I reconnected with a friend from my old block in Westbury, NY. Randy,her brother Michael, and I played with all the neighborhood kids almost every day. Those were the good old Westbury, Long Island days—the 1960s and 1970s. The “kids on the block” felt like cousins and family. In fact, my actual first cousins grew up next door to us. My husband Mitch always refers to Plum Tree Road West as my personal Tara (a.k.a. Gone with the Wind).
On the weekends, the kids were let out in the morning along with dogs ( no need for a leash or poop bags needed back then). The gang of humans, not canines, played kickball on the court. We also played Ringalevio on the lawns. (Tag game originated in the streets of New York City)
Randy’s mom, Millie, was a dancer for the Tommy Dorsey Band before she had children. Occasionally, Millie invited the neighborhood kids to their home. We were instructed to form a straight chorus line in Randy’s den. Millie tried teaching our two left feet the Cha Cha. She had patience, and I guess so did we. I wish I still remembered the steps. But I DO remember Randy and Michael’s wonderful parents!
Can You Find Me?
Time moves forward, and we pursue new paths in our lives. Sometimes we lose contact with those who helped build our foundation.
CAN YOU FIND ME?CAN YOU FIND ME?
Reconnecting
Last week, Randy called me out of the blue. We chatted and reminisced, and it felt like it was yesterday when we last saw each other. Her memory astounded me as she knew my kids’ names and details! Yowzaa!
Thank You, Utah!
During our chat, Randy mentioned that a mutual childhood friend,a teacher in Utah, was asked to read my memoir, Raising Jess: A Story of Hope. This was to gain a broader understanding of the parent perspective.
Randy was intrigued and said she wanted to read my book. I sent her my copy with a loving dedication about reconnecting and friendship.
42 – that’s the number of bridges connecting the Florida keys to each other like a charm bracelet. The shortest Harris Gap Bridge is 37 feet, while the seven-mile bridge is the longest. Once you leave the mainland using the Jewfish Creek Bridge, another name for the Goliath Grouper …. you enter a new world.
Bridge One
The minute we cross the first bridge, my husband becomes Caribbean Mitch. It’s like a switch has been flipped, and he’s instantly in his element. There’s not even a transition pause – it just happens suddenly – He is here!
It’s Going to Take More for Me.
I am still the same suburban Vickie. No matter how many bridges we cross – it takes me much longer to calm down and get into the flow of Key’s Life. A life that’s more laid-back and less concerned with time and schedules.
Bridging the Gap
I wish I could bridge the gap between my overthinking, scheduled existence, and the life of Key Slug. I worry about the sun destroying my weathered skin while Mitch embraces the beautiful rays. I think about all the food we are consuming while Mitch orders another key lime pie. I ruminate about life while Mitch sets up his fishing equipment.
I am not a boater—there, I said it. On the other hand, my husband Mitch loves fishing on his rented boat. I have a 2-3 hour ADD attention span for the high seas while he is just getting started. But our last boating experience was the first one for me!
About 7 Nautical Miles Away– I had two bars here
We were somewhere off the Florida Keys—as you can see above, my map knew precisely where we were. I had already texted, read, ate, and drank and was ready to move on. Did I mention that Mitch anchors the boat and fishes? When I refer to boating with Mitch, we are not going for rides—we are anchored while he teases the unsuspecting (by this time, they should be suspecting) fish.
“I hope you don’t mind me asking, but how are all the proposed Medicaid cuts going to affect your daughter Jessica?” Many friends and family members have posed this question. I don’t mind if anybody asks, but I wish I had an answer.
That’s Scary, Mom – If you don’t know
Don’t Know
Jessica and her housemates, as well as 130,000 others with developmental disabilities in NYS, rely on Medicaid. This is not income-based; it is based on their diagnosis. One problem among a long list is my reply, “I don’t know.”
Medicaid cuts COULD affect Jess and her peers, but we just don’t know yet. The details are hazy, and the potential consequences are unsettling.The specifics are not specific…
I diagnosed myself with blogger’s block. It’s kind of like writer’s block, but since I am a blogger—well, you get it. Although it’s a made-up diagnosis, the block feels genuine.
For those of you who create, you know that feeling in your gut when you need to express yourself through your craft? It burns, kind of like reflux, but not—the medication needed is not Tums. It’s creating something.
How Many Views- Did I Win or Lose
Some of my best blogs were written in 20 minutes. Likewise or unlikewise (is that a word?), some of my worst blogs were written in two weeks.
How do I determine a good blog? I use the very unscientific and unhealthy criteria—the equivalent of Facebook post likes—I see how many views I get! I love it when WordPress taps me on the shoulder and says, “Vickie, your numbers are soaring today!”
“You didn’t mind when I tapped your shoulder., with my slobber”
There are times when I’m convinced I’ve written a fantastic blog, only to find that it’s not getting the views I expected. Is it the title? The keywords? The meta description? Maybe all of the above. It’s enough to make me question my sanity. But I’m sure I’m not the only one who feels this way. Hmmm. Ok, I hope I am not the only one who feels this way.
How Much Do You Earn?
I don’t know what a good view count is, and I am afraid to ask my fellow bloggers. I fear that what I think is a good number of views is really an exaggeration of my ego. And is it like asking people, “Hey, how much money do you earn?”
Wiser folks than I have suggested, I continue writing because I love it. I am connecting with a group of people who identify with my prose. So, why do those numbers keep needling me?
Blogger’s Block- Write ~Delete ~Repeat
So, what is a blogger’s block? For me, it is sitting down to write a blog, and then I only hear crickets….. write, delete, repeat.
On the other hand, my dad has writer ZEAL. He has created his second blog in a week! His next blog will focus on Tradition – think Fiddler on the Roof. Click here for Dad’s first blog.
Writing Began With Jess
But back to me…. I have a lot of thoughts and ideas, but they are not translating into text. Is that how our daughter Jessica feels? She has a rare chromosome deletion and is non-verbal. She has so many thoughts and feelings yet cannot communicate them with the spoken word. My writing journey started because of Jessica – I felt the power of the prose – the love of each word describing our life with Jess in my book , Raising Jess. Later, I started blogging and expanded to COVID (so much on COVID!!!), RV travel and family. The husband would like to remain anonymous, yet I keep writing about him. Sorry, Mitch (he does get final approval on blogs, so it’s not a blindside).
Time Will Tell
Anyway, this blog is the most I felt like writing and the fastest I have written in a while. Am I back? Time will tell…. Maybe I broke through the block by admitting my name is Vickie Rubin, and I have Blogger’s Block. Suggestions welcomed!
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My Dad, Monroe, was born in 1930. Today, at age 94, he is sharing his first blog. Well, technically, he didn’t call it a blog—he just sent our family an email. But as I read it, I knew it was meant to be shared. When I suggested turning it into a blog, Dad agreed to share his story with the universe.
So, without further ado, here is “Spectacles to Screens,” – a guest blog from my dad.
Dad’s Guest Blog
Lately, as we humans do, I have been reflecting on life – looking back and forward. Honestly, looking ahead isn’t as appealing these days, so reminiscing about the past feels more natural.
How do we get from A to B?
My eyesight is not improving, and the new glasses I bought a few months ago aren’t as clear as they were. New eye problems continue to pop up, which made me think about a story.
You Need Glasses
I was in junior college, which my father thought was perfect—” free and only two years.” He needed me in the business.
One day, while taking a typing course, the instructor noticed I was making a lot of errors. He said, “Your mistakes are not from typing.” He said, “They are reading errors.”
I went to the eye doctor, who confirmed the teacher’s diagnosis, and just like that, I bought my first pair of glasses. By the way, I received an A in typing.
Fast forward a few years, and I find myself stationed in Korea. I was assigned to the motor pool when the captain asked if anybody knew how to type. Now, in the army, rule number one is never to volunteer for anything! But against my better judgment, I raised my hand and said I could type (Dad didn’t mention his A).
This decision led me to the role of head mailman for the Battalion, and I reached the rank of SergeantFirst Class. After 18 months, I was sent home, and typing remained a constant throughout my career.
From Typewriter to Keyboard
I never thought, back in the day, that at age 94, I would be typing every day on my computer and phone. The fact that I needed glasses changed the course of my life.
I hope my new eye problems will bring new opportunities – we can wish, right?
Dad, Your Next Career Should Be as a Comedian!
Dad always has a knack for humor. He could have been a comedian with his witty one-liners. Here are a few of his classic, funny quotes that never fail to bring a smile to our faces:
😆 On Pregnancy
Our cousin who was due to give birth in three weeks talked about how hard it was to walk and that she is up all night with heartburn – Dad quickly responded that he must be pregnant , too!
😂 On Technology Overload
“I thought technology was supposed to make things simple. Last night when I went to sleep, I was charging my land phone, my hearing aids, my mobile phone, my help I fell down button, my Apple watch, and my Kindle.”
🤣 On Vacation & Illness:
Below is my dad’s funny response to what my doctor said why I may have contracted pneumonia.
DOC REPLY : I believe when you have a lot of stress in your life and then sort of let go of the stress like going on vacation. Your immune system drops and something comes and gets you.
DAD’s REPLY
“That’s the first time I’ve heard that vacation can cause pneumonia!
I’m on vacation all year—maybe that means if I go to work, I’ll get sick instead? Good thing I don’t have enough energy to punch in.”
Parenting a child with special needs is a profound journey that demands resilience and compassion. Amidst the daily challenges, parents must prioritize their own well-being. Self-care is not a luxury but a necessity, enabling you to maintain the strength and patience required for caregiving. This guide offers practical strategies to help you integrate self-care into your routine, ensuring you remain balanced and energized.
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Craft a Personalized Self-Care Plan
Start by identifying moments when you feel most drained and consider the positive and negative coping mechanisms you currently employ. This reflection can reveal areas where your self-care might be lacking. Once you have a clearer picture, incorporate activities that rejuvenate you on all levels. This might include setting boundaries, engaging in hobbies, or practicing mindfulness. Remember, your self-care plan should be adaptable, evolving with your life circumstances to continuously support your well-being.
“Hey, I went to the store today!❤️🥔🫛🫑🍅🛒😁” This text is most likely sent by a boomer. I notice that my friends and I pepper our texts with emojis, yet when I write to my millennial children, there is rarely a heart, big smile, eye roll, wink, or other cute expression of feeling. Just an observation – But – Is Emoji Generational?
I decided to review my most recent texts with my children and people over the curve. My five-year-old granddaughter’s definition of the curve.
Nana, I am young and at the beginning of the curve. And then some people are on the curve, and old people are going down the curve.” I hesitantly asked, “So, where am I on this curve?” Noa’s thoughtful and hesitant reply, “Hmm, you are on top of the curve.
Ok, I will take that as a win! So those on the curve and beyond, in my opinion, have a different texting style and emoji usage..
It’s a teeth-chattering -something degrees outside, and you know what that means? Time to grab my actual, no-joke, award-winning Vegetarian Chili Recipe. 🏆 (Yes, I have a real award—this isn’t one of those ‘Mom said it’s the best’ situations.)
“Hello, Jessica! It’s so nice to see you!” says the dental hygienist. Slowly, I roll Jessica into the small bay, where she will duke it out with the hygienist and me for the next hour. You are familiar with the size of the compact dental treatment room, which contains the chair, tools, and shelving. Add a wheelchair, Jessica’s aide, and me, and it’s seriously snug. I’m sure dental hygienist schools did not have a rule book for cleaning Jessica’s teeth. Yet, every 3 months, the hygienist creates a new page to her manual called “dodging the bite, head turns and arm flail while using sharp instruments.” It’s sure to be a best-seller!
READ ON BUFFALO NEWS IF YOU HAVE A SUBSCRIPTION
Jessica
Born with significant disabilities and a rare diagnosis, Jessica is not considered your typical patient. Fortunately, we are close to a dental office that caters to those who are, for lack of better words, not in any “how to” books.
JESSICA GOES TO THE HOSPITAL UNDER GENERAL ANESTHESIA FOR A FULL DENTAL CLEANING
My Love-Hate Relationship with the Weirdest Thing in Our House
Many years ago, my husband Mitch brought home an Amish contraption that I immediately schemed to throw out: a circular hanger with clothespins. My initial reaction was laughter, followed by annoyance that this was not a gag gift. Mitch was serious.
Fast-forward ten years, and this Clothespin Cardholder has earned its keep. If it does not win a beauty award, it does win a trophy for functionality and conversation starters.
I still struggle to find a place to hang this weird contraption. However, while in the playroom this year, an equally unattractive solution came to me.
Amish Clothes-Pin Card Holder
So there you go—this Household Hack is one of the weirdest things in our house but also one of the most useful. Happy New Year!
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The F-WORDs ? Why does your mind immediately go there? That’s not what I meant at all… What I meant was: F-hilosophies or beliefs I’m willing to stand for in the coming year…
FUN
Firstly, I stand by the concept of Fun. We need to keep fun in our hectic, harried, heated lives. I take this cue I’ve learned from my eldest daughter, Jessica. Despite her many challenges, she always finds a way to embrace fun and laughter. Her resilience and joy in life are truly inspiring. I’ve made a vow to follow her lead and keep fun and laughter in my life, just like Jess.
FAMILY
Secondly, and fundamentally, is Family. The notion of Family and friends that I choose as Family appears like a gimme. Yet, I want to have it in writing—I will always stand by my Family and friends this year and each year after. Regardless of their politics, most of us are on the same page. Regardless of the quirks—Ooops, that may be what they are saying about me—Regardless of the disagreements and SOOO many opinions , all of that just keeps it interesting.
Okay, let me explain Vicki(E) Squared. First, it’s VickIE (me) and VickI (Atkinson who is also a Ed. D, so she has even more letters, is one of the hosts). Vicki holds a doctorate in education and is a licensed professional counselor. Wynne is the Heart of the Matter ( HoTM ) co-host and an endurance sports enthusiast. Heart of the Matter shows how writing and storytelling can build resilience for the future by exploring what matters most in life: connection, laughter, empathy, and authenticity. And Guess who was their guest? VickIE with the ie at the end. I was invited to speak about Resilience, Community and Family Stories, and of course- Raising Jess!
Virtual Friends
I was trying to explain to a friend the other day, how it is possible to make friends who share a similar vision, energy, and perspective on the world yet never meet face-to-face.
The blogging world has done that for me. There are so many bloggers who share their lives with readers and somehow, you feel like you know them. They are your friends.
The emotional journey of receiving a diagnosis for your child.
The transformative power of community and friendship.
Heartwarming anecdotes and stories about families and their communities.
The challenges authors face in sharing their messages with the world.
Thank you, Vicki and Wynne for the beautiful introduction
So enough of me here is the podcast and the post from Wynne and VickI. ENJOY!
Vicki and Wynne HoTM
Spending time with acclaimed author Vickie Rubin is good for the soul.
Wynne Leon on the left and Dr. Vicki Atkinson on the right
Wynne and I had the pleasure recently of sitting down with Vickie to learn about her book, “Raising Jess – a Story of Hope” and came away with a renewed sense of purpose about the power of family, motherhood and more.
Vickie is an advocate at heart. An educator and a champion for families facing the challenges of a child with a rare genetic disorder, 1q43-44 microdeletion syndrome. Jessica’s story, as told by Vickie, is courageous and powerful. Written as though Vickie is sitting with you, over a cup of tea.
Vickie writes: “Raising our first child, Jessica, came with challenges we never saw coming. Born with significant disabilities and a rare diagnosis, her story became one of resilience, love, and unexpected joy. This book shares our journey—from learning to navigate her needs, deciding to grow our family, facing marriage struggles, and embracing the grandparent role—to raising Jessica inclusively in a community that rallied around her.”
Whether she’s receiving accolades from us, prestigious writing recognition or penning an essay for Newsweek magazine, Vickie’s focus is clear. Helping others through love and education. Compassion and information.
Wynne and I learned so much from Vickie and we believe you’ll be inspired by her humility, insight and love. Three things that author Vickie Rubin exudes.
Join us, won’t you? Vicki and Wynne 😊
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An essay about bones and scopes? EWWW—Don’t despair; no details are given other than a heartwarming story about our thankfulness to healthcare Superhero providers.
BONES
Accompanying Jess for a bone density test or Dexa Scan is daunting. This test measures if you have some calcium and other minerals in your bones. Are your bones looking strong (high number) or more like Swiss cheese (low number), or perhaps all the numbers in between? Low numbers increase the risks of fracture.
Have You Had This Test?
Raise your hand if you have had a bone density test. For those who have not, I will give you a short version. Lay on your back on a table, don’t move, keep your arms and legs in this position, and watch the scanning X-ray arm pass over your torso.
NOT SURE IF THIS IS A HAND RAISE OR A MIKE TYSON MOVE
Meet our tech, Kelly, at ECMC Medical Center. She is Jessica’s radiologist technician. She is also a unique individual with a heart as big as Jessica’s personality. Jessica’s house manager (also Kelly), myself, and I roll into the exam room. Tech-Kelly (I will refer to her as TK) helps us transition Jessica to the flat, hard scanning table and instructs us to stay behind the protective wall.
Sing Loud, Vickie
My job is to sing at the top of my lungs to keep Jess calm and distracted. Not sure how calming my voice is to the others in the room. Thus far, nobody, at all the doctor appointments I attend, has ever had the nerve to ask me to tell me, “STOP! You’re hurting my ears!”
TK settles Jess on the table under the X-ray equipment. We are ready to begin the scanning. “Wait,” I protest. What are you doing? You can’t stay there while the X-ray is shooting rays?” At first, TK smiles and ignores my worry.
Jess squirms and giggles as our angel tech gently helps her stay still.
Take 1
The pictures are blurry; we must do this again. Again, I protest, “Please don’t expose yourself.”
Take 2
This time, TK sings loudly with me. I am sure they did not learn singing in X-RAY school; this song is straight from the heart. Yes, there is a bit of guilt that I am not standing there. Throughout Jessica’s childhood, I stood by for every x-ray and, at one point, decided that I couldn’t continue doing that.
When the test was complete, I spoke to TK about her kindness and empathy. She said, “I have no children, and my mission is to help special patients like Jessica.” She was honored to be able to provide this compassionate service. I am honored and thankful to have met TK-Kelly.
Bone Density Result
Bone Density result – Osteoporosis – We are not surprised; many individuals who are wheelchair users have problems with bone density. Limited physical activity, immobility, and certain medications can contribute. We are working on new strategies to get Jess standing, if not moving. One potential option is a standing wheelchair (more on this at another time)
THIS WAS A DEMO – WE ARE GOING TO START WORKING ON GETTING THIS FOR JESS
COLONOSCOPY
Kelly, Jessica’s house manager, is a nurse, and we trust her opinion and guidance in making medical decisions. Jess experienced some rectal bleeding. TMI? Kelly suggested we visit the proctologist, who suggested a colonoscopy to rule out a serious problem.
OK, I will not go into the S@#%^ details because everyone knows about the prep. I will start at the hospital after the prep and before the procedure. You can thank me later.
Yes, it was an encore of my loud singing until I used my phone as a backup. Jessica’s favorite musician is Eminem. I started playing his music until the F#%^& word screeched loudly among all the drugged and gassy people in the Colonoscopy prep and post-procedure area. OOOPS! I immediately shut it off until a nurse said, “We enjoyed her music—don’t worry about the lyrics.”
So Eminem cleaned out his closet while Jess cleaned out her colon.
I am thankful that the staff allows Kelly and me to assist. Years ago, the medical professionals insisted that they knew EVERYTHING and didn’t take the opportunity to use Jessica’s experts. For more details, see Mh.D.
A Hoyer lift was used to assist Jessica in getting onto the bed.
This is Hoyer Lift used at another location
Choose Me
Kelly and I put on her gown and kept Jess calm while waiting for her procedure. Inserting the IV took a few tries but was successful. After the first try was unsuccessful, another nurse jumped in to assist. One little vein raised its hand to say, “Choose Me.” I watched the nurse slowly insert the needed into Jessica’s skin, the top layer, and then into the willing vein. GOTCHA!
The doctor removed two polyps, and Jessica is scheduled to return in three years. I was second-guessing whether Jess needed a colonoscopy; the risk and the prep were weighing on me. Kelly initiated this appointment, and it was the right step to take. Thank you, Kelly, for your wisdom.
Village
As I’ve said many times, it truly takes a village. Some villagers, like Kelly, are there daily to support our Jess. Others, like the X-ray and hospital staff, are just passing through Jessica Town. We witness the best of humanity, the superheroes, and the reasons people choose their professions. Mitch and I are forever thankful for our village.
Thankful to You
I am thankful for all my readers—those who have supported and encouraged me on this post-retirement gig, shared thoughtful comments, sent kind messages, and taken the time to read my stories. You are my village, and I am thankful for each of you. Wishing you a joyful and meaningful Thanksgiving!
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Raising our first child, Jessica, came with challenges we never saw coming. Born with significant disabilities and a rare diagnosis, her story became one of resilience, love, and unexpected joy. This book shares our journey—from learning to navigate her needs, deciding to grow our family, facing marriage struggles, and embracing the grandparent role—to raising Jessica inclusively in a community that rallied around her.
It’s a raw, hopeful story about breaking through barriers with the support of family, friends, and neighbors. Whether you’re facing your own challenges or looking for inspiration, “Raising Jess”will show you that thriving is possible, no matter what life throws your way.
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You see Jay, a guy you knew from SAT classes in Westbury, Long Island. He and your future husband walk into the elevator in Pearson Hall dorm, University of Miami. Jay turns around and introduces you to Mitch. Jay’s friend Mitch doesn’t look like the other guys you have dated. He appears more wild and less polished than your friends.
Oh Yeah, This Guy also went to U of M in 1979 (Jim Kelly)
Do You Know the Time?
Coincidentally? Ironically? Cosmically? You see Mitch at a party the next night and ask him if he knows the time. (Little do either of you know that your future first business is Watch World – all about telling time) Mitch and you start talking, and now you feel more impressed with this long-haired, unpolished hippy dude with a car!
My Grandson visiting Watch World, which is still in business 45 years later!
During your first year of undergrad, you and Mitch hang out most days with Jay and a large group of friends.
Tomorrow is Election Day 2024! Just stumbled across my 2020 blog post, and wow—still so relevant. Same message, same spirit. Let’s make tomorrow count! 😊
Tomorrow is Election Day – Although it feels like election day started weeks ago with early voting. I have never been so politically involved or motivated to Vote!
Your Vote Counts!
My first voting experience was on November 2, 1976. My boyfriend, and now my husband, Mitch, encouraged all my apolitical girlfriends and me to register and vote. We were students at the University of Miami (the sunny one, not the Ohio School). My priorities at the time were fun, food, festivities, and friends.
Mitch and I went to New York City to see three Broadway shows in three days. (That’s what you do when you are no longer a New Yawkah)
The thrill of Broadway is in my soul. I love the music, the lights, the excitement, the talent but maybe not the seating. Talk about personal space, the seats are so close and the breathing from random strangers is continuous. I know, that’s a human thing but all those germs being blown in one’s direction.
Out of the three shows , Mitch and I enjoyed SUFFS the most. From beginning to end, it was smart, funny, heartbreaking, and educational. The story lines of the historical women activists was fascinating. I was compelled to to look up all the women hero’s. And I can’t stop listening to the music. The message is so important right here, right now! GO VOTE! Also, my cousin’s daughter went to camp with the brilliant Shaina Taub! _ am I cool by association?
We enjoyed Hell’s Kitchen. Our seats were so close, I felt the energy radiating from the stage. The music was lively and the standout performances are the reason to go to Broadway and this show!
OK, I admit – I didn’t understand the big deal about Stereophonic. It won best play so I know it’s me. It just was too slow, a lot of staring and silence between the actors. The music was great but this was a play so not enough music for me.
(Article written in 2008) This article was posted in the Buffalo News in 2008 – I am re-posting it today because Former President Donald Trump called Vice President Kamala Harris “retarded” while attempting to convince top Republican donors to pour more money into his campaign, The New York Times reported Saturday.
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In most homes a common family rule is not to use curse or use swear words.
In our home, the use of a curse word directed at somebody was forbidden, but if you were describing a frustrating situation or a frustrating day – certainly a substitution of the “bleep” word for I got a “darn” speeding ticket, was acceptable. But the R-Word is a whole different story.
She is due on my birthday, October 1, 2019. But as usual, my granddaughter Noa has her own plans and arrives early on September 26. For the last few years, I have been out of town on our birthdays. But this year, I am in town, and my daughter Carly, granddaughter Noa, and I decided to celebrate in style—let me clarify—Noa style.
Our first stop was a nail salon for a Mani-Pedi. Noa selected our colors—and I mean the plural. Noa insists that each nail sports a different hue. She also chose our toenail shades—one color for ten toes—Phew! Our final stop was a chichi (very fancy for my 5-year-old readers) restaurant.
Directions from a 5-year-old Diva
“Nana, for my birthday dinner, will you please brush your hair and use the cream I use on my hair?” I told Noa that no matter how much I brush my hair, it will not fall in long, beautiful, silky curls like hers. My natural frizz will have to suffice. And I need to remind her that it is our birthday dinner.
(“Stop the presses! My article made the Buffalo News, My View column! 🌟 If you’re reading this twice… 🎉 Sorry for the déjà vu!”)
My training for a Doctorate in Motherhood (Mh.D) began in 1982 when I delivered our first child, Jessica. Our daughter was born with a rare chromosome deletion and a Ph.D.-level syllabus of challenges. Before long, in 1984, we added our son Alex to my training, and finally, in 1987, our daughter Carly was born. I was running a full-time crash course in chaos management and sleepless nights—graduating with honors in trying to hold it together.
Undergrad Graduation @UniversityofMiami
Training
Raising three children is the most fundamental, frustrating, fulfilling, humbling, selfless, and loving job I will experience. Training started the day I gave birth. Of course, there are books, well-meaning advice, nosy neighbors, and intrusive family members; however, none matters when you are alone for the first time with a squirming alien who needs EVERYTHING!
As an infant, Jessica received a diagnosis of a severe developmental disability and complex medical difficulties, including a seizure condition. Physicians train for a decade to provide the expertise to care for children like our daughter. Yet here we were trying to figure out how to help Jess become the best she could be, keep her safe, and, for lack of less harsh words, stay alive.
Can you say Cattaraugus (Cat-A-Rah-Gus) County? If you’re from Western New York, it will roll off your tongue as quickly as repeating Erie (Ear-Ree). Cattaraugus, or Catt (as we locals say), is the setting for our 13th, 10th, or 11th (We couldn’t figure out which year) Family Reunion.
I made Shutterfly books after each event, and my first book was written in 2011. But we skipped some years. The important element is that we are together.
this was our first check out Jess in the Hill Billy GolfcartFive Dogs and No Dog Fights –
It’s noon on Saturday, and my daughter-in-law, son-in-law, grandson, and I are playing UNO under the pavilion. The rain is pelting the metal roof, ping, ping ping. The fog and clouds surround us, and we can feel the wet heaviness of the air. But we are dry.
The three of us are enjoying beer, “It’s five o’clock somewhere” (I know I said it was noon, Eastern time), and one is nursing his water.
Sometime in June, Mitch and I were in a big box store and I fell for two cute tomato plants. They were wagging their leaves just waiting for somebody to take them home. I named them Toms. Two months later, I hired a Tomato Plant Hitman. Let me explain the juicy tale.
I Never Claimed to be a Gardener
I brought the plants to our home near ski country. Since, we are not there each day, I also bought two self-watering globes. The concept is that the globe will release water when the plant needs to rehydrate. The water supply lasts two weeks. Or so they say…
Picture yourself cradling a tiny human, barely tipping the scales at two pounds. The infant is attached to life-sustaining machines that monitor their heart, oxygen, and respiration rate. Various tubes provide essential nourishment and air. The newborn is swaddled like a cocoon and snuggled in your arms; you are a compassionate stranger helping a newborn acclimate to the world. This is one of the lucky babies well enough to be held by a Neonatal Intensive Care Unit (NICU) Baby Rocker. I was one of those privileged rockers among an eclectic group of volunteers.
I was NOT THIS CALM!
Our daughter, Jessica, started her life in the NICU. She was born small-for-date, meaning that at nine months, Jess weighed 4.5 pounds. Later, we found out that our daughter had significant disabilities, but at that time, we only knew she was our small, petite baby girl.
Mitch Holding Baby Jessica, April 1982
Touch
I understood the heartbreak of a newborn starting life in the NICU. The feeling of fear and isolation for families is palpable. The selfless volunteers and staff that help each family cope is extraordinary. And I knew that I wanted to return the generosity to other struggling families. After retiring in 2016, I returned to the hospital as a volunteer. For several years, prior to Covid, I volunteered in a Level IV NICU, which cares for the most complex and critically ill newborns. Mothers, fathers, and grandparents gently rocked their loved ones who were fighting for their lives. Beeping monitors and numerous tubes attached to their child are a constant reminder of their baby’s fragility. Some infants are too weak to leave the incubator controlled environment, their loved ones provide touch through incubator doors.
The Power of Touch
Touch is vital for a newborn’s development and is especially comforting for sick or premature babies. Did you know that touching newborns can help regulate their temperature, heart rate, and breathing? A hand on a newborn helps them feel safe. Touch can also help with digestion and neurological function.
Yet, some babies are alone in their plexiglass world, with the noise of pumps, oxygen, and alarms ringing all day and night. Many families have young children at home and are unable to spend entire days with their newborn in the NICU. Some babies live in the NICU for months, and the parents eventually need to go back to work. Other families traveled a great distance to get the expertise of a level IV NICU and can not stay in a hotel for weeks or months on end.
NICU Care
My fellow NICU rockers and I provided the compassionate care. We are women and men, some with medical expertise, but most are non-medical folks. Many of us are retired and want to care for the newest generation. We rocked, sang, touched, and talked to the struggling babies, providing the essential connection that is so vital after birth. Garbed in yellow isolation gowns, gloves, and masks, we swaddle the baby with love, comfort, and the powerful human touch.
My first time rocking was frightening. What if I accidentally pulled out a tube, held the baby wrong, or didn’t recognize an emergency? All those fears faded when the nurse gently placed the first NICU baby in my arms. All my motherly love and instincts snapped into place, and I was just a woman holding a beautiful baby. I sang songs, sometimes played music, looked into their eyes, and told them, “This will improve. You are loved, and we are so happy you are here, little one.”
Not Always Smooth
Yes, there were mishaps. I am known to be a bit of a germaphobe, so volunteering in the NICU was sometimes a challenge. My most memorable moment was when a tube detached from the infant I was cradling. Blood spurted everywhere, including my gown! I tried to remain calm until a nurse rescued the baby, “ me,” and repaired the faulty tube. After the baby was safe, I became overcome with worry. I had a cut on my arm and was concerned about the possibility of blood contamination. Not knowing why the baby was in the NICU, I was concerned about the risk of a blood-transmitted disease. I had young grandchildren at home; was I endangering their health by helping other babies?
The nurse suggested I go to Employment Health to discuss the incident. The head nurse in employee health sensed my anxiety. She looked up the health record and, without defying HIPAA, told me that I was not at risk from this helpless infant.
This brief incident increased my awe of the medical professionals who work daily under these conditions.
A Privilege
WOW! I needed a Hair Cut!
Our daughter Jessica, taught me about the power of helping others. Community volunteers who chose to engage with our daughter and their housemates, bring a overwhelming sense of gratitude to families. I felt the need to give that gift to other families.
There were more moments of genuine peace and warmth, which could be one of the most important things to give a newborn and their family. You are not alone, little one. The world is full of kindness, love, and compassionate strangers. And an occasional anxious volunteer who overcomes their nonsense to provide loving care. I am thankful for the privilege of rocking so many babies.
For More information on volunteering at Kaleida Health, click here.
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