How Would you Cope if Told Your Child has Severe Multiple Disabilities?

Here is a new podcast where I talk about how it felt to be told your baby has multiple disabilities, overcome panic attacks, and search for a diagnosis. Carol Graham from Never Ever Give Up Hope and I discuss how to communicate with a person who does not speak, for although somebody says no words, that does not mean they do not understand.

𝘛𝘩𝘪𝘴 𝘱𝘰𝘥𝘤𝘢𝘴𝘵 𝘪𝘴 𝘧𝘰𝘳 𝘺𝘰𝘶 𝘪𝘧 𝘺𝘰𝘶’𝘳𝘦 looking to hear an upbeat story about A Family changed forever through Hope and Perspective.

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The Most Peculiar Thing We Received and Do

The Vet specialty surgeon called to inform us that Daniel, our Italian Greyhound Dog, was doing well.  He told me about the procedure and ended the call with a note about an unrelated piece of information. I would learn more later about the most peculiar thing I ever received. (Part two from the last blog TLC Canine)

MOST PECULIAR THING WE RECEIVED

Daniel started developing a growth under his chin. We went to his regular Vet, who drained it, but the bump kept returning.

Weird
Blue Arrow Pointing at Mass (Not the person’s fun beverage in the background!)
weirdest
Profile

Finally, the Vet sent us to a specialist surgeon who surprisingly suggested surgery. Daniel had a salivary gland that was out of control – the excess fluid was causing the growth under his jaw. For those who understand the lingo, Me Not Included!- – Daniel had a Ruptured salivary mucocele with free saliva, granulation tissue, and lymphoplasmacytic sialoadenitis

Long story short – we did the surgery in May 2021 on the left salivary gland, and it turns out the left was the wrong salivary gland, and the surgery needed to be repeated on the right salivary gland which was the “right” gland in March 2022.

And here we are, second surgery in the same year – this time, it was successful.

weird
I am not happy with you!!!
Weird
I’M STILL NOT HAPPY WITH YOU AND THE CONE OF SHAME- BTW, IS MITCH DRIVING WHILE SLEEPING?

We came in to retrieve Daniel, and the Dr. who is retiring gave me a container with Daniel’s removed – not-supposed-to-be-there mass. The Dr. said, “Keep this for a year, and if Daniel remains good, you can toss it.” EWWW

Weird
EWWWW! Email me @ RaisingJessBook@gmail.com IF YOU WANT TO REALLY SEE THIS)

“You mean I need to bring this yucky thing home and save it in a safe place?” As I write this, I wonder where I put that thing? Ok, that’s for another blog – I hope the grandchildren don’t find it first.

The doc said he couldn’t throw it out, and it wasn’t worth a biopsy, but, “Keep it for at least the year, “… and since he was retiring…

Show and tell? Facebook post? Put it in a safe? Hopefully, I will not need to retrieve this any time soon.

ONE OF THE PECULIAR THINGS WE DO

On another odd Daniel note (and this is also a delicate topic), Daniel requires a “deflector.” What do I mean by that?

Well, it goes like this…. Daniel’s anatomy is configured so that when he goes number 1, it goes on his large chest. Yup, a direct target. Hence, Daniel received 4-5 baths a day – I even bought a shower head for our utility sink….

But then I had a brilliant idea, and since I am not trademarking it, I will share – Does anyone else really have this problem, anyway?

DID YOU REALLY NEED TO “TELL ALL” ABOUT THE PLATE?

A paper plate deflector! Yup. We walk, he lifts a leg, I bend down and target the plate, and the flow deflects from “hose” to plate to grass. I bet my neighbors wonder why I walk the streets with Daniel and a small paper plate.

By the way, this has become a honed skill. At first, I was not quick enough, not accurate enough, and don’t get me started about doing it at night.

A year or two have passed, and Mitch and I have our Ph.D. in deflection – our daughter and son-in-law are pretty good at it too….

So, there you go, the most peculiar thing I ever received from a retiring veterinarian and the most peculiar thing we do four to five times a day. Ok, dog lovers and owners, can you top these?

What is so Super about Daniel, Our TLC (Tender Loving Canine)?

Daniel is 10 in dog years and 70 in people years. Is there Dog Medicare? Because it would certainly help! Our furry son is an Italian Greyhound (IGGY) and our KanVan-Dog. Our third IGGY, we adopted Daniel when he was one, unaware of his superpowers. (I briefly wrote about Daniel’s career in the blog, An Unbelievable coincidence). It took several years for Daniel’s Tender Loving Canine (TLC) to emerge.

At first, we noticed his patience. Later he demonstrated his eagerness to please. Daniel’s singing voice was the cherry on top! He would visit our daughter Jessica’s group home and bring cheer to everybody.

Saint Daniel

Before I start putting up a shrine to Saint Daniel, I will admit that he is not as wonderful as other dogs when he is on the leash. He is what some folks call a yapper! Daniel does not hesitate to bark and yell his greetings when we are walking; he screams while pulling his leash to an embarrassing level of zest. If I let him meet the other canine, then all is good. 

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The Room Where it Happened

BC – Before Covid, the families would meet in Jessica’s house for many celebrations or no celebrations- we just gathered. Jessica lives in a Group Home with four other women, each having different Abilities. Years have passed since we sat side by side in the same Room. But this week, we were together again to share a blessed event. This is the story of what we discovered in The Room Where it Happened.

Torah

I received a text from Rabbi Ori, “I have a chance to bring a Torah to the ladies’ group home tomorrow in anticipation of Shavuot…” Getting a text that a Torah is coming to visit is as rare as saying, “Hey, come to my house. Moses will be there telling a story!” Maybe not that rare, but you get the picture. And the holiday is what I refer to as the cheesecake holiday! Sounds good, right?

The Room Where it Happened
The Torah
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Closer Than Ever to the City that Became Home- Buffalo

Today the Buffalo News printed MY VIEW in their My View section of the Opinion Page – Click Here

For more published articles or to see upcoming events, please click here.

If You haven’t already purchased, Raising Jess: A Story of Hope – Please consider a copy for yourself, a friend, a teacher, a therapist, a mom, a sibling, or a book lover…you can purchase it at all major online retailers.

Amazon link and Barnes & Noble Link.

RV Life from an “Occasionally”  Happy Camper

It appears I’m not the trooper Mitch wished I was; I still have some trooper-isms to learn. My can-do attitude and packing skills need a bit of adjustment. But, within two weeks, I morphed from not a KanVan RV happy camper to occasionally happy camper to mostly happy camper. 

GEAR?

Packing is the bane of our travel. A pre-trip conversation overheard by no one is about Gear! Not the kind that moves engines – we are talking sports – Mitch is concerned about his tremendous amount of sporting equipment: fishing, hiking, e-bike stuff, golf, and tennis equipment. He asked me what Gear I am bringing?” Um, just sneakers?” I hope he doesn’t ask how many purses? 

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Funny Replies – what YOU forgot!

I am thrilled to report that Mitch and I are not the only forgetful people in the universe! In my last blog, You Forgot What?” I told of an embarrassing story about forgetting our Hungarian Vizsla, and little did I know that many of my readers have similar stories. How comforting to know that we are either not losing our minds or, at a minimum, EVERYBODY is losing their minds simultaneously. What YOU forgot – Part 2

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You Forgot What? Gus the Dog’s Tail (Tale)

It’s taken a year to write this embarrassing tail (yes, pun intended). At first, my husband Mitch and I didn’t want to tell anyone for fear we were losing our minds. “You forgot what?” 

Mitch and I were in Great Valley, a town near Ellicottville, NY. Our plan was to meet our son Alex and DIL Joyce with grandson Griff at a dog meet-up party. This wasn’t an ordinary party; it was very exclusive.

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Another Skier in the Family

When I was 15, I learned to ski. I realized this weekend that I have been skiing for 49 years. One would think that I would be faster than a speeding bullet and able to leap tall moguls in a single bound. Nah, I am just happy that I get down the mountain in one piece. But I did find one superpower in skiing, the connection with family. And now there is another skier in our family!

Another Skier
Brady Getting Ready to ski at Holiday Valley, Ellicottville, NY


In the 1970s, my dad decided that he would learn to ski, and thus downhill skiing became our household sport. Well, golf was truly my parents’ sport but I rebelled against that boring game. Back to Skiing – We were only 4-hours from the steep vertical heights of Killington in the Vermont slopes. Mom would hang in the lodge (I hope I thanked her for doing that all those years), and my brother, dad, and I would traverse the mountains.

You Want Me to Ski That Mountain?!

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Did Motherhood Really All Start with Chickenpox?

Spoiler Alert – This is Chapter 1 of My Memoir: Raising Jess: A Story of Hope

KIRKUS REVIEW
KIRKUS REVIEW

(Rubin writes with clarity and thoughtful introspection, making for a truly enlightening read.” Kirkus Review)

On April 11, 1982, Easter Sunday, I was twenty-four years old and had chickenpox. And I was about to deliver my first child. ( Raising Jess: Did Motherhood really all start with Chickenpox?)

For a week, I  complained to my doctor about a rash. For a week, he replied, “The baby is settling. Do not worry;” or, “Just put some lotion on. It must be dry skin.” I was naïve, pregnant, unaware, and truly wanted to believe it was nothing. And then my water broke.

We arrived at the local hospital and I told a few doctors about my rash. Each physician dismissed my concern. Finally, an astute nurse (probably an experienced mother) said that my rash looked like chickenpox. My mind went into overdrive, racing with anxious thoughts. How could this be? I was in labor, and I was twenty-four years old. Didn’t I already have all the childhood diseases?

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My Friend Leslie

Yesterday, our community and I lost a brave, brilliant, adventurous, philanthropic, kind-hearted, outdoorsy, warm, beautiful inside and outside friend.

Leslie was one of those people who soared above the rest. May her memory be a blessing and may she rest in peace.

Back to my scheduled blog next week – this week is for reflection and thoughts of Leslie and her family.

Hoarders of Memories

In 2017, I started packing and cleaning it was almost one year before we planned to move. We were ready to say goodbye to the house with the lovely trees and not-so-lovely Fall leaves on the grass. Our endless seasonal battle. Goodbye to a house that was too big for two adults and 2 dogs. Time to downsize or better phrased “Rightsize.” This is a story of keeping our beloved things or the tale: Hoarders of Memories.

Where is this Stuff Coming From?

Twelve months after I started slowly, leisurely packing, you would never know the effort because there was still so much stuff. I secretly wondered if cosmic energy was quickly replenishing my treasures each night. Our friends would sneer and say you and Mitch just can’t throw anything out, and you genuinely have “that much stuff!”

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Courage: Aunt Carol’s Story

I received the news that Aunt Carol died peacefully early Saturday morning. The date was January 22, 2022; she was 94. Her story of courage and triumph throughout her life will inspire you; she inspired me. Although Aunt Carol said we cannot choose the path our lives take, I believe she did choose her way. She chose strength and hope rather than the road of despair brought on by the tragedy of losing her young daughter Debbie-Jo in 1959 and her eldest daughter Kathy in 2021 (z”l).

NEXT STORE NEIGHBORS

I grew up living next door (I used to think the words were next store) to my dad’s sister, Aunt Carol, Uncle Milt, and cousins Kathy, Lisa and Lori. The subURBAN myth in my young mind was that our grandparents didn’t want to drive all over Long Island to visit each week. Two houses went up for sale and, my family and my aunt’s family grabbed the deal. My childhood memory also recalls that grandpa gave a sizeable down payment on both houses in Westbury, NY; he always liked to get his way!

Paths our Lives Take
Grandpa Leo (z”l) (Aunt Carol’s and my Dad’s, Dad), Vickie (left), Cousins Lisa (center), and Lori
Paths our Lives Take
Cousins Kathy, Lori and Lisa with me (second to the left)

A lifetime of memories with my aunt flood my mind, from traveling to Florida with them as a kid (when I liked the bumpy plane rides) to sharing holiday tables and the joy of family. One such piece of advice from the early 1970s was “Don’t sit in the sun because it will give you wrinkles!” Excellent advice that I ignored and later found that life and the sun gave me wrinkles. I also think she told me not to smoke because it will stunt my growth – it was an easier time back then. If only smoking caused a case of shortness.

Below is an inspiring passage demonstrating courage after loss, that Aunt Carol wrote many years ago.  

Aunt Carol’s Story – In Her Words.

We cannot choose the path that our lives take. We can only learn to deal with the adversities and to enjoy the pleasure that life does bring. Debbie-Jo Sirota was born on March 2, 1955. She was a very peaceful child. She was born 3 weeks early and surprised everyone. As an infant, she loved to sleep, and I felt guilty waking her up for her feedings. She loved to eat as all my girls did. She loved her older sister Kathie and always followed her around.

On September 18, 1959, we suffered the accidental loss of Debbie-Jo: she was run over by an ice cream truck. Kathie was with her when this happened and witnessed the accident firsthand. If we chose to dwell on this horrible tragedy, we would have sacrificed Kathie’s life as well. I tried to believe that G-d had a master plan and that if I had faith and courage, we would all pull through this ordeal and be able to function as a family as normally as possible.

Ten months later, we experienced a miracle when I gave birth to twin daughters, Lori and Lisa. They were 6 weeks premature and very sick. I believe Debbie-Jo helped pull them through their difficult health issues and helped shape them into the outstanding human beings that they are. 

You never forget a loved one that is gone: you find a new place for her. I cannot imagine a life without my children and grandchildren. It is humbling to think that 5 out of my 7 grandchildren would not have been born had this tragedy not happened. I can say that I try to enjoy every day, be thankful for what I have, and not dwell on what I no longer have. “ (Five great-grandchildren were born after this was written)

Transformation

Aunt Carol struggled with increasing illness over the final years. But her final gift to her family was her last week of life. Her daughter, Lisa, a physician whom I have spoken of in previous blogs didn’t leave her side. Other close family members were also at Carol’s bedside. Lisa is the rock for the entire family and demonstrated her compassionate, empathetic skilled medical talent with both her parents. Lisa documented the transformation of her mother’s last week of life. The change in Aunt Carol’s skin, her peaceful face, and the acceptance of love and care. I was able to see this transformation through photos without Lisa saying a word. Aunt Carol let family members and her devoted assistant Barbara know, that she was OK. It was her time.

May Your Memory be a Blessing

We celebrated Aunt Carol’s life on Wednesday, thanks to the genius of Zoom, I was able to attend. The eulogies and outpour of love were extraordinary. Grandchildren sharing the unique relationship they had – each felt special and truly beloved by their grandmother. Aunt Carol and my Uncle Milt (both of beloved memory), and married almost 70 years, cherished family above all else. This is a lesson that I have taken to heart.

Paths our Lives Take
Glamour Shot of Aunt Carol and Uncle Milt

Especially touching for me was the eulogy given by Carol’s baby brother – my 91-year-old father.

Paths our Lives Take
Aunt Carol and Her Baby Brother Monroe and Me and My Baby Brother, Keith

Courage

Aunt Carol had the courage to continue life. She taught health and physical education for 35 years and continued to live a healthy, active life into her 90s. She was my substitute gym teacher at Salisbury Elementary School.  I remember one day in the gym working on the rings that were attached to large ropes.  I was the only one who was able to do a flip and my classmates insisted it was because my aunt was the teacher and not my incredible skill! Really!

Mourners from all across the country spoke of Carol’s impact on their lives and the community.   Carol and her husband Milt devoted their time and resources to JAFCO. and other meaningful charities. Carol’s  grandson Jeff wrote, “Thousands and thousands of lives were improved (if not saved) because of *their work with JAFCO.”   They received the  Lifetime Achievement Award for their contributions. Aunt Carol and Uncle Milt chose a path of philanthropy, community engagement, leadership, and family. They choose life – We can all learn a lot from their story.

 I will never forget you, Aunt Carol; I just found a new place for you in my heart.  

________________________________________________________________

You can purchase my book Raising Jess A Story of Hope on this site or through Amazon and other retail outlets.

Nursing Jess & A Heart-to-Heart-

I read a memoir called Raising a Rare Girl and, the author, Heather Lanier spoke about the difficulty she experienced nursing her infant daughter. The author later discovered her daughter, like our daughter,  had a rare chromosome deletion.  Memories of my experience nursing Jessica rushed back in waves. I understood what it was like to nurse an infant with disabilities,  the frustration of needing-wanting to naturally nourish my firstborn child, and the inability to do so without intervention. What was I doing wrong?  Why wasn’t it working?

When Jessica was born, we didn’t know that she had a diagnosis.  She was our teeny first baby. She came home from the hospital weighing less than five pounds, yet she was born near her due date. We called her peanut at the time.

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A Year Later- Covid, Covid Everywhere- A POSITIVE Story

It’s A Year Later, and Covid is still rampant in our family. And I feel like a Covid-Magnet. This is the fourth time I have had direct exposure in 6 weeks. Is it me? Covid, Covid Everywhere, A Positive Story!

Two family members were infected for the second time. The younger one recovered from a mild case about 3-months ago, and his current Covid infection is different and more challenging.

The irony is on a lot of our friend’s lips. The family who supposedly did everything to stay safe is now working on the second round of Covid cases.

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From Autism to Rare Disease: One Family’s Journey to an Unexpected Diagnosis

By: Jo Ashline

(I hope Jo’s important story about her son’s diagnosis from Autism to a Rare Disease will enlighten you as it did me. -Vickie)

He had just turned two when he was diagnosed with Autism.

It was 2004, and Autism was rarely discussed in the pediatrician’s office. Still, Andrew’s missed milestones had begun piling up. His doctor was no longer able to ignore what was right in front of him: A child unable to speak or play with his toys or point to airplanes in the sky. A child who had lost what few vowels and consonants he had managed to string together before his first birthday.

Continue reading “From Autism to Rare Disease: One Family’s Journey to an Unexpected Diagnosis”

RV Arrogance-Part 2- (Wo)Man Makes Travel Plans…

When Mitch and I met, we talked about traveling across the country. This trip was conceived over 42 years ago. It’s not like we discussed it each week for 42 years, tweaking our plans to perfection while charting our journey. But it was in the back of our minds….one day we will…

Man Makes Plans….

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RV Arrogance


I’m not sure if this is an actual term, but there is a definite level of RV Arrogance in our KanVan RV.  It appears that Mitch is the Captain, and I am the ..Er….Hmmm… passenger of the Captain.

As I am writing this, we have traveled from Buffalo to Asheville, Alpharetta, and Alabama to Mississippi to Louisiana to Texas, and I think I have clocked 4-5 hours behind the wheel. Not even enough to get a KanVan license if there were one to achieve.

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In My Shoes

I hate to fly. It scares me. The last time I was on a plane was 632 days ago. Flying during Covid adds to the stress. It’s possible that I love the RV because I don’t need to get on a plane. But sometimes you must down the alcohol (which you can’t do on Southwest anymore – so I need to pregame!) and enter the aircraft right foot first. I was headed to the In My Shoes event!

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Meet KanVan -Rolling with the Rubin’s

The day we received our truck camper, I wrote a blog called Camper Envy and Size Matters.  We were owners for less than one day, and already I was lusting for the RV -TV, bathroom, and shower.

https://www.rvtravel.com/campingmemes940/
NOT THIS!!!!!

The truck camper introduced us to this way of life for less than one year, four exciting trips. We (more me) knew we needed to move on if we ( more I ) would travel long distances. We loved our little Northstar truck camper and became extremely Covid-Creative (hmm, should I add that word to the Urban Dictionary? Is it already there?) But Mitch and I decided to say goodbye to the camper and hello to indoor plumbing! Meet KanVan our new RV Winnebago EKKO.

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Our  Most Bizarre Car Story

It’s coming up on our 42nd anniversary! Do you remember last year? We have gone through many cars, but one car stands out as the Most Bizarre Car Story.

Mitch and I  met at the University of Miami (the Florida one).  I was in the lobby of our dorm with my roommate Tami, when a friend I knew from Long Island introduced me to a  long-haired dude named Mitch from Buffalo.  Tami and I said a quick “Hi” and fled to the elevator.

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Can I Interest You in Some WATER?

Drinking enough WATER has become a full-time job. Who knew how hard it would be to keep up with the recommended daily intake?

As per Mayo Clinic and other sources, the recommended amounts are:

· About 15.5 cups (3.7 liters) of fluids a day for men

· About 11.5 cups (2.7 liters) of fluids a day for women

When I read the statistics above, I decided to buy a giant jug on amazon – little did I know, it was a men’s jug – not that they advertised it as such, but the container was 128 oz. 

Continue reading “Can I Interest You in Some WATER?”