Jessica’s Friend Network

Jessica’s friend network highlights the Importance of friends when you are facing life challenges. Sometimes friends become family by choice not by blood.  I never expected three special women to include our daughter, Jessica, in their friend network. But there I go again thinking it’s all about me – I suddenly realized that this not only my circle, it is Jessica’s Friend Network.

Jessica

My husband Mitch and I married in 1979, and our first child, Jessica, was born in 1982. Mitch and I could not predict that our life would never be the same once our eldest daughter was born with a rare chromosome deletion (1Q 43-44).

At eight months a pediatric neurologist confirmed that Jess was delayed in every milestone. Jessica received her formal chromosome diagnosis much later in life.

Jess cannot walk or speak with words; she needs assistance with all daily life skills. However, our daughter is not an inventory list of her needs. Rather, she is sum of all her talents. Jess is musical, enthusiastic, charming, and loving. Without a spoken word, she brings you into her friendship circle.  Smiles, facial expressions, hugs, and screams of glee let you know that Jessica is happy to see you!

Jessica moved into a group home when she was 25; the home is two miles from our house.  (For more information on the hard decision of moving to a group home, please visit vickierubin.com

Ya Gotta Have Friends (Now you will be singing all day!)

Jessica’s friend network is not just unique, it’s rare. The intensity of their feelings for Jess is something I never expected, and it’s a testament to the depth of their commitment.

COVID Visits

Thank You?

I always express my gratitude when Jess’s friends visit. Their response, however, continues to humble me. They’re not doing this for me; they’re doing it because they’re friends with Jess and her housemates. As I said before “It’s not about me!”

When your child has significant needs, it is sometimes hard to view them independently. I often think of Jessica as an extension of myself. But I am wrong. Even though Jessica has so many limitations, she also possesses numerous gifts. She lets people know they are cherished and appreciated. We could all use that gift; the world would be less hostile.

So, I need to let go of the notion that Jessica is a child and see her as a charming adult, living as independently as possible.

Adversity Opens Doors

I am unsure how it happened that Jess and I were blessed with special friendships. Adversity in one’s life also opens doors to seeing the capacity of others to care. I know Jessica’s superpower is creating friend networks. Her reaction to people she loves is off the excitement meter charts. Without speaking a word, Jess will tell you very clearly that she is happy to see you.

As Jessica’s mother, knowing that others adore our daughter and see the love Jess gives back is monumental.

Our Friend Network

See, I’m not even in the photo! It’s all about Jess!

Mitch and I share a group of cherished friends; each respects and accepts Jessica. However, there is a unique Friend Network that embraces Jessica independently of us; as I said before, it’s not about me or us. Jessica’s friends embrace Jessica as their chosen family member and friend, and we are forever blessed and grateful for their bond.

Your Turn! Would love to hear your comments

Balancing Personal and Professional Goals as a Parent  of Child with Special Needs

Parenting a child with disabilities or special needs brings unique challenges and responsibilities that can impact both personal life and professional ambitions. Achieving a balance between these two demanding aspects of life requires thoughtful strategies and practical adjustments. Here are some effective approaches to help you navigate this complex journey while keeping your goals and well-being in focus.

Mastering Task Management

The art of prioritizing tasks is crucial in managing your time and energy efficiently. Start by identifying the most urgent and important tasks, both at work and at home. This might mean scheduling medical appointments or therapy sessions for your child before addressing less critical work tasks. Utilize tools like digital calendars or task management apps to keep track of deadlines and appointments. This way, you can ensure that you’re not overlooking any responsibilities and are making the best use of your time.

Enhancing Your Living Space

(more…) “Balancing Personal and Professional Goals as a Parent  of Child with Special Needs”

A NEW RV?

Please save us! October, 2023- Mitch and I decided to sell KanVan, our EKKO Winnebago RV. We saw the country, were attacked by flies, met terrific people, and learned how to work a cassette toilet, and it was time to move on, literally. We agreed that if we were to travel by road, a rental RV would be our solution.   And then….

OPEN HOUSE

Driving along the road, Mitch and I noticed a really cool RV for sale.  “C’mon, Let’s check it out!” I said. I know, I know ~ we are done with RV ownership. Well, I guess we can take a look – kind of like visiting an open house.

Let’s just see….

WOW

(more…) “A NEW RV?”

WOW! Memorial Day Wishes and Kind of a Writing Break

WOW! Acronym for Women on Writing . And what I will be doing for the next month!

Book Promotion is not for the weak or weary. Sometimes, I feel like giving up on the promotion side of things, and then (almost every time) I receive an email, a post, or a face-to-face encounter with somebody who cherished my book and its message, which keeps me going.  Last week, I met a young mom who read my book and said she saw so many similarities; it helped her immensely.  With tears in her eyes, she said she would read it again.  

So how can I give up?

WOW!

I can’t give up. So, I wrote to WOW! Women on Writing. And I am entering their program. (Sounds like Rehab. Maybe Rehab for bloggers! )I need to write 15 blogs within the next month. That’s a lot of writing.

WOW!

Huh?

Don’t give up on me while I take a month off from writing to write- Yeah, that makes no sense. But hopefully you know what I mean.

Memorial Day

I hope you enjoy your weekend and pause to remember those who have served on this Memorial Day. And of course take time to enjoy your freedom, eat too much and smile like Jessica!

WOW!

The Story of a Late Diagnosis and Writing Your Memoir

Thank you, Ronit Plank for the Interview on The Gift of a Late Diagnosis. Scroll to minute 21:09 for a special reading of the Gift of Grandparents.. Let’s Talk Memoir and the process of writing.

Let’s Talk Memoir

Let’s Talk Memoir with Vickie Schlanger Rubin – a conversation about raising a child with medical complexities and intellectual disabilities, submicroscopic chromosomal deletion, marriage struggles, incorporating clippings, news articles, and photographs in memoir. Including what to do when you feel something is wrong with your child, her career in the helping field, and advocating for other families and herself. The gift of a late diagnosis, the decision to move her daughter to a group home, and her memoir Raising Jess: A Story of Hope.

Retirement Does Not Mean Retiring from Life (& OMG! I’m on PBS!)

Ready to redefine retirement? Retirement does not mean retiring from life. It’s an opportunity to rediscover forgotten interests. First Off, How did I get on PBS?


Producer – Lukia Costello Principal Photography – Steve Rosenthal

How Did This Happen?

I was minding my own business when I received a call from Mara G., a friend from my community. Lukia, producer and interviewer of Aging Together, contacted Mara G., seeking a person of a “certain age” who may be interested in an uplifting PBS interview. Mara suggested me!

The PBS series is called Aging Together in New York. My immediate thought was – geez, am I that old? And Although, I don’t feel that old, maybe that’s what this interview was all about. Aging does not mean stopping, And At the age of 66, I am old enough for this interview. I didn’t even need to show my ID!

I loved every minute of the video interview. Lukia was easy-going, prepared, calming, inquisitive, and an all-around great interviewer.

The doorbell rang and Lukia and Steve entered our home. They surveyed the area for lighting and background. Steve, an experienced photojournalist, carried in all his equipment, which was both intimidating and fascinating! Together, Lukia and Steve worked their magic, and I am so grateful for the opportunity and the final 2-minute message.

My House Became The Studio

Aging is a Privilege

I am thankful for the amazing opportunity! And if you are watching PBS, let me know if you see my 2-minute PSA on Retiring to Something!

Thank you, Lukia Costello, Steve Rosenthal, and Buffalo Toronto PBS Aging Together Series, for the fantastic 2-minute PBS Buffalo/Toronto interview!

Funding for Aging Together was provided in part by the New York State Education Department. Find out more about senior isolation and the Aging Together in New York initiative. Visit https://www.wned.org/aging-together-i… Visit http://www.wned.org

Vickie Rubin, M.S. Ed. is the author of the award-winning memoir Raising Jess: A Story of Hope, published by Page Publishing. This heartwarming story describes the joy and challenges of caring for her daughter, who was born with a rare chromosome deletion. Vickie’s debut memoir won the 2022 Readers’ Favorite Gold Medal Award for Non-Fiction and was a Finalist in the Best Book Award and Books Excellence Award for inspirational memoir. Her stories have been published in Newsweek, as well as In disability-related publications and opinion pieces. Vickie started writing her humorous blog in 2020; she writes regularly about raising a child with a disability, family, marriage, and RV Travel.

NYT Quiz

Is it Friday already?  Did I read enough news?  Did I memorize the correct facts?  Am I ready for my weekly New York Times (NYT) Quiz, and more importantly, will I be able to share my score? The NYT Quiz has become a thing for my dad, brother, and me.  I recently added my son-in-law and daughter-in-law’s sister to the unwritten competition. 

cute rabbit with eyeglasses
Photo by Anna Shvets on Pexels.com MAYBE THIS WEEK I’LL STUDY!

Shiny Object

I try to read and keep up with the news, but you know, the phone rings, a text Bings, a dog barks, an email chimes, a shiny object flies by, and I am out. And then Friday rolls by, and I need to compete with my family to show myself and them, that I can still retain information. 

There are two problems: the NYT is a bit tricky, when a topic comes up and I think they are asking something I know, the NYT goes and asks some obscure question about the topic.  “No Fair,” I say out loud to the dogs.  I knew this one.  And it’s multiple-choice! JEEZ!

It’s Not Cheating

Some Fridays, I take the CNN 5 Things quiz as a prep for the NYT’s Quiz. I don’t call that cheating because it’s a quiz, not a cheat sheet.  I typically do very well guessing the correct answers.  Recently, CNN stopped sending me their Five Things newsletter – Did they suspect I was using them to improve my NYT scores?

This past week was very busy and I didn’t have much time to digest the news.  I awoke at 6 AM and opened the NYT quiz.  Uh Oh!  The first question was wrong.  Ok, I’ll keep going.  Hmm, the third question is wrong. 

FLASHBACK Quiz

We recently added the NYT Flashback Quiz. My brother, Keith, consistently out defeats me. The quiz starts off with an mysterious facts and gives you the date ranging from BC times to current. Next, a new detail flashes and the participant must determine if it happened before or after the fist fact. Are you following me? Eithg more facts pop-up individually, as you place (Guess) them in chronological order.

HERE’S A FLASHBACK!

Next Week, NYT Quiz

So, I decided to take a bi-week. And vowed to pay more attention to current events next week.   Unless, of course, the phone rings, a text Bings, a dog barks, an email chimes, a shiny object flies by.

I hope you read my article thoroughly, there WILL be a quiz next week!

Vickie Rubin, M.S. Ed.  is the author of the award-winning memoir Raising Jess: A Story of Hope published by Page Publishing. This heartwarming story describes the joy and challenges of caring for her daughter, who was born with a rare chromosome deletion.  . Vickie’s debut memoir won the 2022 Readers’ Favorite Gold Medal Award for Non-Fiction and was a Finalist in the Best Book Award and Books Excellence Award for inspirational memoir. Her stories have been published in Newsweek, as well as Disability related publications and Opinion Pieces.  Vickie started writing her humorous blog in 2020; she writes regularly about raising a child with a disability, family, marriage, and RV Travel.

Jessica’s First and Last Hip Surgery: A Lesson in Advocacy

The date was May 1, 1990. Our daughter Jessica was scheduled for her first and last hip surgery. The decision to put our eight-year-old first child through major surgery was agonizing.

Unexpected Challenges

Jessica was born on April 11, 1982. She was delivered on Easter Sunday. My contractions peaked while I scratched my future chicken pox scars. Yes, after 24 years, I finally caught chicken pox while birthing my first child! Nine months later, we discovered Jessica had multiple cognitive and physical disabilities, ironically unrelated to Chicken Pox. Eight years later, her first and last hip surgery, and 21 years later, confirmation of a rare chromosome diagnosis. Many unexpected Challenges

Advocate
Cuteness
(more…) “Jessica’s First and Last Hip Surgery: A Lesson in Advocacy”

I’m Not A Whippet -A Tail of IGGY Misidentification!

Let’s set the record straight! I am Not a Whippet (Not that there’s anything wrong with that) Today’s Blog is in the words of Daniel our Italian Greyhound.

My name is Daniel, and I am 11 years and 11 months old. I am an Italian greyhound, also known as an IGGY. I am aware that I am a unique-looking and behaving dog. Here is my Story.

Each spring, my humans take me to the Florida Keys. Although Mom is not a huge fan of Florida, Dad is an avid (feel free to use obsessed) salt-water fisherman. So they schlepp me along with them annually because what else are they going to do with me?

“Bone” Appétit!

Let me paws a moment before you think I am ungrateful; I’m not. But traveling is very Ruff on my IGGY constitution. I lost some weight, which is not ideal since my bones already stick out. I didn’t feel like eating, and I will spare you from the other deTAILS. So my humans brought me to the emergency vet, and the diagnosis was gastric anxiety – so similar to my people. I am now on Pepcid and eating chicken each day. Sometimes, I dine on Mahi Mahi. Not a bad gig.

(more…) “I’m Not A Whippet -A Tail of IGGY Misidentification!”

Epiphanies of a Writer: My Top Seven A-Ha Moments

What is it like to author a book? How hard is it to promote a book? It has been quite a journey. Epiphanies of a writer, the top seven A-Ha Moments from writing the memoir , Raising Jess a Story of Hope, in no particular order.

1. The D -Words

The day I decided to write Raising Jess, I got up at 6:00 AM and wrote a chapter. Little did I know that I would do this almost every day for four years. Retirement from my career running a state-funded grant in Western New York lasted a fleeting time as I ventured into a new profession of writing .

Documenting our family’s story took Dedication to the goal of finishing the book and the Discipline to write as if I were going to a job each day. It didn’t hurt that Covid was raging during some of the years. What else was there to do but continue writing?

2. Can’t I Just Write the Book?

Who knew writing would be the easiest part of this journey? Who knew that Promoting and Marketing is harder than writing. Fellow authors, that’s who! There are numerous ways to market your book; some work, and many do not.

Following the buzz of the book’s debut and the flurry of “Look, I wrote a book!” marketing efforts, a wise individual emphasized to me the importance of providing information about the topics in the book.

She said, “You are an expert. What can you share?” Provide information as points of interest and learning – then you can mention, “Oh, by The Way, you will find more information in my heartwarming and humorous book, Raising Jess. (notice the not-so-subtle plug) Going online and posting, “buy my book,” is never enough. Although, I confess I do that too! A lot! This article is one of many that give suggestions, and if you have great marketing ideas, please share.

3.  Thank You, Readers

(more…) “Epiphanies of a Writer: My Top Seven A-Ha Moments”

What She Really Meant by, “Do You Play Sports?”

You may remember my blog about how my husband Mitch’s hearing aids cured my mumbling.  Well, he is no longer using hearing aids and mumbling has returned.  A scientific phenomenon that will take years to figure out.

Last night was the icing on the proverbial cake and I it had nothing to do with me!

(more…) “What She Really Meant by, “Do You Play Sports?””

Candlelit Glow of Remembrance and The Empowering Fist Pump

My beloved Mom, DiaNNe (with two N’s, or you will hear it!), battled Alzheimer’s. This year is my mom’s fourth Yahrzeit, the anniversary of her death. The date is based on the Hebrew calendar, a lunar datebook with 29 monthly days alternating with 30 days. It’s too confusing for me to calculate, so I rely on the reminder from the Temple each year.

Tradition

There are certain religious traditions that I follow. One of them is honoring family members who have passed by lighting the Yahrzeit candle.

After Mom’s funeral, my dad, brother, and I were given a large candle in a tall glass container to light at home.  The flame remained for seven days, symbolizing the seven days of mourning.

I spoke to that flickering candle each morning, “Hi, Mom. I’m thinking of you.” Later, I discovered that my dad and brother were also conversing with their candle. Great Minds? Genetics? Or A bit Nuts?

(more…) “Candlelit Glow of Remembrance and The Empowering Fist Pump”

Princess Diana, King Charles, and Me

I was a Princess Diana Fan. Wasn’t everybody? I wasn’t much of a Prince Charles (now known as His Majesty the King) fanatic at the time.  Diana and I had more in common; she taught young children, and I also have a degree in early childhood. If that isn’t enough, we had our kids at almost the same time.

Prince William and our daughter Jessica were both born in 1982. Formerly known as Prince Harry and now Duke of Sussex, and my son Alex (a prince in our eyes) were born in 1984. If the marriage had lasted, maybe Diana would have had her third child in 1987, just like I did with my daughter Carly.

I know it’s hard to tell the difference, Jess and I are the second photo.
Raising Jess
This is Jess and I, just in case you couldn’t tell…
(more…) “Princess Diana, King Charles, and Me”

Signed Copy – FREE FEBRUARY GIVEAWAY

TODAY ONLY! Get a signed copy of Raising Jess A Story of Hope by Vickie Rubin for FREE. I will pick three winners by Friday! Fill in entry form below for your chance:

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Thank you for your response. ✨


Letting Go: The Group Home Decision

This is our group home story. A decision woven with uncertainty, love, and, ultimately, acceptance. Was the group home decision also a decision of Letting Go? These are frequent questions I receive from families and podcast hosts, and a story worth sharing. How we went from It’s Never Happening to a Leap of Faith. An Excerpt from Raising Jess: A Story of Hope.

NEVER HAPPENING

When Jess was first diagnosed, I had horrible “day-mares” (I was awake) about babies left alone in Willowbrook State Institution.  If you grew up on Long Island or in the New York Metro area, you knew about Willowbrook.  The State Institution existed from 1947-1987 for children with intellectual disabilities but in those days, they classified the children as mentally retarded, or worse descriptors.  Although the school was supposed to house 4,000 individuals, it ultimately had a population of 6,000.  Conditions were appalling, and it closed in 1987 when federal civil rights actions started protecting individuals with disabilities.

For Parents
GROUP HOME???

At night, I would lay in bed and think horrific thoughts and made a vow that Jess would never go into a group home. Mitch was on the same page as me, although I am not sure that he was going through the same Willowbrook scenarios that ruminated like a looping video in my mind.

(more…) “Letting Go: The Group Home Decision”

Domestic Dishwasher Duet: Tetris Architect VS. Chaotic Mess

January 1st, New Year’s Day, is a time for new beginnings, even though it’s just the day after December 31st. Like the first day of school, it’s an occasion to start a new page. Such as, this year, I resolved that I will have better time management skills. I will attempt to put things away as soon as I am done. Most importantly, I am going to figure out how to do the Dishwasher within the strict parameters of what Mitch thinks is good placement. We have a daily Dishwasher Duet – Fastidious Tetris Style VS Chaotic Mess (it all gets clean in the end.)January 1st, New Years Day, a time for new beginnings even though it’s just the day after December 31st . Like the first day of school, it’s an occasion to start a new page. Such as, this year I resolve that I will have better time management skills. I will attempt to put things away as soon as I am done. Most Importantly I am going to figure out how to do the Dishwasher to the strict parameters of what Mitch thinks is good placement. We have a daily Dishwasher Duet – Fastidious Tetris Style VS Chaotic Mess (it all gets clean in the end.)

(more…) “Domestic Dishwasher Duet: Tetris Architect VS. Chaotic Mess”

2024

A blank slate to start- as we enter 2024

A metaphorical closing of 2023’s door


What are our hopes and dreams for this year

Of course, Health, Happiness and Peace – that's clear


But if I sit down and ponder the world’s turmoil

It’s enough to make one recoil


How will  Israel's war end 

How will Jews around the world defend


Who will be president -the choices are bleak

From lawless man to somebody past his prime, how did we get so weak


And then there are women defending their choice

And the authoritarians who will not listen to their voice


 I also see my family and grandkids which boosts me high

There is always hope, when I look through their eye


So, I wish you health, happiness, and peace my dear

Our world has seen worse and recovered far and near


May this 2024 bring change for women and men

And may we all say together a hearty AMEN

Photo by Lisa Fotios on Pexels.com

Club Cuisine Crisis: Eating Interruptus

When visiting my dad in Boca Raton, we must be prepared to eat. I’m not talking about three square meals; I mean EATing ~with capital letters ~ in paradise, also known as the club. However, while dining this past weekend, we encountered a Club Cuisine Crisis; let me explain.

Getting Ready for the Eating Extravaganza
(more…) “Club Cuisine Crisis: Eating Interruptus”

Happy Anniversary, Mitch

Happy Anniversary, Mitch. Today, December 1, 2023, is our 44th wedding anniversary.

Mitch and I were married in 1979. I remember when our parents were married for 25 years, and we thought that was unbelievable. 25 years sounded like an eternity, considering we were married for only 6-months. And now our marriage is 44 years, 16,060 days, 385,704 hours (actually, I thought it would be more), 23,126,400 minutes old! But who’s counting, anyway?

The ceremony was shortened , because Mitch couldn’t stop hyperventilating.
(more…) “Happy Anniversary, Mitch”

RV Trip Part Two, Fun Facts and a Surprise Ending

OK, now that we got all the repairs, hospital visits, and other nonsense from my last blog out of the way, I want to let you know about the good parts of the trip, Fun Facts and a surprise to both of us.

Rocky Mountain High

We drove through the twisty, turny Rocky Mountains to Grand Lake, Co. I now get it when I hear Rocky Mountain high, and it is not weed-related. The altitude changes everything from your capacity to breathe and walk simultaneously to pressure in your sinuses from the thin air. (Self-diagnosis)

Well, for some it may be weed related – mitch and I were just trying to breathe.
(more…) “RV Trip Part Two, Fun Facts and a Surprise Ending”

My First Pair of Fancy Shoes- Thanks, Mom

I know, I know, I have talked about purses in my blog. Yes, it’s shallow but still fun, right? However, I never spoke about My First Pair of Fancy Shoes. When my mom passed away in February 2020 my father and I had the hard task of going through all her clothes and belongings. And I found a surprising revelation.

I’m not sure where I got this desire to have designer anything; my mom was not into these kinds of purses and thought it was a big waste of money. (True Words)

(more…) “My First Pair of Fancy Shoes- Thanks, Mom”

The Beginning of the RV End: I Want to Go Home!

I admit that I was ready to abandon our trip four times before finally convincing my husband, Mitch. MAYDAY! When pushed to a point, I can be very persuasive or, as Mitch may say, annoyingly relentless. But I was DONE! This is the tale of the beginning of the end of our RV trip and KanVan our RV.

The First Time I Wanted to Go Home

September 27, 2023, we started off driving straight to Colorado.  Thirteen hours on day one to Iowa. My Apple Watch was on high alert, yelling at me using messages.  What happened to your 12K steps?  What are you doing?  Aren’t you standing? What’s going on?  How do you explain sitting for endless hours driving to a watch? I should have ignored the messages.  Was this an omen of things to come?

September 28, our water pump failed , and we were fortunate to find a genius with poor-fitting pants to modify the pump with an external on/off switch. Will not be able to use the shower for the duration of the trip. Let me clarify that, we will not be able to shower in the RV for the remainder of the trip. The repair company was extraordinary and didn’t charge us for all the time spent working on our rig. We continued the drive and arrived in Colorado at 7:45 P.M. Mountain Time, but my stomach was still on 9:45 p.m. Eastern Standard Time. Mitch does not need to eat at regular times; no problem for him to eat dinner at 10 p.m. and then go to sleep!

Mitch’s face says it all!

The second Time I Wanted to Go Home

On October 3, five days into our trip, we lost all electricity. We found another repair shop, but they could not fix the RV. All hotels were booked we had no lights, heat, refrigerator, outlets, or water. We bought ice for our cooler and hoped all our food from the refrigerator would keep. It was cool that night and we slept in our clothes with three blankets; it was surprisingly comfortable, in the middle of nowhere, until Mitch woke up with Afib -!!!AHHH – His symptoms only lasted two hours and he is on meds to reduce the risk of stroke; BUT all I kept thinking was, OMG! How would I get help if needed – it was unsafe to drive in the area at night. I had an occasional bar on my phone, so perhaps an SOS call would work!. Thankfully he was feeling better in two hours. The next morning, I told my dad that Mom visited me from above and said, ” What the F@#$ are you doing? Go Home!

Whatever gets you through the night!

LUXURIES

Mitch insisted we don’t need luxuries! My reply was when did electric outlets and water become a luxury?

Cross-Country Trip
DID YOU SAY NO WATER AND ELECTRIC? SO, WHAT’S THE BIG DEAL?

On October 4, we survived the night and returned to town, where we found an electric genius to work on our RV.  He was able to get our lights and refrigerator to work.  We still did not have use of outlets; therefore, we had no microwave, or ability to charge the laptop, and no air conditioner.  But at least we had our refrigerator, some water, and lights.  I bought a French press for coffee and boiled water on our gas stove. We bought inverters for the cab cigarette lighter ports (old school), and we could charge phones and iPads using the inverter. By the way, this genius also would not take any money for his work; all he wanted was beer.

Inverter

The Third Time I wanted to Go Home

October 9 – We spoke to the dealer about all the issues and determined we would drop off the RV on the way home. We continued to Santa Fe, and it was hotel night! We typically stay in a hotel once a week, typically centered around a Bills Game and good reception. But this was an exception. We finally got to the INN, and Mitch turned left into their parking lot!  BANG, SCRATCH! WHOA!

There was an overhang on the roof’s eave – no warning – and we (he) gashed the side of the RV.  I insisted to Mitch that the universe was telling us to go home! Mitch spent most of the day doing repairs and did a fantastic job. And, we are continuing….

UH OH!!!!
WOW! Mitch, I am impressed!

The Fourth Time I Wanted to Go Home

Our next stop was an RV park with five stars!  We pulled in and I thought Mitch was joking.  It looked like a junkyard in the middle of nowhere.  The gentleman who lived at the lot heard me talking and said, “You sound like a New Yorker; I can tell by your attitude.”

5-Stars?

We paid him and pulled into our spot (the only RV there), and I told Mitch that we were out of here!!!!!  Once again, it took a while to convince him…but I found another RV lot, and we left. 

Mitch got really sick that evening.  Food Poisoning?  Stomach Bug?

Trying Not to Catch This Bug!

But after 24 hours, he was lethargic and needed to go to the ER to rehydrate! The ER was in Winslow, Arizona. Think Eagle’s song.

I was not TAKING IT EASY in Winslow Arizona!

The facility was amazing, and the doctor, who lives in LA and works in Winslow eight days a month, was fabulous. She was concerned that Mitch had migraines since we had been traveling, so she ordered a CAT Scan of his brain. So yes, we went to the ER for stomach flu and ended up with a CAT scan of his brain. No brain bleeds!

BUT THAT IS WHEN I SAID ENOUGH! And so, these two wandering Jews headed home. Our RV went to its birthplace in the middle of the country to get fixed and brought back to life – factory-new!

Keeping it Real

This blog is for a bit of entertainment. I realize that the issues discussed above are a mere trifle compared to everything happening worldwide. But sometimes you need a bit of distraction…. My next blog will talk about all the wonderful sights we visited because we did see some great areas in our beautiful country.

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out my 3-time award-winning memoir,  Raising Jess: A Story of Hope! Five star ratings on Amazon!

I Stand with Israel

We are on an RV trip, so many weird, funny, not-so-funny, and beautiful events have happened. Yet, I can’t write.  Every time I put pen to paper, oh wait, that’s old school.  Every time I put my finger on the keyboard, I am overwhelmed with the sadness and horrific scenes from Israel, and I stop. My thoughts are with Israel. I stand with Israel.

Standing IN Israel

How can I retell a funny anecdote while bombs and terrorists are killing our brothers and sisters? I stand with Israel.

Flying to Israel

If you have read my blog, you already know about my fear of flying. Yet, in 2008, I boarded a plane with 60 women from New York and flew to the Holy Land. (Yes, even in 2008 I wore a mask, thrombosis socks, and consumed a lot of medication to get on the flight, but I did it!)

Slept my way to Israel

The first thing we did was plant a tree. Planting a tree is a symbol of hope, love, and life that will last generations. So, somewhere in Yisrael is my contribution. I stand with Israel.

(more…) “I Stand with Israel”

Music Therapy Becomes A Love Language

Music is our daughter Jessica’s love language. She speaks it fluently. Jess is 41 years old, nonverbal, and has a rare genetic deletion (1Q 43-44). She lives in a group home with five other women who have become family. (Article in Today’s My View )

Jacob is Jessica’s music therapist and part of a local creative arts group. Music therapy is an evidence-based practice that uses musical interventions to reach an individual’s unique goals. Think of speech, occupational and physical therapy all within a music class, and you have music therapy.

Jess and Jacob making a melody

Kay is one of our daughter’s housemates, and a few weeks ago, she let us know with a nod and a smile that she wanted to watch Jessica’s music session. Kay is in her mid-50s and nonverbal but can communicate with a picture board and head nods.

Jacob was singing to Jess, and he turned to Kay before singing the song’s last word. Kay immediately uttered a sound to complete the tune, and her glee and pride were enlightening. Jacob immediately recognized Kay’s love of music and was able to elicit additional singing with his therapeutic skills. After that session, Kay started taking weekly music therapy.

Jacob asked me when I first noticed Jess humming tunes. Oddly enough, I had no memory of the first time. However, my son Alex immediately reminded me that it was “Jeopardy!”

Many years ago, Jessica visited a respite home for one week. As we drove Jessica home, she started humming the “Jeopardy!” theme song. At first, Mitch and I were a bit astonished. Is this really “Jeopardy!”? Is Jess making up a tune that sounds exactly like “Jeopardy!”? We did not regularly watch “Jeopardy!”, so Jess did not learn the tune from us. I called the respite house and asked about their “Jeopardy!” viewing habits. The staff told me that the daily “Jeopardy!” theme resonated through their home.

Afterward, Jess and I started communicating through music, where I would hum the first line of a tune, and she would follow with the second line. A musical conversation! That was the beginning of what is now close to 30 tunes in Jessica’s repertoire — the beginning of Jessica developing her musical love language.

Several weeks later, I sat down to play the piano with Jessica. Kay indicated that it was her turn at the piano, and she wanted me to play with her. She pointed and vocalized until I received her message. We did a couple of simple songs because that’s all I can do, and her face lit up.

At the same time, another housemate was sitting with us and cheering for both Jessica and Kay. She enjoyed watching her friends discover music as much as they enjoyed creating music. The women are not just housemates; they are chosen family.

I was in awe of both Jessica’s and Kay’s talents and competency once they were given an avenue to express themselves.

When Jessica was first diagnosed with an intellectual disability, I mistakenly, as a new and inexperienced mom, thought it meant that she would stop learning new skills. She disproves that theory daily. My memoir, ‘Raising Jess: A Story of Hope,’ shares the heartwarming and humorous narrative of our family’s transformation while raising our daughter with a rare chromosome deletion.

Once people meet Jessica or Kay, they often summarize what both women cannot do. I hope new acquaintances open their minds and hearts to see our daughter’s abilities, talents and intellect. I love that Jacob appreciates, values and encourages new skills and opportunities for his students. Music is Jessica’s love language, and we love that we can sing along with Jess.

Article In Buffalo News

For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir,  Raising Jess: A Story of Hope!

Who’s (Really) the Boss? Distinct Roles in Marriage

A year has passed since we took our Winnebago EKKO RV (KanVan) for a spin across the northern plains of America. We are planning another trip, and I am exhausted from all the work. Not my work; I basically do nothing. It’s mostly my husband Mitch who is in the trip-planning lead. As a result of Mitch working so hard, I had time to think about our distinct roles in marriage, from travel to our daughter’s special services and Who’s (Really) the Boss?

Watching Mitch plan and prepare is exhausting. He is an expert at navigating our roads across the country. On the other hand, in the RV, I am an expert at checking my phone, napping while he drives, checking my phone again , eating, and stopping to use our facilities, it’s a good thing our bathroom travels with us.

This is our dynamic. Mitch is our travel agent, booking agent, navigator, predominant driver, parker of RV into tight places, cleaner of all nasty hoses and cassette things, and pretty much everything else. What is my role? I am good at cleaning! I also do some laundry and cooking.

Albuquerque Balloon Fiesta

(more…) “Who’s (Really) the Boss? Distinct Roles in Marriage”