Driving Miss Jess

BEEP BEEP BEEP is the sound I hear when the wheelchair van is in reverse. In the center of the cab are many giggles. Our daughter, Jess, is waiting for an adventure, and her Mom (me) is driving her group home van! This is our initial outing with me at the wheel, and I feel like a new driver taking my parent’s car for the first time.

Jessica was born in 1982 with a rare chromosome deletion.  She needs total assistance with all daily living skills. From when she gets up until bedtime, Jess has caretakers to assist with every need. Jessica’s beautiful smile, robust enthusiasm, loving hugs, and sense of humor are some of her endearing qualities. Jess is the bright star in a dull room, the quiet giggle in the silence; she is the gentle hug when most needed.

So, back to Driving Miss Jess – It’s not my first time driving a wheelchair van; that experience happened many years ago when Jess was much younger and living at home. Now she is 40 and lives two miles from our house as independently as she can.

I often think back to when we decided to get our first wheelchair van. The decision to cross over to an accessible vehicle was monumental. This was our future; no more pretending that circumstances would change. We needed help in the form of a 3-ton truck with many modifications.

 When I was in college, my parents gave me a Datsun 280Z sports car. I kept the car until we had our son Alex and needed a back seat. Before that, Jess and I tooled around town in my hot rod. When we were first married, and before kids,  I made clear to my husband Mitch that I never wanted to drive a station wagon or similar suburban vehicle, which would have included minivans, but they weren’t invented yet. 

My First Cool Car and Mitch’s Ride in 1977

Obviously, my priorities needed some tweaking. I guess karma’s a bitch because not only did we end up with a few minivans, we eventually ended up with a wheelchair minivan.

This demonstrates how life and family change your priorities because I was thrilled and grateful that we were able to purchase this vehicle.

Our first wheelchair van was a beige Plymouth Voyager. It was sent to a specialist to “Pimp my Ride” (for those who remember the MTV show). The company removed the middle row of seats and added supports, harnesses, a side-door wheelchair ramp, and other adaptations that are beyond my scope of automobile expertise.

Driving Miss Jess
IT DID NOT LOOK LIKE THIS!

We were genuinely excited to get our new ride. Ah—the ease of getting Jess around town, the fun it would be to arrive quickly and perhaps not be late for everything.

Driving Miss Jess
Jessica’s First Ride was the coop in the background – We couldn’t all fit!

Learning Curve!

One story highlighting our transportation learning curve was an outing with our friend, Sheryl. Let me preface this story with a statement that our family loves ice cream. Many of our celebrations and everyday routines include this delectable frozen treat.

The day we received the van, our youngest daughter Carly, Jess, and I invited our friend Sheryl to the local ice cream stand in our new modified van. Sheryl got in the front seat as I attached Jess to all the harnesses, clamps, and hooks.

Time was ticking, and I was sweating profusely, trying to secure Jess to the van. Meanwhile, Sheryl was joking that if she knew it would take so long, she would have brought an overnight bag. She continued, “Perhaps I should call my boss to tell her I will be late for work tomorrow morning.”

Sheryl’s monologue only worsened my fumbling because I was laughing so hard I couldn’t do anything right. Thirty minutes passed before Jessica’s wheelchair was secured to the van. We finally got ice cream, and it got easier.

Most experiences that start as insurmountable eventually become doable; unfortunately, that is often another lesson learned in hindsight.

And now here I am again, Driving Miss Jess.

So How Is Mom driving an official Group Home Van?

It took a long time. First, I became a volunteer for the agency. This included a lot of paperwork, fingerprinting, online classes, and tests I needed to pass. Next, I received a road test to confirm that I was a competent driver. Finally, I relearned how to attach the straps, belts, and other safety paraphernalia.

And now we are on our first trip. Mitch and I are taking Jess out to dinner, and I am the official driver. Pulling out to the main road was unnerving, although I have crossed this path thousands of times. But now I was an official chauffeur. 

Needless to say, we made the 3-mile trek to dinner and back. Our maiden voyage was a success. Jess and I have traveled several times since our first outing, and the independence and freedom for both of us are gratifying.

Driving Miss Jess
YES I LOOK A BIT FRAZZLED

I still have trouble with the damn straps, but we are getting there.

If this blog resonated with you, my award-winning Memoir about Raising Jess could be your next book or gift for your favorite Booklover. Some of this blog was taken from our story of Raising Jess A Story of Hope.

DRIVING MISS JESS
CHECK OUT DECEMBER EVENTS!

The Inside Scoop about RV Life.

This blog is my opinion only. I know my husband Mitch, navigator, driver of most miles, and cleaner of everything disgusting- including ALL BUGS and a trip planner may not agree with my reflections. But in true Vickie’s Views, here is the Inside Scoop about RV Life!

DOG YEARS

First off, RV miles are like dog years. “How many miles left?” I ask Mitch, my driver. “Only 80 miles left,” he repeats for the nth time. I reply, “Is that 80 miles in SUV time or 80 miles in RV time?”

It just takes longer; the RV is bigger than a car, it carries a lot of weight and is taller than the average vehicle. Another factor is that Mitch is obsessed with gas mileage. This is a touchy topic for non-RVers because getting 15 miles to the gallon is considered a win in our rig! An environmentalist may disagree, but that is for another blog. Mitch insists on driving EXACTLY 64 miles per hour regardless that the highway is allowing 75 or 80 MPH. “64 is the optimal speed for gas conservation. ” Can everyone repeat that mantra again and again?

Hence, sometimes our mileage feels like dog years instead of real-time.

PARKING

The Inside Story about RV Life
Am I Sorry? Hmmm?

In the RV world, there are a lot of memes that talk about divorcing over parking your RV on a flat surface. If the RV is tilted at all, one might roll off the bed or feel off-centered. We did not call our lawyers, but there were plenty of arguments about my directional skills.  Similar to a plane landing and pulling into the gate, I was outside sans flags trying to navigate Mitch into the parking area.  After we park, we take the level to see if the RV is on flat ground. And then we repark and readjust and repark.  All the while, I hear comments that I am not talking loud enough (WEAR YOUR HEARING AIDES!) I am telling him the wrong direction (THIS IS PROBABLY TRUE) and other conversations that I won’t bore you with.

Inside Scoop  about RV Life
Yep, it’s a Skill

OH THOSE DUMPs

Have you thought about how one gets running water or where the contents of the toilet go? Yeah, I thought not. When you get to a site, you may be able to hook up to water. This means you attach your hose to the campsite’s nozzle, and your RV has endless water for washing dishes, showering, and sink use. Only use city water because Well water can cause all kinds of trouble. But where does all that water go, you ask?

Well, you see, the campsite provides a drain hole. We take our hose and drain our grey water tanks. Grey water is sink/shower water, and black water is, well, you can guess where that hose goes. Anyway, for those who read my blogs, you may have thought I am a bit of a germaphobe, so doing Dumping is not high on my list of preferred activities.

Garbed in a mask and full gloves. Yes, Mitch rolls his eyes! But I don’t want any splatters on my face since I am in charge of opening the lid to the drain hole and inserting our hose. I am keenly aware that the person before us may have drained their black water tank into that opening, and the thought is enough for me to put on a full hazmat suit. But that would probably be grounds for divorce. So mask and gloves it is.

We have a cassette toilet, which many RVers don’t like; however, we prefer emptying a cassette to dealing with the dreaded black hose. It’s a preference, no judgments here. On a positive note, having a bathroom in your vehicle makes for fewer stops along the road. And to quote Mitch, “It’s a luxury!” And I agree it’s better than the Bucket we used in the old days of 2020.

The Inside Story about RV Life
OK, This Has Not Happened YET!

After our RV has finished eliminating all its waste, Mitch and I go through our (my) Lysol routine. Spray hose, spray gloves, spray the bottom of shoes, spray inside of hoses –

Finally, we are back in the RV, sanitizing our hands, and I am trying to forget about the possibility of all the YUCK and moving on.

I think of RV traveling as if I were on a cruise. Well, kind of. We go from port to port without packing and unpacking our clothes. Our bed and linens are our own, and my coffeemaker and food are there for the taking. Granted, there are no fancy dinners and late-night shows, but it still feels good to end the day in your own bed under the stars of a new and exciting location.

YOUR HOME IS ALSO YOUR CAR

Mitch likes to fish; I do not. One day, he wanted to fish the Snake River below Lake Jackson Dam. He fished for three hours, But here’s the thing, our RV home is also our transportation. So, it’s not like Mitch can take off and go fishing; we all had to go to the site. So he fished for trout, and I read, walked, ate, and did some complaining. 

BACK TO WATER

We lost our water use on week two of our 8-week trip. On the one hand, we only had to dump the nasty cassette toilet rather than all the hoses because we stopped using water. No water, no need to dump from the grey water tank. This also meant no showers in the RV. The alternative is campsite showers. Most of them were fine, and after a while, I was OK with using the public showers. I hear my beautiful mother from above again saying, “Is this my Vickie?”  This is not a comment on campsite showers; it is more about my transformation. 

We used bottled water for face washing, teeth brushing, dish cleaning, and other necessities. Does this negate the 64 miles an hour to conserve gas? Probably.

Flies

The Inside Story about RV Life
Always Prepared For Everything!

Flies, I joked with Mitch one day and wore my netting….He continued his routine (that I have mentioned before), Mitch swatting. His refrain, repetitively, was, “F@#$ Fly!” SWAT, “ Got the last fly,” repeat.

The above are random observations. Regardless of my musings, the truth of this adventure is that this was a trip of a lifetime.

Reflection

The Inside Story about RV Life
The Inside Scoop is That I Wouldn’t Choose Another Way to See the Country!

Our country is topographically diverse, from the beautiful valleys and the amber plains to the peaks of mountains, the arid deserts, and the incredible waterways. And we found that regardless of political affiliation, people just want to get along. If you ever have to chance to see our magnificent country, Take IT! You will be forever changed.

Raising Jess
Raising Jess A Story of Hope

Raising Jess Memoir 2022 Readers’ Favorite Gold Medal Winner !! 

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…

“A truly Enlightening Read” Kirkus Review

As a professional in the field of developmental disabilities for over 40 years, I learned things I didn’t know. I encourage others in the field to read Raising Jess a Story of Hope to help understand the families and individuals you work with.” (Amazon)

This book is a must-read for anyone looking to learn more about special needs families and their day-to-day challenges and triumphs or simply wants to immerse themselves in a compassionate and celebratory world.” (Amazon)

“Couldn’t Put it Down! Raising Jess is an amazing book! I started it at 9 pm and stayed up all night to finish it in one sitting. Vickie Rubin’s writing is masterful! Highly recommend!” – Mike S.

The Surprising Revelations about Home, Holidays, and the Buffalo Bills.


It was Rosh Hashana, and we were almost 2000 miles from home and family. Our location was Bozeman, Montana. I googled “Temple In Bozeman,” expecting google to laugh at me and say, “your kidding, right?”. To our surprise, there was a Temple. But that wasn’t the only Surprising Revelation!

Revelation One

Continue reading “The Surprising Revelations about Home, Holidays, and the Buffalo Bills.”

Cross-Country Trip Planned for 45 Years from VW Bus to EKKO-But What Happens?

This is the story….


45 years ago, Mitch bought a VW bus. He was thrilled to own it, and we planned to go on a semi-hippie cross-country trip during the summer of 1977. (Hey, Dad, if you are reading this, did I ever mention this plan to you and Mom? LOL) The VW bus had a shag carpet with no seats in the back. Leather fringe separated the front seating and the back sleeping. That’s about it for amenities.


Was I REALLY OK with this? Both of us attended the University of Miami (Florida), and we planned to take off on our adventure after the Spring semester.
Mitch picked me up from the airport in his VW bus the summer before our trip. I frequently flew the LaGuardia to Buffalo route during our summers at home. We drove partway to his house when I asked if I could drive the cute VW with the adorable stick shift and clutch.

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Covid Math Plus a Wedding

The wedding at our home is in 2 weeks. The family is coming into town. But who should arrive first? COVID! AGAIN! After numerous exposures, I was avoided like the Positive family members, think Pariah. Math played an important role in the days post-exposure to Covid. Inquiring minds want to know about Covid Math plus a Wedding.

Covid Math

Covid math. Let’s see, on August 9th, I was exposed, so this is day one of a five-day period where I could become Covid positive. Start the clock! On August 11th, I spent the day with family only to find an unnamed husband-person was positive. Exposure number two, and now my five days start again. On August 12th, I picked up my grandson from camp and played outdoor football. The next day he is positive, and my Covid Math starts again. 

But wait, there is more – On August 13th, I drive my in-laws to the airport after spending the previous day and evening with them at my home, only to find out that one of them is positive. Is this really happening? Do I need to redo the Math again? What day is this? Where is my calculator?

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Family Vacation: Can you say Wallenpaupack?

Last January, my husband Mitch sent out Airbnb options to our family for the summer Family Vacation. Six adults and three children under six together for one week in July. Talk about too many cooks in the kitchen! Every house Mitch suggested was greeted with six differing opinions. Out of frustration, we picked a house on Lake Wallenpaupack for our Family Vacation that at least one of us (Mitch)  agreed to and moved on.  

Wallenpaupack

By the way, it took me months to remember the name of where we were going….and then more time to pronounce it – It helped that an old episode of The Office ” BOOZE CRUISE” was located at Lake Wallenpaupack  – here is the pronunciation as demonstrated.

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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

Continue reading “The Most Peculiar Thing We Received and Do”

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. 

Continue reading “What is so Super about Daniel, Our TLC (Tender Loving Canine)?”

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
Continue reading “The Room Where it Happened”

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.

BACK TO SCHOOL

Attention Special Educators, Therapists, and  Professionals working with families. Back To School with a new Perspective! 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…

As a professional in the field of developmental disabilities for over 40 years, I learned things I didn’t know. I encourage others in the field to read Raising Jess a Story of Hope to help understand the families and individuals you work with.” (Amazon)

This book is a must-read for anyone looking to learn more about special needs families and their day-to-day challenges and triumphs or simply wants to immerse themselves in a compassionate and celebratory world.” (Amazon)

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? 

Continue reading “RV Life from an “Occasionally”  Happy Camper”

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.

Continue reading “You Forgot What? Gus the Dog’s Tail (Tale)”

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?

Continue reading “Did Motherhood Really All Start with Chickenpox?”

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.

Continue reading “Nursing Jess & A Heart-to-Heart-“

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.

Continue reading “A Year Later- Covid, Covid Everywhere- A POSITIVE Story”

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”