN’ GOOD (Nina Simone)
September 13, 2018

I’ve gone through another period of inconsistent writing and I find I miss the outlet terribly.  Life gets in the way of my creativity!  It inspires it as well but when writing is more the hobby and work and family responsibilities fill much of each day, hobbies take the back burner.  Nevertheless, I’ve challenged myself to make a bigger effort to sneak in a bit of writing each day.  The truth is, it benefits my mind and soul, so it’s a valued effort.

I turned 54 on the 4th…While I love birthdays, particularly other people’s birthdays, I don’t generally feel the creeping up of the years to be bothersome.  This year though it did make me feel introspective. Though I do have some self-awareness and keen sense of the things I need to do maintain my health, sanity, and joy, I do have a tendency to shirk some of the responsibilities that are required to maintain myself.  This year I made a decision that I will shirk less and go through my 55thyear taking better care to make time to exercise, write, enjoy my family and friends and to step out of my comfort zone as much as possible.

I’ve actually been attempting to try new things and put myself out there throughout the past few months.  Nothing radical, small steps to expose myself to new experiences, places, and people. It’s been a wholly positive endeavor. I took a girl’s night out grilling class and wound up sharing a table with two women, both of whom are speech pathologists and one of whom had coincidentally worked at my son’s school for a brief time.  What are the odds?

I also took a chance and applied to a writing program that Imagine Entertainment just launched. Beyond the lengthy application, that included a video component, I had to provide a project I would like to develop (I have a TV series idea that I’m working on) and other writing samples.  I was not among the handful selected (over 4,000 writers applied), but I feel proud that I put myself out there and gave it a shot.  I plan to try again for their next session in February.  It will give me some time to get my ideas in to a better format and who knows???  Another coincidence, my company moved into the same building as Imagine a couple of weeks ago!

I look forward to having a successful self-motiving, self-aware, self-caring, self-sharing year.  I want to be present and well for myself, my family, my friends and for any new challenge or experience that comes my way.



November 23, 2015

We’re trying to solve a mystery…

Some rather angry bruises appeared on Cole’s inner thigh last week. They look like a series of overlapping oval shaped bruises so whatever is causing them is something that occurs continuously throughout the day(s). The mystery is what.

All of the equipment he uses on a daily basis is equipment he’s been using for a while prior to the bruising, and even post surgically without bruising. None of the various strapping or harnesses or wedges really sync up with the location of the bruises and there’s nothing else he’s doing differently that could cause them. It’s frustrating and curious.

We’ve noticed that when he’s home and wearing the knee immobilizers (he has to wear them at night for a year while his body continues to heal from the surgery), he sometimes slips his fingers into the top of the knee immobilizer, which has led us to wonder if he’s causing the bruising himself. It seems unlikely but nothing else seems like it’s the cause either.

This is one of those times I wish he could just tell us what’s happening…Miss Marple I am not!


November 2, 2015

Prior to Cole having his surgery I read a funny article about the healing power of a cat’s purr (Healing Power of Cat’s Purr). I shared it with my husband because we have a cat, Charlie, and I thought it was kind of interesting. He scoffed at the idea, as he’s apt to do when I share something off the beaten path, and particularly when it comes to health or medical related subjects.

Charlie is about twelve years old. We adopted him when Cole was two, along with his brother (Nick) and sister (Nora), both of whom are no longer with us. Charlie’s a fairly independent cat. He’s always liked Cole and as he’s aged he often tries to sleep on Cole’s back or bottom (Cole prefers to sleep on his stomach), but otherwise, we don’t typically see much of him during the day. Charlie spends his days sunning outside, visiting a few neighborhood dogs and cats, and doing whatever cats do. He relishes his independence.

However, Charlie’s routine took curious turn when Cole came home from the hospital following his surgery. Charlie became a caregiver. He took to vigilantly curling up between the casts during the day and night or draping himself over one of Cole’s legs with his head resting on Cole’s hip, purring. Purring a lot. Purring healing purrs.

He spent every day of Cole’s healing nestled on or near Cole. We took to calling him Nurse Charlie because he was so consistent. When Cole was moved to another room, Charlie would curl up in the spot left by Cole until he returned and then would reposition himself to be close to his charge. It was really fascinating. He took his nursing duties very seriously.


Even now that Cole’s returned to his usual routine and is out of the house during weekdays, Charlie still hovers nearby and curls up with him for bedtime. It’s rare that if Cole’s resting on the bed, Charlie’s not nestled right next to him. It seems he’s not quite ready to stop caring for his precious patient.

Funnily, my husband and I both took to posting #NurseCharlie photos on our instagram accounts and when he was recently away on business he had lots of inquiry about Nurse Charlie. It would appear that our cat has captured some hearts. Perhaps he needs his own instagram account!

September 2, 2015

My husband is traveling for the first time since Cole had his surgery. I usually look forward to his travels because I enjoy having the time alone with Cole. We both do. It’s sort of nice to just have to focus on Cole’s needs, and mine, and Cole’s usually pretty happy to have the extra time with me so he’s super easy going.

Not so this time! He’s struggling. Since starting school a couple of weeks ago, his post-school routine is to get home and melt down. The melt down translates to tears, whining, whimpering, and stress. General upset. He can’t control it and he can’t calm down. I had this thought that he’d be super happy to have me at home early with him and to himself (he usually is) and that I’d get a different afternoon but that’s not the case this time.

Despite every effort I’ve not been successful in changing this new routine of his, although last night I did manage to gain some understanding of it. He doesn’t exhibit this behavior at school or in homework club. He holds himself together, despite being uncomfortable, sometimes in pain, tired, and nervous at school. He works really hard not to let that show at school. So he dissolves into a puddle of release when he gets home.

The only thing that seems to help is to let him soak in the bath, watching cooking videos, for a very long time…we’re talking two hours…cooled water…just leaving him be in the tub (actually on top of the water, on a bath chair that is too small for him)…and no bubbles!

It breaks my heart that there’s not much I can do for him and that he feels like he needs to present himself as being so fine in front of his peers and teachers. I don’t think anyone would judge him for having a hard time after the summer he’s had and whilst his body is still very much healing. I don’t know where his determination comes from, or why he feels he needs to put on a happy face? What is it inside him that has made him recognize that this form of survival?

It fascinates me that he can make the determination of when and where and around whom to smile for. He’s not opposed to misery while out and about in random public places, but when it’s peers, he’s loath to be anything but okay. It’s a rarity for him to cry, or fuss in front his friends, unless he’s really confident that they’ll understand or not judge him. We do have some family friends who do occasionally get a glimpse of his not so happy face, but they’re friends who have become more like family.

He’s a strange and fascinating boy. I so wish I had more access to the inner workings of that beautiful brain of his!

June 1, 2015

My husband and I have different opinions when it comes to alternative medicine or wellness.  I have a higher interest and intrigue which he tempers with a big does of skepticism.  With Cole’s surgery looming in the not so distant future (June 18th!), I find myself researching ways to make him comfortable both in the hospital and at home for the weeks of recovery.  I’m also researching supplements that can help heal bone, joints and tissue, like tried and true Vitamin C, zinc, and bone collagen.  I’m not a quack but I do believe that supplements can be highly beneficial.  Where Cole’s concerned, my tendency is to be more conservative in my choices.

While I’m willing to try herbal concoctions and am happy to drink thick green things, I keep my research for him to things that have scientific evidence of enhancing healing.  I just want him to feel okay, keep his immune system up and for the bones and tissue to heal well.  I worry about this immune system because he’s going to be fairly immobile for nearly two months, which in itself is hard on any body.  He’s used to moving around quite a bit and loves to stand and walk and move his body.  Stagnant bodies are more susceptible to illness.

I’ve also stocked up on a lavender based sleep spray that Cole and I love.  Hospitals smell so, so, well, so much like hospitals, and they’re anything but relaxing or calm.  I’m keen to see if something as simple as aromatherapy can help him feel a little more relaxed at a time when he’s going to be anything but.

Because music is so important to Cole, I’m creating some playlists of favored songs with the hope that even if he’s drugged up and dozy, softly playing tunes that make him happy will promote some calm for him too.  I’m hoping he’ll just be in the hospital for a couple of days.  Home is a always a better place to be for healing.

That said, the same interventions will be useful at home, especially during the first week when pain management is the main focus.  I’m hopeful that a peaceful, calm, softly fragrant home will feel nurturing and comforting to him.  I sound like I’m creating a spa environment for him!

I guess in a way I am.  I just want to make this major surgery as easy on him as I can in whatever small ways I can manage.

WHERE IS MY MIND? (Series – 2)
May 18, 2015

I’m all over the place lately. Work is busier than ever. We have six films we’re preselling in Cannes, plus several others that have a lot of available territories that need to be cleaned up. No real complaints about there being a lot going on but my work days are full of work, and home is taken up with a somewhat needy Cole. I sometimes feel like when he has a lot of mom time (my husband has been traveling quite a bit), he then craves more mom time. I’m like a drug and he’s addicted!  Ha!  And there are still so many things catching my attention out in the world…

The following are some curiosities that have struck my fancy recently…

 9 ways stem cellsbrain commune

good habits nurse charlie

  1. Ways to Improve Your Child’s Self-Esteem
  1. Clinical Stem Cell Trials on Children with Cerebral Palsy
  1. The Moral Bucket List
  1. I love this idea! A compound of sorts…
  1. Anything to keep my mind sharp!
  1. Why Charlie, our cat, will be Cole’s best post-surgery nurse

WHERE IS MY MIND (Series – 1)
April 10, 2015

I am a magazine junky. There, I’ve come clean. As much a I love to tuck into a great novel, and do read on a nightly basis, I love the immediacy and compact nature of magazines. I can pour through a stack of them at my leisure and pick up all kinds of information, some necessary and some trivial. They delight me.

Over the past several years, I’ve trimmed down my paper subscriptions, opting for online versions as well as some online magazines like Chalkboard, Huffington Post, Green Monster, Food 52 and The Skimm. They serve my curiosity and fit in well when I only have a short time to play. I also love the ease of Googling anything that strikes my fancy (you don’t want to see my history – it’s a plethora of weirdness) and to find lots of information about everything from recipes to adaptive seating to best red lipstick shades to accessible travel to the latest in Swedish design. Right now I’m a bit obsessed with researching stem cell treatment.

And don’t get me started on Pinterest! Before Pinterest, I would tear or cut out articles, pictures, recipes and more out of magazines and newspapers, sticking them into files that I rarely looked at! With Pinterest, I save everything and anything and I do actually use my Pinterest files. I can take haircut ideas to my stylist, search for cool light fixtures for my dining room, track ideas for our 2016 trip to Paris, pull up recipes I’m keen on, and more, more, more…without clutter!

So here are some things I’ve found intriguing recently…places my mind has gone wandering:


  1. 16 Party Bar Ideas Because I love entertaining and doing a festive bar is a fun way to let your guests DIY
  2.  Fascinating – What Your Eye Color Says About You
  3.  This sounds like so much fun – Shooting Hoops
  4.  Sara Gottfried – I am so looking forward to reading her new book about managing hormonal influences with diet
  5.  Contemplating this a means of storing all of our photos and documents: Bevy
  6.  For the lo-tech people like me who could use a little help: 20 iPhone Hacks