I wrote an essay about our daughter, Jessica, and planned to submit it to Exceptional Parent Magazine. Clicking the send button with my essay traveling the digital waves is like setting off an avalanche of ruminations. Fellow writers will understand the agony of waiting to hear what the editors think: 1. Will they take a hard pass, or 2. Accept, or even worse,3. No reply. I need to face the fact that more often than not, my story will not be accepted.
Screenshot
But Then…
BUT THEN, many months later, I received the email that we would be featured in the February Issue (page 25) of Exceptional Parent.
Jessica
I have been reading Exceptional Parent since 1982, when our daughter Jessica was born with a rare chromosome deletion. So, I am exceptionally honored and thrilled that they chose my story to share with their readers.
Choosing to move Jessica into a home of her own was one of the hardest decisions we faced as a family. We knew our daughter deserved a life surrounded by more than just mom and dad. But it’s complicated. When your child has a disability, one often thinks that the most compassionate route is to live at home with mom and dad.
I understand the need to protect and keep your child at home. We felt especially conflicted because Jessica is nonverbal and cannot express her feelings with words. But there will come a time when a parent can no longer care for their child. Planning for your child’s future is crucial to a smooth transition to adulthood. It is a compassionate decision. Exploring options for your loved one while you are able, rather than in an emergency, is a loving gift.
Our daughter’s face rises to the iPad display. Seconds pass before her joyful shouts fill the screen. She is using her unique language to tell me, “I see you, Mom”. Our 43-year-old daughter, Jessica, has severe intellectual disabilities. Though she cannot speak, she fully understands and participates in virtual connections like FaceTime.
Jess, I am excited to see you, too!
FaceTime with Jessica is unfiltered singing, laughter, and bliss. Her housemates frequently join in, singing all of Jessica’s favorites. And, I often wonder what the staff in the background think when my full-volume, off-key singing fills the call. For me, our chat is also a mom-to-daughter check-in because Jessica is unable to speak. “Are you okay, Jess?” (This story reminds me of the first post I wrote about FaceTime with Jess in 2020- So much has changed including how I post a blog!)
Our daughter Jessica is 43 and has severe intellectual disabilities. This is a parent’s perspective of defining our daughter by her abilities and strengths, seeing past the disability.
I love mashed potatoes, there – I’ve said it—boring, white, fluffy, buttery mushy mashed potatoes, steaming from the pot. My eldest daughter, Jessica, also loves mountains of mashed, earthy potatoes. Jess is unable to chew functionally due to a rare chromosome deletion and developmental disabilities. When her food is not a proper consistency, it can be a Recipe for Disaster. Mashed potatoes are her ideal food.
Recipe: Mashed Potatoes
Ingredients:
4 pounds of russet potatoes
2-3 cloves of garlic, optional
1/3 cup butter melted: salted butter optional
1 cup of milk or cream (confession – I use water or vegetarian vegetable broth)
Salt and pepper to taste
Jessica needs assistance with all the ingredients of her daily life. Think of every single thing you do, from waking up to the moment you go to sleep, and that is what Jessica needs help managing.
NO ISSUES WITH DRINKING, MOM! WELL, MAYBE SOME SPILLS 😊
Jess is 43 years old, and at age 25, she moved into a group home for individuals with developmental disabilities. Her home is two miles from our house. The five women-friends-housemates have round-the-clock staff who assist, including preparing food with the correct texture and consistency. Jess will choke if there are large, chewy, hard, or chunky pieces. Her food is ground up in a processor. As parents, my husband and I must have daily faith that her staff members pay attention to the details — all the ingredients. Food that is not prepared correctly can be a recipe for disaster.
OMG, this weekend’s weather “forecast” A good time to repost my award-winning Vegetarian Chili recipe – Stay Warm and Safe – XOV
Each year, before Covid, in the small resort town of Ellicottville, NY, a Texas Chili Party rounded out the summer festivities. Every participant brought their award-worthy chili creation. You may think Texas Chili includes a lot of meat, and for the most part, it does. But I am a vegetarian and decided to enter the contest with a Vegetarian Chili.
It was a risk, but what the heck? What is the worst that could happen?
For parents of children with disabilities, especially those managing rare chromosome disorders, moving can feel like a full-time care plan stacked on top of packing boxes. Moving with disabilities brings accessible relocation challenges that standard checklists ignore, while families still need routines, therapies, and emotional steadiness to hold. Disability-friendly moving guidance can make the process feel clearer and more manageable.
Grey hair under a bedazzled baseball cap, Joan waits for another Mah Jongg (Mahj) player to arrive. The community location is the Big Pine Key Library, approximately 32 miles from Key West, Florida, and 1,400 miles from Westbury, Long Island, where I grew up.
Mini Full Grown Key Deer
Mitch and I spend time in the Florida Keys, where he aims to fish every single day—truly, every single day. My last blog described our JAWS-like encounter on his boat. While fishing isn’t my thing, I join Mitch, so I’m not completely a S%!t wife.
Dun-dun… dun-dun-dun-dun-dun-DUNNNNNN. My funny story is in The Buffalo News! If you don’t have a subscription, the free version is below
CLICK PHOTO TO READ IN BUFFALO NEWS
.
My husband Mitch loves to fish. I’m not just talking about, “Hey, let’s go for a few hours.” Fishing to Mitch means hours and hours — I have no attention span for that, and there is no bathroom! Only the bucket, which reminds me of my first RV trip! Mitch’s ultimate unfulfilled quest is for the elusive tarpon. My attention came into focus when we spotted JAWS in the Keys. Was it a tarpon? A shark?
First Mate
So, I am going on my three-hour tour on his boat – cue the Gilligan’s Island theme song. He is fishing with two poles while I am talking on my phone to my friend, Sheryl. Yes, we have great cell service on the waters in the Keys.
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 naive, 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?
Glasses slipping down her nose, eyes focused on her two students. Her markers are lined up in rainbow order, and papers are stacked neatly on our couch as she prepares for her first class. And I prepare for lessons from my six-year-old teacher.
Mitch and I bought our granddaughter, Noa, the Pretend Play Teacher Setbecause, at 6 years old, her dream is to become a teacher. It combines Noa’s love of telling people what to do with her love of doing things for others. For her first lesson, Gus (our Vizsla) and I were her students. Gus’s tail wagged back and forth like a pendulum as he waited for the class to begin.
PHONE
“No, Nana!” My first infraction came quickly, the dreaded peeking at my phone during class. I was caught midscroll when Ms. Noa immediately grabbed my device and put it in the phone box. “No phone Nana!” Hence, no photos of our school day.
My husband Mitch refers to my childhood home as “Tara,” the glorious homestead featured in the movie Gone with the Wind. My Tara was not antebellum style; it was more suburban Long Island ante-chic. But to me, it was home.
Westbury
We moved to Westbury, Long Island, when I was almost four, and my unborn brother was months away from appearing. My dad’s sister and her family lived next door to us. On the other side of our house was one of three homes belonging to cousins from another family.
Cheers to Westbury House – where everybody knew my name
Kids of all ages played kickball, argued, and shared birthdays. We even learned the “Cha-Cha” from neighbor Millie, who had once been a line dancer in NYC. One, two, cha-cha-cha! None of us was very good or coordinated, but Millie kept up the encouragement. Back in the 60s and 70s, all the neighborhood kids felt like cousins, connected by shared experiences.
“The City”
We were close to New York City. Throughout high school, I imagined living in “the city” as an adult, specifically on the Upper East Side. My vision included easy access to Bloomingdale’s and all the new Broadway shows. I did not consider how I would afford any of it at the time.
The City
My childhood home became legendary to me because I felt safe and loved by my family, and embraced by our small community. Before you start thinking it was idyllic, it was not. I was rebellious, always fighting the rules and curfews, and trying to get my way! Yet the secure foundation gave me the confidence to navigate tough times as an adult and kept me grounded.
Thank you, Betty Vaughan, for an engaging and informative article for families.
Key Takeaways
Art helps children express themselves, especially those with special needs who may struggle with verbal communication.
Digital tools can aid in organizing and sharing children’s artworks, making their creativity more visible to others.
Creativity fosters essential skills like fine motor coordination and emotional regulation, but should avoid unnecessary pressure.
Adapt art activities to each child’s needs and let them explore without rigid rules to enhance focus and self-worth.
Technology can empower children with speech or vision challenges, allowing them to communicate their artistic experiences more effectively.
Image via Pexels
It can be hard to know where to start. The paint sets get knocked over, the music is too loud, the instructions feel vague — and suddenly art time becomes stress time. But for parents of children with special needs, the arts aren’t just nice-to-have activities. They’re lifelines. Creative expression offers structure without rigidity, emotion without pressure, and joy without preconditions. If your child struggles with communication, sensory integration, or focus, art might become their clearest and safest language. But the path isn’t always obvious — and that’s okay. What matters is that you’re looking for a way in.
About eight months ago, we began planning our dad’s 95th Birthday Party. His 90th was canceled by COVID in 2020, and we were grateful to get another chance. The “we” in this narrative is me, my brother Keith, my sister-in-law Cathy, and my husband, Mitch.
We celebrated 90.5 during Covid
Dad was hesitant to plan so far in advance. He tried to say, “Well, what happens if we can’t have the party?” My thick reply was, “Huh?” Dad, trying to be clearer to his dense daughter — me—said, “You know, what happens if I am not here?” I finally got it. “Oh, (head slap), we will just cancel the party!” I was trying to keep it light.
Age doesn’t determine whether you know what each day will bring. So, plan away, which is exactly what we did.
The morning of October 12th, I sat at my desk practicing Hebrew for my Bat Mitzvah that evening. I am not 13—traditional age for becoming a Bat Mitzvah in front of family, friends, and the community —that ship passed 55 years ago.
Six months back, I saw a notice at our Temple – Congregation Shir Shalom– for an adult B’nai (plural) Mitzvah class. Yes, I want to do that! In true Vickie fashion, I put it on my list of things I mean to do but don’t.
A month later, I received a text from my daughter Carly with an announcement about the Adult B’nai Mitzvah class. She knew it was on my “bucket list.” OK, OK, I’ll sign up.
Bat Mitzvah Day!
Beautiful Tallit and Yarmulke from all my kids!- this is the Bag
The morning of October 12th, as I sat practicing my portion for the gazillionth time, I listened to the news of the release of the remaining living hostages. Tonight we would be celebrating their release along with my Bat Mitzvah. And, although I can’t compare the magnitude between the two events, I love that I will be in Temple and sharing my personal memorable day with the humbling news of the hostage release.
I am Thankfull for all the below and more — This list is in no particular order — which, is actually how I think! 😉
Here We Go…
🦃My Father-in-law survived his medical crisis and is on the road to recovery — and his family surrounded him 24/7. A lot of togetherness, like “a lot,” but every moment felt meaningful and healing for all of us!
NOT US!!!!
✈️I got on a plane and survived to write this sentence — and to Mitch, who consistently tells me I overpack!
🦃Our kids fought over who was going to host us for Thanksgiving — yes, it got complicated, but geez— To Quote Sally Field – “They like us, They like us! “
🍴My daughter asked to borrow my fancy silverware — YAY! There is a chance it will not show up on eBay one of these days!
Daniel, our Italian Greyhound (IGGY), is 13 years old —and his body and he are trying to tell us something. Just a few days ago, he showed moments when he had a bounce in his newly awkward gait. But mostly, Daniel is medicated because he is in pain.
Is it his time?
Is it his time? Sometimes we say yes. And then, as if he heard our conversation, he gives another wag and a prance — and we know that neither he nor we are ready.
Doctors
Could be a tumor or disc disease. Perhaps it is an autoimmune inflammatory condition. The questions spiral like a tornado – the answers remain few and silent.
Because of his age, size, and breed, anesthesia could be fatal. Surgical recovery — months of pain and restricted movement — would be intense. And if it is a tumor and not a disc, it’s terminal.
Is compassion not performing heroic measures for an uncertain and painful outcome?
Our other dogs let us know when it was time. Is Daniel telling us now, but are we unable or unwilling to hear his message?
I searched his eyes for an answer; he searched mine for a decision.
We Schedule an MRI
We arrive early for our 8 a.m. appointment with the veterinary neurologist, and I think we are going through with the complicated sedation and testing. As we sit with the veterinary neurology tech, Matt, my husband, Mitch, says, “I have one more question.”
“What is the best scenario?”
Matt hesitates and looks us in the eye. The best scenario, he explains, would be one small disc that needs repair. The surgery is extensive, and the recovery and post-op are intense. The more likely diagnosis is a tumor that may have spread. He reminds us that, due to Daniel’s age and breed, the procedures are very risky, and Daniel may not survive any of it.
Compassion
Matt’s compassion — as a dog owner, a professional, and simply a good guy — guides his honest words. He leads us to a private room so that Mitch, I, and Daniel can make a decision.
IS THAT WHY I DON’T UNDERSTAND YOU?
Daniel has been in pain for weeks. The crate rest and meds have not worked. There are small windows where the meds are just right, so that I can lift him from his stroller for hugs, pets, and a visit to our lawn.
GUS WILL MISS DANIEL, TOO
Mitch says it is ultimately up to me, but he thinks it is the moment to say goodbye. My head knows this is the right decision. My heart is shocked that it’s now.
Together, we decide that this is Daniel’s time. The doctors agree — our painful choice is a compassionate choice.
With my head resting on Daniel’s and Mitch’s and my hands on his body, the doctor inserts the life-ending injection. Daniel slowly quiets until he is completely still. I feel the minute life leaves his body.
Fly over the rainbow bridge, Daniel. Your pain is gone, and our pain is growing. You are at peace, and we are heartbroken, but we are also at peace.
Daniel and his Vizsla brother Gus
Loading…
For inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir, Raising Jess: A Story of Hope!
We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.
Parenting a child with disabilities often means managing needs that never pause — medical, behavioral, and emotional. That weight doesn’t just sit on your shoulders; it leaks into the walls of your home. Maybe the meals are rushed, the conversations short, the laughter less frequent. Maybe your partner feels like a co-worker more than a co-parent. When stress becomes the houseguest that never leaves, it’s time to take inventory. What feels like tension between you and your child may actually be thedaily strain of caregiving that’s coloring every interaction. Naming the stress won’t fix it, but it’s the only way to begin untangling it.
Consider Outside Sources
If your job is contributing to your anxiety — whether due to overwhelming demands, poor management, or emotional burnout — it may be time to consider a long-term career shift. Re-evaluating your path doesn’t mean starting over; it means recalibrating toward work that fits your strengths, values, and lifestyle. For example, if you work in nursing and want better working conditions, shifts, and pay, you can explore flexiblemasters in nursing programs that support both career growth and family responsibilities. Programs like these can help you gain more autonomy, reduce chronic stress, and build a future that doesn’t require sacrificing your health for your income.
PREPARING FOR PEAK STRESS PERIODS
Some days are heavier than others. Medical appointments. Transitioning back to school. A therapy schedule that feels like a part-time job. These moments don’t just raise the volume — they can hijack your nervous system. That’s why planning matters, so startmanaging stress during transitions before they hit. Build a playbook before the chaos starts: pack snacks the night before, text your friend who always grounds you, map out parking in advance. Keep one small thing — even if it’s just the pen you bring — consistent each time. These steps aren’t about eliminating stress; they’re about shifting the ground beneath it. When you have a system in place, you don’t spiral — you act. You need that clarity for yourself and for your child.
SELF-CARE THAT’S ACTUALLY POSSIBLE
Forget bubble baths and spa days. For most special-needs parents, those belong in fiction. Real self-care looks like breathing in your car before pick-up, eating an actual meal, or texting someone just to say you’re unraveling. It means noticing when your chest gets tight — and choosing to pause, even for ten seconds. Self-care isn’t a luxury, it’s a circuit breaker. Without it, you snap — maybe not outwardly, but inwardly where it counts. By integrating self-care for special-needs parents into your regular routine, you’re not just helping yourself — you’re modeling coping for your child.
BUILDING SUPPORT AROUND YOU
You shouldn’t have to parent in isolation. There are people — local, online, even unexpectedly in your extended family — who get it. But you have to let them in. That means reaching out to the parent you saw at therapy, joining a support group, or looping your sibling into the daily load. Isolation breeds anxiety, but community breaks it. The strength you need isn’t always inside you; sometimes it’s relational. Your village may not look how you imagined, but it exists. Startbuilding a support network that gets your child — and gets you.
INTEGRATING CALM THROUGH CREATIVE TOOLS
Sometimes the thoughts come too fast. Your mind is juggling what-if scenarios, school paperwork, therapy goals, and forgotten laundry. Writing it down — actually seeing it on a page — can help quiet the chaos. Tools like aPDF maker let you turn mental clutter into something tangible: a list, a journal, a shared plan, a routine your child can see too. It’s not about productivity. It’s about finding structure in disorder, calm in motion. And sometimes that structure becomes a shared bridge — between your anxiety and their security.
You’re allowed to feel it. The fear, the frustration, the fog. But what matters most is what you do once you notice it’s there. Your anxiety doesn’t disqualify you — it invites you to build new tools, to find new support, to care for yourself in the margins.
Discover the heartwarming journey of resilience and hope in Vickie Rubin’s award-winning memoir, Raising Jess: A Story of Hope, and explore her insightful blogs for a blend of humor, wisdom, and inspiration.
(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENTS)
Loading…
For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir, Raising Jess: A Story of Hope!
We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.
Message me here or write to vickierubinauthor@gmail.com to set it up.
Everything hits me at once – is this the day the seizure will win? Will Jess be able to get enough oxygen? Will this be the seizure that doesn’t end quickly? And how much I hate F!@#$%^ seizures!
Jessica is unable to communicate with words, even when she is not in the midst of a seizure. Oh, how scared she must feel, and she will never be able to tell us.
Bravery
I want to run ~ Out of the room…Out of the house… And come back when the seizure is over and Jessica is well.
But, of course, I can’t. I wish I could say my fear encouraged bravery. However, my fear encouraged more fear.
Jessica’s dad, Mitch, my husband, is the brave one in this scenario. He is also fearful for Jess and, unfortunately, needs to manage me, as well.
Mitch tells me,”Call 911.” After that, he says, “Go upstairs and get supplies for our trip to the ER.”
He is taking me out of that room ~ giving me the steps that I need to collect myself and find my bravery.
Once the ambulance arrives, I am brave~ I am brave as we travel to the hospital speeding down the roads. I am brave when we sit in the ER exam room, as Jessica slowly wakes up… as Jess becomes herself once again.
The true brave person in our story that happened more than once and more than twenty years ago is our daughter Jessica. No matter what hardships she has~ she overcomes them and starts again.
Bravery isn’t always loud. Sometimes it’s Mitch calmly telling me, “Call 911… go get supplies.” Sometimes it’s me holding it together in the ambulance. And most of all, it’s Jessica—our daughter—who faced the unimaginable every single time.
Mitch
1984 and 2022 (Mitch and I haven’t changed a bit! 😉)
Bravo our brave daughter and thank you Mitch for the numerous times you helped me find bravery.
As I write the following words, my superstitious self is yelling at me, “STOP!!!!!,” and I hope that I am not putting a whammy on our luck. Jessica’s seizures “appear” (maybe using that word helps with superstition 😉) to be under control with medication. Perhaps, at age 43, other metabolic changes have occurred. So we hope and pray that Jess remains on this path.
Have you had a moment of bravery in a time of crisis?
Loading…
(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENTS)
We can discuss the real-life moments behind the pages, including parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book. Message me here or write to vickierubinauthor@gmail.com to set it up.
For an inspiring stories about Raising a Child with a Rare Chromosome Deletion, check out 3-time award-winning memoir, Raising Jess: A Story of Hope!
No judgment, please – We’ve bought another RV. This RV 3.0 is a camper trailer, unlike our RV 2.0 EKKO motorhome, which was second to RV 1.0 Truck Camper. The official name is Winnebago Micro Mini – and before you start thinking Mitch and I are sharing 10 square feet of mini space, (lord help us!) we actually have more room than we did with the EKKO. I told Dad that we were going on our maiden voyage and he named our rig the USS Rubin. How did CHATGPT come to the rescue during our first RV Camping trip?
Moving IN
Moving into an RV is like furnishing a home: linens , supplies and deciding where everything will go. Amazon is delivering all types of gadgets to our door (love that!). OK, maybe some of the gadgets aren’t exactly for the RV… It’s fun imagining our new space and all the ways I can become disorganized!
BEFOREAFTER
Our first trip was to a small campground called Chautauqua Gorge. It’s a lush, tree-covered site on private land bordering 563 acres of NYS land. It’s close to the Chautauqua Institute, Bemus Point, and other resort areas. All was going well until we…
Have you ever wondered how running water is supplied or where toilet waste goes? (Here is a funny reminder 😉). When you get to a site, you may be able to hook up to water. This means attaching your hose to the campsite’s spigot, giving your RV endless water for washing dishes, showering, and using the sink. But where does all that water go, you ask?
Well, you see, the campsite provides a drain hole. We connect our hose and drain the grey water tanks (sink, shower water). The black tank is, well, you can guess where that hose goes. Dumping black tank water is not high on my list of preferred activities.
ICK
Garbed in a mask and full gloves. Yes, Mitch rolls his eyes! I take on the role of opening the lid to the drain hole and inserting our hose. I am keenly aware that the person before us may have dumped their black water tank into that opening, and that thought is enough to make me want a full hazmat suit. But that would probably be grounds for divorce. So mask and gloves it is.
OK, This Has Not Happened YET!
Back to the USS Rubin
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 –
WATCH YOUR SHOES! TOO CLOSE!!!
Finally, we are back in the RV, sanitizing our hands, and I try to forget all the ICK.
ChatGPT-RV
But after we connected the hose for the first time in our new-to-us camper – PUFF! An “EWWW, that smell” filled our site. “Mitch, what is that rotten egg smell?”
The kid in the next campsite told his mom that he thought there was a stink bug nearby. Yes, it was bad. (Of course, I was immediately ready to abandon ship and go to a hotel)
Surprisingly, thanks to my love of technology and Mitch’s willingness to do the dirty work, we were able tackle the problem.
At one point, I heard Mitch say, “This will be really easy. I watched a video.” That gave me zero comfort!
ChatGPT Help
First, I took a photo and asked ChatGPT – She (he, they) suggested propane issues. After we ruled that out, I sent Chat some photos
Chat replied – “Thank you, Vickie – This clarifies – These are the next steps for finding the source.”
We went back and forth with this dialogue for about an hour until the problem was solved. Mitch, willing to get his hands and clothes really dirty, and me, who is willing to type questions and add photos, make a great team. I particularly loved it when Chat thanked me for the clarifications. It was like having a polite repair person at the campsite.
THIS HELPED! IGNORE THE CAMPING NAILS!JESSICA’S OPINION OF BEER!
Who You Calling Old?
Once the smell was gone, we relaxed (as did the kid next to us) and enjoyed our first trip. By the way, I heard the same kid tell his grandparents that there were old people in the campsite next to them. Oh, you mean us!? Thanks, kid!
We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.
Message me here or write to vickierubinauthor@gmail.com to set it up.
Mitch and I were watching The Gilded Age. As usual, I was half-asleep on the couch when I saw something flying.
“Is that a bird?” I asked.
Mitch already knew it was NOT a bird and was trying to decide what to do with me and the EEEEK! BAT! My voice sounded stressed as I headed to my “go-to” mode of panic-first, ask questions later.
Mitch told me to hide under the couch blanket while he went full Batman. He was overly optimistic about his Batman skills. After 2 minutes (felt like years) hiding under the blanket, I panted that I needed to go for cover in our bedroom. Yes, I knew I sucked—my panic and fear overcame me. On the other hand, the last thing Mitch wanted was for me to assist.
Meanwhile, the dogs watched the bat like it was a back-and-forth tennis match- Wimble-BAT-don—until Mitch convinced them to abandon the Bat match and go to the bedroom with me.
Bat Sh!t Bedlam
From the safety of the bedroom, I heard “BANG!,” “DAMN!,” “SHIT!” (and other words), but still no bat. For almost 90 minutes, Mitch was unable to capture the hiding bat. We put a towel by our bedroom door jam and decided to try again in the morning.
Match 1 – Bat wins
Match 2 – Calling Robin
In the morning, Mitch called our son-in-law Steve (Batman’s Robin) to join the search and capture. I stayed in the bedroom, Googling Bat-everything. Dr. Know-It-All Google was feeding me all kinds of information about bat poop—or guano—and other bat secretions. Google’s cleaning procedures reminded me of the first COVID-19 sanitation efforts from 2020. The one suggestion that got Mitch to listen was to capture and keep the bat alive so we could get it tested for rabies. Do not just chaperone the flying beast out the door. Side bar: As I relayed this story to friends, I have discovered that shooing bats out the door is indeed the preferred method of disposal among the non-Google persuasion.
Jessica I called our daughter Jessica’s group home to say I could not bring Jess to speech therapy that morning. I was not exiting my room until the bat was caught. I sent an email to Sarah, her speech therapist:
Good morning, Sarah. I cannot bring Jessica today for a reason you’ve never heard before. We have a bat in our house and I am hiding in my bedroom.
Sarah replied that I was correct; it was an excuse she had never heard used before.
Holy Batman!!!!!!!
Finally, I heard whoops and hollers from our loft—SUCCESS! “How?”, you may ask. Well, it goes like this: Mitch swiped behind a wall clock, the bat flew out, latched onto his shirt (cue screaming), and he and Steve trapped it with their nets. One net on top of the other, which created a cage of sorts. They secured it in Steve’s net. The sulking or perhaps sleeping bat was sent to a fishing bait bucket on our porch.
Match 2 – Mitch and Steve Win!
YOU SOUND STRESSED, MA’AM
When I called the Department of Health, the woman said, “You sound stressed, ma’am!” No kidding! She told me to stop looking at Google. The county instructed us to bring the bat in for rabies testing. If the bat tested negative, we were good to go. If the bat tested positive, that meant rabies shots for us and another blog. 😉
I calmed down a bit until the health department called and said, “The bat you saw last night but didn’t capture is not 100% the same bat that was captured this morning. We are treating this as a two-bat exposure.” Translation – two bats might have entered our house since we lost sight of bat 1 when we went to bed. She assumed it was the same bat, but there was a chance it could have been another bat. 🙄😲
We haven’t had any bat sightings, so we’re assuming it was only one bat.
Finally received the results from the Department of Health – Our Bat was Rabies Free! WHOO HOOO!
Loading…
(WOULD LOVE TO HEAR YOUR COMMENTS – PLEASE SCROLL DOWN TO COMMENTS)
We can talk about the real-life moments behind the pages, parenting a child with a rare chromosome deletion, the challenges and joys our family has faced, and the journey that inspired the book.
📩 Message me here or write to vickierubinauthor@gmail.com to set it up.
Dear Colin?, Mr. Farrell? Fellow Parent, Mr. Great Actor?,
Thank you for your wise words about living arrangements for your beloved son, James, diagnosed with Angelman’s Syndrome. Our daughter Jessica has a rare chromosome deletion (1q43-q44). Like James, she needs assistance with almost everything. Jess moved into her own home at the age of 25. As you eloquently stated in the Buzzfeed article, our difficult decision of choosing a group home was made out of love and concern for her future.
Thanks, Mom and Dad!
Your quote from Buzzfeed Article
“It’s tricky, some parents will say: ‘I want to take care of my child myself.’ And I respect that. But my horror would be… What if I have a heart attack tomorrow, and, God forbid, James’ mother, Kim, …is taken too — and then James is on his own. Then he’s a ward of the state and he goes where? We’d have no say in it.”
Group Home Choice
When we decided to move our daughter, Jess, into a certified residence, it was a painful choice. As parents, we felt like we were giving up, no longer willing or able to provide care. Yes, we knew we were establishing Jessica’s long-term care, a plan for when we couldn’t offer direct protection. Our minds believed it was the right choice – our hearts felt a bit broken. But as you stated, what is the alternative? We knew moving Jessica into a home in our community was crucial for her future and ours.
I Literally Started MOVING after I Moved to My Own Home!
Your quote from Buzzfeed Article
What his mother and I want is to find somewhere we like where he can go now, while we’re still alive and healthy, that we can go and visit, and we can take him out sometimes,”… He needs a bigger life than we can afford him, by having a sense of community that he feels connected to, by going out in the van every day and going to the supermarket and doing the shopping together, by going to the beach, museums, movies, all that stuff. Just a connected life.“
That’s Exactly It!
That’s exactly it! We always dreamed that Jess would live as independently as possible and be connected to her community. And it happened! Her housemates have become her sisters, and she has friendships and a community independent of us. And we are still a central part of Jessica’s world—her family. But like you stated, she also has a connected life.
I Always Connect with Dad!
Thank you for sharing your reasons for choosing a group home for your son, James. Although we will never meet and lead widely different lives, we do share the unique experience of raising a child with disabilities.
I have always been a fan of your work, and now I am even a bigger fan of your parenting and sharing your story to help others.
After two years of waiting and relentless phone calls, I was on the brink of losing Jessica’s hard-fought dental combo appointment in the operating room (OR).
Why was Jess going to the OR? How come we needed to wait two years? Why was this done at a Children’s Hospital when Jess was 43? Why, did they almost cancel our appointment two days before the procedure? What’s a combo appointment? And how did Jessica’s phenomenal Doctor save the Day? OK, OK, I will start explaining.
WHY?
Every Single Thing
Our daughter Jessica has a rare chromosome disorder and needs help with every single thing, including brushing her teeth. She fights the nightly brushing routine, and staff in her group home cannot force the issue. That would violate Jessica’s right NOT to brush her teeth.
For many years, we did not know Jessica’s correct diagnosis. We didn’t know that the DNA Jess was missing played a significant role in her development. Heck, we weren’t sure if it was DNA! And what does this have to do with a UNIQUE Little Red Book?
A rare genetic diagnosis gave us a name, a global community—and a spot in the not-so-little UNIQUE Red Book.
HOW LONG DO I HAVE TO SIT AND STAY FOR THIS PHOTO?
If You Do Not Have a Subscription to the Buffalo News, the Story is Copied Below:
The Meals on Wheels volunteer knocks on the door; there’s no answer. He strikes again, but still no answer. He calls the elderly gentleman who typically answers his cell phone, but the phone keeps ringing. He’s about to leave when he realizes there isn’t a container outside the door for the Meals on Wheels delivery. There’s always a cooler when the recipient isn’t home. Something doesn’t feel right. He decides to try the door handle.
The door opens, and he hears a moan. Lying on the floor is his client, *Joe (who is more like a friend at this point), who has fallen and is unable to get up. Joe’s phone was out of his reach. Joe does not have a medical alert device and has no way to alert somebody that he is in trouble.
He quickly bends down to talk to Joe. His instinct is to help him up, but he knows that is a dangerous move and can potentially cause more harm to Joe. He dials 911 and sits with Joe until the ambulance arrives. He discusses the possibility that Joe might need more assistance than his current situation allows. You see, this is the second time that he helped Joe in a crisis.
Dun-dun… dun-dun-dun-dun-dun-DUNNNNNN. My funny story is in 
