The Wonder of Rhiannon

Her name was stored in my back pocket for years before she was born. Like an old boyfriend's phone number on a scrap of paper, folded and creased to tatters, it was a preserved remnant of my teenage enlightenment years. Like so many other young women of my era inspired by Stevie Nicks I vowed that some day I would name my own daughter  Rhiannon. She would ring like a bell through the night. While my naïve expectation was that she would take to the sky like a bird in flight these days I ask myself - I ask my Creator - will she ever win?

As she closes in on a third year of chronic illness, today she will undergo major surgery that I hope and pray puts an end to her pain and suffering and enables her to spread her wings. Trust me, no one deserves it more.

Born tiny and struggling and fighting for every minute, Natalie Merchant’s Wonder is probably a more appropriate anthem for Rhiannon. Starting life at hardly three pounds Fate did smile on her, and Destiny visited her neonatal intensive care cradle laughing in the face of every medical prediction:

Know this child will be able

Laughed as my body she lifted

Know this child will be gifted

With love, with patience and with faith

She’ll make her way

Beyond surviving the first six months, I was told not to expect a lot of things other mom’s take for granted: walking, talking, intellect… boy were they wrong. She not only walked she ran, she not only talked she advocated, and she not only learns but she thinks and acts with a moral compass that puts most people to shame.

Rhiannon endured physical and occupational therapy, countless surgical procedures, and the kind of personal hardship that goes along with having a disability that made her invisible to most of her peers.

People see me

I’m a challenge to your balance

I’m over your heads

How I confound you and astound you

To know I must be one of the Wonders

Of God’s own creation

And as far as you can see you can offer me no explanation

That’s okay, she trumped them. Inducted into the National Honor Society, she ran cross-country like a champion even though she finished dead last at every meet. Joined the human rights club and took the anti-bullying bill to the Statehouse and gave eloquent testimony in favor of the right to be treated decently for the bill that is now law in the Commonwealth of Massachusetts.

That's right I'm the proud mother of Rhiannon. Today she is in the fight of her life and can use all your blessings, your prayers, your good wishes, your light. Who or what ever you believe will carry the day should be tapped on the shoulder and reminded that Rhiannon has had quite enough and deserves to win.

All your life you have never seen a woman

Taken by the wind

Would you stay if she promised you heaven?

Will you ever win?

Will you ever win?

*Update: Rhiannon came out of the surgery just before noon with a good but not perfect outcome. Knowing it could have been a lot worse leaves us grateful. Her road to recovery will require one more surgery in six weeks time. Please keep those well wishes and prayers going as she soldiers on.

Then new normal isn't so bad

This morning mom picked up my cell phone from the dining room table and turned it over in her hand. What’s this?

It’s hard to tell how much memory she has of anything current but one thing is certain, most advantages of modern technology are lost on her. Even before being diagnosed with Alzheimer’s in 2010, I recall trying to teach her to use the computer to send email to her friends and family or to even to play solitaire. She almost seemed afraid of it. She did manage to use a flip style cell phone for a few years but today my iPhone 5 was a foreign object.

As are many common things like the coffee maker and the hair dryer. Putting on her seat belt in the car used to be automatic but now she doesn’t recognize its significance.

She recognizes things like a kind touch, a soothing voice, the comfort of logs burning in the fireplace, and is consistently delighted when I offer to make her a hot fudge sundae. I have come to learn there are things that matter, and things that don’t.

About a year ago I noticed that her prosthetic breast, the one that replaced her actual left breast lost to cancer in 1979, was ending up in her pocket by the end of the day. It was then I realized her skin had become so loose that having the fake boob bouncing around in her bra was probably irritating. The bra straps would leave red marks on her skin. So I liberated her. Mom was never big breasted to begin with, and wears layers of clothes even in the summer so the missing bump has hardly been an issue.

She has had three sets of hearing aids. None seemed to help a great deal. The first pair disappeared in what I fear was a malicious act of defiance to rid herself of the annoying buzzing noise in her ears. The audiologist swore the latest set would be more comfortable and improve her hearing without the irritating noise but he was wrong. They sit in the drawer unused and we have to repeat ourselves often in a loud voice and when she finally understands she laughs and says, Well I think I heard you now!

The latest thing to go was her dentures. A few months ago it seemed like she simply forgot how they worked. I watched her fiddle with them from just outside the bathroom door. At first she would turn them this way and that and ultimately get them in, then chomp her teeth together to get a tight fit. Then it became more troublesome and she couldn’t seem to get them beyond her tongue. She would gag and choke. I tried to help her but she wasn’t having it. So the dentures have been retired with the prosthetic boob and hearing aids.

We speak at her directly in a loud clear voice. We cut her food into digestible bits, and when I dress her for the day her slightly asymmetric appearance is a blur.

I’m not a perfect caregiver. There are certainly times I have become impatient especially when the change in my mother involves forsaking things we perceive to be normal like having two breasts and a full set of teeth. But the new normal is really whatever mom is comfortable with so long as she is otherwise healthy and happy. So if my iPhone is a paperweight, so be it.

Don't let the bedbugs bite: Or, what not to say to someone who has Alzheimer's

Are those my blue slippers?

Yes mom, those are your blue slippers.

She asks me the same question nearly every morning since she got the slippers this past Christmas.

Those are nice slippers, she says as I help her get dressed for the day.

And they are. I went online to find a perfect pair of spa slippers in her favorite color with a snug Velcro closure and rubber soles to prevent slipping.

By the time she is dressed her attention goes back to the same pair of slippers.

Are they yours?

No mom, those are your slippers.

Those are nice slippers.

It is as routine as the rest of the day for mom and me right down to the last words we share as I tuck her into bed.

Good night mom, I tell her as I flip the switch darkening her room, and then the next one that leaves only the nightlight a glow in the hall. As I walk away she says, Good night… pauses… sleep tight, don’t let the bedbugs bite!

She recites the rhyme nearly every night like I am still the little girl who was certain that hairy monsters lived under my bed, the kind that would grab me by the ankles and yank me into the terrifying bedbug underworld if my legs dangled below the bed springs after the lights were out.

I used to give mom a kiss on the forehead and say, Good night, love you.

Until one night half way down the hall I heard her talking to herself. I stopped to listen anonymously.

She kissed me on the forehead… pause … said she loved me… pause again… who was that?

There was a period in her cognitive decline when my mother would know enough to be devastated by that missing critical detail – my name. But that night she blurted the question into an empty room of purple shadows genuinely seeking clarity.

A few days later mom was watching television while I sat across from her on the sectional. It was around the time she typically would go to bed. She had nodded off for a bit and was startled awake by the cat climbing onto her lap. She looked at me and asked, Is there anyone here who can give me a ride home?

On the heels of the bedtime bewilderment over who was kissing her goodnight and who loved her, the question was a disturbing signal of her further decline. It caused me to do something that annoys me to no end when other people do it.

It still ceases to amaze me how often old friends and relatives she hasn’t seen in a while move in on her in an uncomfortably close way, especially when you consider they are for all intent and purposes in mom’s world strangers, and say, Do you know who I am?

Or even worse, Oh Shirley you remember me from the bridge club right? Frank’s wife? So I am. . .? Like it’s a Jeopardy question.

To spare mom’s dignity I jump in with the answer when I know it. When I don’t the old friend is stuck having to remind her and mom pretends to give a shit. I actually love watching her finesse those moments.

Asking, Do you know who I am? should top the list of questions never to ask a person suffering from Alzheimer’s or any kind of dementia. That is unless you are the primary caregiver, the one who has lived with the person since they were diagnosed nearly a decade earlier, and the one who has been the person’s daughter for 55 years. That person has a special right to know how far her mother has drifted from reality.

So on that night, as mom was asking me to call her a cab to go home when the bedroom she had been sleeping in for the last six years was ten feet away, I needed to know.

After getting her into her nightclothes I sat her on the edge of her bed and asked the forbidden question.

Do you know who I am?

Ha! She was indignant and asked the question right back to me.

Do you know who I am?!

She may have forgotten a great many things but not her stubbornly defensive nature. I could see the wheels turning. She knew she should know the answer but was stalling for time.

Well, I responded, I am pretty sure that I am your daughter. So now can you tell me who I am?

Grinning she looked up at me and said, Well… I am pretty sure that you are I.

True on so many levels it was a winning answer if I ever heard one.

I tucked her in, kissed her goodnight, and told her I loved her.

Back to the future

The months, weeks and days leading up to a Mashpee Wampanoag election have become so contentious to the point of being toxic to our community. What used to be challenging in the family debate kind of way has become vindictive and antagonistic leaving deep and lasting wounds.

So with one week to go I began a self cathartic exercise of remembering ancestors and those gone on too soon ~ a look back before moving forward. I shared them not to sway anyone's vote in one direction or another, but to remind my Tribal family of those traditions and stories that bring us together rather than tear us apart.

Sunday, February 1 ~ Rabbit, rabbit

Day one of WTC election countdown honoring the vision of our ancestors. I'm always inspired by my great-great-great-great grandfather Blind Joe Amos, our self schooled missionary who never gave up believing in our independence and human rights at a time when we were still considered savages. He led the revolt to reclaim our precious meetinghouse. Can you imagine our community without it?! I'll be looking for that kind of passion for preservation when I cast my vote. ‪


Monday, February 2 ~ Groundhog saw his shadow

Six days left and I am remembering cousin Randy who we lost one year ago today. In his all too brief life he gave us many gifts, his beautiful children topping the list. He taught us to laugh at ourselves and in his parting days to forgive each other because none of us are perfect and it takes wisdom and courage to admit when you are wrong. We miss him as a family and as a community. ‪



Tuesday, February 3

Five days to go. Remembering Gertrude Mye (Haynes) Aikens, Princess Evening Star who died in March of 1996 at the age of 98. Hard to believe a whole generation of Wampanoag are growing up without her influence. During the early part of the last century Princess Evening Star and a league of traditionalists including Clint "Chief Wild Horse" Haynes, Mabel "Nakoomis" Avant and Billy "High Eagle" James and many others defied government initiatives to effect cultural genocide on the Wampanoag and established tribal meetings and the Wampanoag Nation Powwow right here in Mashpee. As a child I was always thrilled to go to the gift shop and pageants at her South Mashpee home and hear her stories. Had it not been for her efforts, and the efforts of her generation where would we be today? I will always remember her for her beauty, pride, and the determination she willed to all of us to maintain our culture and traditions. ‪


Wednesday, February 4

Four days to go. Who can forget chief "Sly Fox"? Vernon Pocknett Sr. may be best remembered for his determined fight for our hunting and fishing rights but I will never forget his testimony during the infamous land suit in 1977. As he was being cross examined by famed attorney James St Clair (same scoundrel who represented Nixon in the Watergate trial represented the Town of Mashpee) Vern kept referring to his people as "the tribe" a key contention of the hearings, and St. Clair would say to the judge, "your honor, strike that from the record." But then Vern actually turned the tables on the litigator when St Clair implied that Vern and others might not be Indian because of mixed race. Vern turned to the judge and said, "Your honor, strike that from the record." 
And he did. ‪

Thursday, February 5

Three more days. The legacy of Loretta “Smiling Wind” Jones, beyond her own beautiful brood of children and grandkids, is every dancer, every little boy and girl, every tiny tot parading into Grand Entry. Before there was Indian Ed or formal Tribal youth programs, before we had money for fancy fringed deerskins or satin shawls and ribbons, we had Loretta. She instructed us to make regalia out of anything reasonably close and adorned dresses fashioned from vinyl fabric to odd lots of cow hide with chunks of shells attached with some kind of bondo that predated the invention of a glue gun. No child who wanted to participate in Powwow would be left out if Loretta knew about it, and along with my mother Shirley Peters the two of them would prepare us for the big day banging out a beat on a box of Quaker Oats and steppin high around my dining room table. They were comical! But there was no question we were powwow ready thanks to Loretta and mom. Miss her terribly, and so does mom.


Friday February 6

Two days to go. I remember when general meetings were held in the basement of the old tribal office and dad would ask for a prayer to start the meeting then assign some unsuspecting member who might have been nodding off or otherwise not paying attention. We all would chuckle then after a proper blessing was offered dad would say, “and now for a poem,” only he pronounced it poeweem. There would be sighs and clamoring to get on with the meeting and chairs shuffling. But then everyone listened with great intent because they really loved dad’s poeweems and waited to hear if they would be mentioned or if some familiar story was to be told. It was a wonderful way to start a meeting. Russell “Fast Turtle” Peters came from a long line of tribal leaders including his brother Supreme Medicine Man, John “Slow Turtle” Peters. His sister Clara “Dancing Pony” Peters and father Steve “Happy” Peters were among the many tribal members who served as town leaders, an early form of Tribal Council because back in the day all the Selectmen were tribal members. Miss you dad. Love and admiration to you all.

Saturday, February 7

One day left. It was the second annual Wampanoag Ball. Sons of Italy was packed when Melvin made an entrance in his cowboy boots and Stetson hat adorned with feathers, his denim attire formalized with a fancy vest. He was ready to do what he did best, dance. But when he saw me in my ball gown opening oysters to keep up with the demand he jumped in to help. I never imagined it would be the last time I would see him. Melvin “Quick Foot” Coombs was many things, a proud Wampanoag, a champion traditional dancer, a role model and teacher to our young ones, and a generous friend to all with a legendary sense of humor. Standing in a long pot luck line at a social I was stalled in front of Melvin who insisted I have a bite of his stew which I did and it was delicious so I asked what it was. “Road kill raccoon!” He laughed, as I am sure the look on my face was priceless. Many of us still have a purple ribbon for justice for Melvin. That was not to be in a Rhode Island court, but another kind of justice lives on in our hearts and memories and the love for a man who loved Mashpee. 

Sunday, February 8 ~ election day ~ WWAD

Today is the day and this woman will be in my heart and mind as I consider our future. Quietly, respectfully and deliberately Alice Mae Lopez did so much for so many never expecting anything in return let alone recognition. But since her sudden passing four years ago it is all we can do to remember her. Posters and T-shirts bare her likeness and there will be streets and even a statue is planned in her memory. All the stuff she would shy away from if she were here. But the kind of stuff that is necessary so we never forget her influence and gifts she passed on. She was a traditional role model and as an advocate for the Wampanoag, she was a warrior. Like it or not Alice, you a legendary. To me she was a dear friend, like a sister, and even while she was younger by a few years her wisdom was a thousand years old. I was always grateful for it. To this day when faced with a hard choice I ask ~ WWAD ~ what would Alice do? Then I follow her instructions:
• Anything is possible
• Believe in yourself
• Lead by example – Don’t preach
• There is goodness everywhere. Finding it makes evil easy to recognize.
• Share. If you have two blankets you have one too many
• Dance, just dance
• Love with a dose of caution
• Smile, hers was a winner
I miss her every day but am so grateful to have had her in my life. Today I will simply follow her lead. WWAD.

The Jingle Bell

When it was new it was a gleaming bright bell made of tin but polished in a gold tint with a red ribbon looped at the crown. Instead of a clapper, dangling from the bottom was a small glittering plastic ring that when pulled made a clicking noise drawing out a string until it reached the end of its slack. As soon as it was released the music began.

“Jingle bells, jingle bells, jingle all the way,” my brothers and I sang along.

Concealed behind a slice of gold painted cardboard that fit snuggly into the rim was a tiny mechanical music box that would play several rounds of the holiday carol before the string was drawn completely inside leaving only the ring to be tugged again and again by gleeful children. For years the bell was the most anticipated ornament of the holiday season in our household. We adored it at first for the song inside, the excitement it generated and ultimately the memories it would hold.

My earliest memory of the bell was as it hung from a hook in the center of the archway molding between the living room and dining room of our Philadelphia home. I was too tiny to reach the ring even after moving a dining room chair underneath so I would beg my daddy to lift me up so I could hear it chime.

Half a century later the bell has seen better days. It is covered with scratches and dents. The red ribbon is tattered and stained. The glittering loop is long gone replaced with a metal “S” hook that serves to keep the string from being completely drawn inside where the tired old music box still hides.

These days when the string is pulled the notes tick out so slowly it sounds like a requiem for the dying bell struggling to be relevant till its last note.

Anyone else would easily toss this hideous bell in the trash without a second thought. For years I have tried to dispose of it in some responsible way that didn't offend our family legacy. Once I put it in a box of retired ornaments to go to Goodwill after the holiday. Not sure how it happened but the following December it mysteriously appeared among the holiday decorations as if it migrated out of the trash on its own. Another year I gifted it to a brother who chuckled over the fond memories but never took it home.

This year I packed the bell in a box, wrapped it with my best holiday flare and brought it to a neighborhood Yankee swap where we were encouraged to gift a “useful” household item we no longer needed or wanted.

Finally a perfect, guiltless way to be rid of the relic!

But no sooner was it chosen did my heart sink in my chest. My neighbor fished it out of the box and examined the banged up bell with the dangling S hook wondering what on earth it could be useful for while it’s meaning to me was suddenly clear.

As it struggled to chime out the melody for the amused but confused gathering of onlookers my father lifted me up to reach the bell in all its glory. Cradled in daddy's arms I could feel him hugging me, lifting me cheek to cheek I could smell Old Spice on his neck, and hear him whisper, “does daddy’s little girl need to reach that bell? There you go, you pull that string.”

It took only a few seconds for my daughter-in-law to emerge a true hero of the evening. 

“I’ll take it,” she said without hesitation swapping a perfectly good gift.

And so the bell is back where it belongs, in the heart of a family that knows the true meaning of the holiday is not about things shiny and new, but making memories to hold dear for a lifetime.

Merry holidays to all.

Oh Christmas Tree . . .

It was our first Christmas in the new Mashpee house on Route 28 and I was 12-years-old. Up till then each year my father would take us to buy a fresh cut tree at a vacant lot from a sketchy holiday hawker. Dad always made a big deal of shopping for the tree. A seeming authority asking the hawker about specific varieties like the Scotch pine, blue spruce, or balsam fir, examining the potential of each one, holding it out at arms length, turning it about like a model on a runway. Then he would ask us, “what do you think of this one?” We would check for bare spots then pick the one with the best shape and fullness and dad would strike a deal with the hawker.

Not so in 1972 when we moved to Mashpee where my dad was convinced we could forage for just about anything. In many cases he was right. Quahogs from Punkhorn Point, deer from Camp Edwards, herring from Mashpee River – but Christmas trees?!

Before we moved to the Cape we could always tell when we were getting close to Mashpee when we recognized the scrub pines on the roadside defined by delicate branches, long soft pine needles, and crooked and stunted growth. Not exactly tannenbaum material.

My older brother Steve and I were skeptical and my mom expressed herself with the same kind of “oh Russell,” she sighed when he bought a sports car that would only accommodate one of his four kids at a time. (My father’s logic often escaped my mother but the Triumph Spitfire turned out to be a true stroke of genius enabling him to get quality time with us individually. And for us kids, even a trip to the dump in the “navigator’s seat” became a much sought after privilege.)

“Humph!” my dad issued a taunt to the doubters as he handled his axe and he and young Russ, who we called Rusty back in the day, trudged off into the Mashpee River woodlands in search of the family’s holiday tree.

A short time later they returned dragging a stout scrub pine behind them. From the warmth of the dining room my mother, brothers Steve and little Robert and I observed through the sliding glass doors as dad and Rusty propped the tree up on the deck. Gripping the top dad tried to twirl it like the ones the holiday hawker sold. Spindly at the tip, wide at the bottom and bare in the midsection, the tree managed a half turn, bowed and stalled at my brother’s knees. Rusty was grinning with pride.

Steve looked sadly at the tree and shook his head, “How pathetic…”

But the pitiful tree would not be denied. As my father stoked a fire in the hearth, we decorated it gingerly draping lights and hanging ornaments the tree could barely sustain to try to achieve the holiday flair of Christmases past. My mother actually cut some branches from a tree in the yard and attached them with duct tape to fill an obvious gap. Even Steve got into the act artfully distributing the contents of a box of tinsel he claimed would hide a myriad of sins, not to mention duct tape. Finally, wrapped in tissue at the bottom of a cardboard box storing our decorations I found the star that had topped our holiday tree as long as I could remember.

“You put that on there and the whole thing is coming down,” Steve said.

He was right. We put the risky star on the mantle, plugged in the lights and stepped back to admire our work. It was no fraser fir, but the scrub pine with its delicate branches, its pungent evergreen scent, wispy needles, and duct tape experienced a metamorphosis not unlike Cinderella on her way to the ball. And so I guess, did we.

Adapting our expectations, employing vision and creativity and an appreciation for a gift from the creator, the pitiful scrub pine became a thing of beauty and a cherished family memory.

May all of you be delighted by the unexpected and experience a memorable holiday season filled with the love and joy of family and friends. Merry Christmas and happy New Year.

* Republished from December 2011