Taking Time for Me

My time in Austin with Odin, Ren and Eric was incredible.  The feeling of family, and knowing that we are there for each other was truly the essence of the trip.  It began with the four of us walking to a nearby Mexican restaurant, ordering foods that we could share, while at the same time respecting each other’s preferences.  Watching Odin enjoy his food, is such a beautiful reminder to treasure each morsel I put in my mouth.  He picks up each food, looks at it with curiosity, but with complete trust that he will be experiencing a taste, a texture, a smell that is unique to that very moment.  He usually loves whatever he tries, but every once in awhile he’ll be surprised and he’ll simply spit it out with the perfect face of ‘yuck’.

Ren was coaching the Brooklyn/New York Skeeball team at Nationals, and my job was to spend time with Odin, make sure he takes his naps, eats his meals, and stays on his schedule.  heaven. We went on three days of discovery and adventure.  The Austin Children’s Museum and the discovery of giant music chimes in a local park, were highlights of the trip.  Odin is beginning to talk and to sign.  He’s learned the signs for ‘bird’, ‘milk’, ‘more’, ‘all done’ and the beginnings of ‘eat’.  His most wonderful sign of course is his smile and laugh, which I suppose is the universal sign for joy.  He is pure joy.

I’m in Providence, RI now with Chih.  We made potstickers with his friends – such a blast! and then we sat around and I listened to them share from their hearts.  They are all teachers working their butts off in under-resourced schools, and they just love these kids – they want the best for them.  I could tell they were trying to talk about things other than work, but the conversation kept coming around to the kids, and what was and wasn’t working for them.  I loved the way Chih could see the goodness in every single person, even the kid who was caught with a knife in his backpack.  Some of the older teachers wanted the 14 year old kid arrested, but Chih wanted to understand him, and his situation.  I wanted to cry.

I’m off to a women’s leadership conference in Williamstown, MA, where I will be surrounded by powerful women making a difference in the world.  I continue to be in awe of my blessings, and grateful that I have the freedom to travel, learn and grow.

My mom’s health couldn’t be better.  She’s eating pureed foods, getting extra nourishment through the tube, and having fewer cramps.  When I set off on this trip – the longest that I’ve been away – my mom looked at me and smiled.  She was happy for me.

Living Large…in Awe of the Possibilities and Filled with Gratitude

As the universe unfolds, I find myself in such gratitude for all that is available to me.  My mom continues to improve and has a re-newed spirit now that she has a way to communicate, my dad just got his 8 month PET scan that revealed that he’s still cancer free after his radiation earlier this year, Brian landed the perfect job helping people with disabilities into the job market through vocational training (YAY!), and I am off on an adventure that is opening me to new and glorious opportunities.

To put it simply, I feel like I’m finally living LARGE…no more living small, no more reacting to circumstance, no more waiting for things to improve, no more caring for others before caring for myself.   I now feel I’m in an ongoing state of being that is all about change, mystery and creation.  Did I tell you that amidst all this excitement, I’m fixing up a 91-year old Spanish 500 sq.ft. bungalow in a part of town that is artsy, fun and newly discovered (on my part)?  I decided I wanted to be in a part of LA that would allow me to use the metro and plant an organic vegetable garden.  The metro stop is less than a mile away from my place, and while my house is tiny, there is plenty of outdoor space to plant the vegetables I plan to live on.

I’m working with locals who are hard working and good at their trades!  It’s been an amazing experience where I get to use my Spanish, and grow my connections as I trust in people who I can learn from, and who can lead me to the next knowledgeable tradesman.  It’s been such a beautiful journey of growth, connection and transformation!

Now that my parents are doing so well, I’m taking this opportunity to travel.  I’m  babysitting Odin while Ren coaches the New York Skeeball team at the Nationals in Austin, TX.  Then I head to Providence, RI to observe Chih teach.  If all goes well, I’ll head to Italy for a writer’s workshop with one of my favorite writer friends, Ann Hood, and will return before Thanksgiving to take my parents to Ojai for a family celebration.

yes, I am beyond grateful for all the blessings in my life.

A True Awakening

Now that my mom can “talk” with her BINGO card, she can do more things.  It’s as if she suddenly feels alive, that she has a purpose and meaning in living!  Today she started feeding herself!  She picked up the spoon and started trying to feed herself.  When she got the hang of it, she actually picked up her plastic bowl, and held it like her rice bowl from years ago, and was putting the food in her mouth from the spoon with a shorter distance to travel to her mouth.  Oh my goodness, I can’t contain myself.

This morning our caregiver, Sofia, told me that she actually spoke and told her “I woke up last night and couldn’t go back to sleep I don’t know why because I felt good.”  This is just amazing.  Could the ability to communicate with the written word be helping her awaken her vocal speech?

Her spirit must be experiencing a true awakening.  She’s stronger, pulling herself up out of bed, holding onto the grab bar and standing, holding her colored pencils and finding pressure enough to fill her coloring book pages.

Today she gets a shower, and her caregiver says she’s going to dye her hair because she asked!  I’m doing cartwheels!  She knows I’m about to leave on a long trip, and her timing couldn’t be better.  I want to be here to see her make these giant steps, but I also know I’m ready to take a break…

hey I’m off to visit Odin!!!

And the World Continues to Expand…

Another beautiful day for my mom, as she continues to use her BINGO card to communicate.  Each day we practice, and she’s getting better and better at pulling down the window and better at remembering how to spell words, and to locate the letters on the board.  She is getting so good at pulling down the little red window in fact, she won the big jackpot at BINGO and was the first to get a Black Out yesterday!  She was absolutely ecstatic!

Today was another day to be excited about.  I was heading down to dinner with my dad, and I suddenly had this thought.  What if the foods we think she likes actually aren’t what she really likes.  What if all this time we’ve been giving her foods that she doesn’t care for?

I asked her, “Mommy, what’s  your favorite food?”

She took the card and quickly spelled ‘FISH’.  Wow!  I thought it was ‘SHRIMP’

I then I asked her, “Whats your favorite drink?”

She pulled the windows “S – E – V – E -N    U – P”  ! I couldn’t believe it!  I had never seen her drink a 7-UP before, and that’s because we never knew to serve her one.  My dad had always thought it was Coke that she loved, so I reluctantly ordered it wishing her favorite was simply water.

I asked what her favorite fruit was, and she responded “PEACH” !   All these years, I thought her favorite was ‘Watermelon” !  None of us had ever though to bring her a peach.

I learned so much from my mom tonight.  When she learned that I had brought her her favorite dessert – STRAWBERRY ICE CREAM – she proceeded to take the BINGO card and spelled “STRAWBERRY SHAKE”… and so we made her a strawberry shake.

All these years we just never knew what she loved.  We had made certain assumptions, and she quietly accepted what we put in her mouth.  And now she has a ‘VOICE’!!! and I’m so incredibly happy for her!

 

Happiest Day Ever!

My mom has a way to communicate!!!  I am so incredibly happy… It’s been years that she’s been trapped in this body that doesn’t work, not able to tell us her needs, her thoughts, her dreams.  We’ve tried the computer keyboard, the iPad, pen and paper, but nothing seemed to work.  She doesn’t have the pressure to push buttons, and her fingers would shake so much that she couldn’t even point to the right letters. Her fine motor skills are restricted to one tiny movement – the up and down motion of her paint brush.  But she doesn’t have the coordination to create the shape of letters.  It’s a tiny movement that she has mastered, the way her body has mastered the breath.

Earlier this week I had taken her to play BINGO.  I wasn’t sure how she would do, but I thought we’d give it try.  She’s getting stronger each day with the feeding tube, and is able to sit up well.  I hadn’t played BINGO in years and was surprised to see they had cards with little red windows that you pull down whenever you hear a number that matches on your card.  (I was familiar with the red chips that you would place on the card – that’s how old I am!)  To my surprise, my mom was able to do it!  She could pull the little window down and she could follow along with the rapid fire delivery of the numbers.  She’d fall behind if a window would get stuck, but she could pretty much follow along!  She even WON a round!!!  It was such a beautiful experience, sitting there watching my mom able to use her brain and to then get a BINGO!

And then I had a BINGO moment!  What if I changed the numbers on the card to letters! I pulled out my Amazon app ordered some BINGO cards… They arrived yesterday – they were nice and sturdy, yet light enough for my mom to lift.  My sister, Michelle, was visiting yesterday, which was unusual in the sense that we’re rarely there together.  We like to lighten up my dad’s day by spreading out our visits and basically taking turns.  When the cards arrived we quickly began transforming the cards to letter cards.  There were 25 spaces to a card, so we left off the Z, and each card was perfect for the alphabet!  And because it’s hard for my mom to find letters on the keyboard, never having learned how to type, we put the letters in the order of the alphabet so she could find them more easily.

I think it was meant to be that my sister was with me yesterday because for her to be there experiencing my mom’s happy moment was truly a moment to be celebrated!

It was a lot like the how Ann Sullivan must have felt when Helen Kelleher signed the word “WATER” for the first time.  My mom’s first sentence was “I LIKE TO EAT”!!!!  I was in tears laughing and jumping up and down!  We fed her a pureed persimmon that my sister had brought from a 90 year old tree that a friend from church had given to her to give to my mom.  After my mom ate the pureed fruit, she took the card and wrote the word “SWEET”!  OH my!!!

My mom now has a purpose for living!  She can talk to us!  Can you believe it???  Truly a new beginning for us all, but especially for my mom.  Bless her heart!  She is such a sweet inspiration.  I bet she can’t wait to wake up this morning with a BINGO card next to her bed.

Life is full of miracles

I know some of you been worried.  Unanswered emails, no blog entries…I am alive…and so is my mom!!!!

I’m so happy to report that my mom is actually doing well!!  It’s been a scary road, but she has managed to pull through.  She is a fighter!  The feeding tube has allowed her to get the nourishment she needed to put on weight and the pureed food by mouth has allowed her spirits to be uplifted….!   oh my goodness, I honestly thought we were going to lose her.  Thank you for your prayers and concern.

I’ve been traveling and trying to meet a deadline for my book to be submitted for review.  Lots of changes and rewrites, but I’m getting so close!  So instead of making time to blog, I’ve been making time to write my book.  It’s been flowing, and I finally have the different voices coming through.  I can’t wait to share it with you.

As for my dad, he’s about to turn 90!  We’ve been busy getting ready for the big celebration.  I’m so happy to see him loving his community at the village and that he has so many many beautiful friends who want to honor him.  My mom was chuckling today when he told me that he wanted to sing Frank Sinatra’s “My Way” to his guests – all her life, she’s had to live with things being HIS way… so it’s no wonder he wants to sing that song on his birthday!

 

 

 

Stuck in between

It’s not always like this, right before the end.  Sometimes death is sudden, and sometimes it takes a long time.  Either way is painful.  Letting go of someone we love is never easy.

Yesterday my mom’s oxygen level went below acceptable and her breathing was labored and short.  The doctor ordered oxygen for the apartment, and told us to monitor her oxygen level every hour.

My dad wants to save her, and keep her from dying.  “She just has to suffer through this and then she’ll get better, ” he announces as if he’s the doctor who guarantees immortality.  But when I see her in such pain from severe leg cramps, unable to eat real food, lying there with bedsores and diapers, I really have to wonder.  Being stuck between life and death is where she is.  She’s alive, but the quality of life is no longer fun, enjoyable or even simply boring – to be honest, it’s crap.

I spend most of my time reading to her, or listening to her try to tell me something.  I’m not sure she understands any of what I read, but she always seems to murmur ‘yes’ when I ask if she’d like me to read her a story.  Maybe I’m imagining her say ‘yes’ because I’d rather be distracted by words than to see her in her silent scream.

Her favorite stories are the ones about the love she shared with my dad when they were young.  I like to think she’s drifting to a happy place where all those memories lie.  Her heart remembers those times well, and I can feel her heart expand,

And so I read, and listen, read and listen, and sometimes we just hold hands and cry.