Five Years ….

Five Years…

I have the memory from when I was a child. My father was a lifeguard at Smyrna Pool and every day I would ride up the steep hill on South Street to meet him while he worked.

I loved being there because there were few rules and even less enforcement of them.

Here are the rules we lived by at the pool:

Number one, don’t run! Not because we would get in trouble but because we would get ‘hot foot’. ‘Hot foot’ got its name because when you ran on whatever medieval wrap they put down around the pool, the skin on the bottom of you foot would start to peel off.

Number two, obviously, don’t pee in the pool. My Dad was a prankster and had found a chemical that he could put in the water so that when it mixed with urine, it would leave a purple trail! No one wanted to be caught with a purple trail behind them!

Number three, you weren’t allowed to dive off the diving board until you could swim across the length of the pool without taking a breath! (I later learned that my Father made up this rule specifically for me. )

The memory I have is from this one day when Dad, was sitting in his usual chair around the pool, and I was playing in the water surrounded by a group of boys. I was never one to shy away from good trouble, so I began dunking them as payment for them tormenting me.

Soon the group of four boys had completely overpowered me. One dunk, up for air, a look at my Dad…nothing! Two, same thing. Three…Dad, “a little help here” …four…and…Dad officially lost it!

He started grabbing the boys pushing their heads under the water and holding them there a tad bit longer then necessary. He was making the point: don’t mess with my daughter!’

That’s the image I had in my head January 10, 2018 as I received the news that they had found a cyst in my right breast. “Lord, a divorce, a son with Juvenille Diabetes, a daughter with a traumatic brain injury, a son with Down Syndrome….and now …this?

Breast cancer had never even crossed my mind. I was healthy and young and I had nursed my four babies for a total of eight years ( yes, I nursed each baby for two years!) plus we had no history of it in our family. How could this happen?

Through a series of genetic testing it was determined that I amJewish, Ashkenazi to be exact. There were rumors that my great grandfather Michael had come to America to escape persecution, for a better life. Yet it was murmurings, hidden.

I sat in the doctor’s office and was told that I carried the BRACHA gene. That it could lay dormant for generations and then suddenly appear within a ‘suspicious carrier’. Yes, my mom found a t-shirt.

When the doctor did the lumpectomy, they found a trace amount of cancer cells in one lymph node. Me being the more-is-more girl that I am, I decided that we would throw everything at the disease we could so I signed up for the ‘Red Devil’.

This specific drug got its name because of its color ( bright red) and it comes with harsh side effects including hair loss, severe nausea and vomiting. I also thought it was appropriate that the dose of the Red Devil should begin on my 50th birthday.

On the first day of treatment, also my 50th birthday, the nurses came out in Hazmat suits, while my youngest daughter, Mia looked on. At only 18 years old she had volunteered to do the driving and chemo rounds with me while Joe worked and Mom and Marley watched Noah.

After the first dose, as predicted, my hair started to fall out, and Stacey held my hand while Laura shaved my head. I don’t remember mourning the loss of my hair as much as I remember being so grateful to have someone I love to do it.

Week after week of treatment, I got thinner and thinner. My arms became stick-like. My eyes were huge in my face. Noah would cry if he saw my bald head but I hated wearing the wigs, so I began wearing the little crochet caps the ladies would bring to cancer center.

Finally on May 10th, the chemo was done and the radiation was set to begin. I thought that radiation would be the easier of the two.

Every day I drove to Christiana for the next six to receive my treatment, then back home.

The nerves in my arms were so damaged by the PIC line and treatment, that I could barely move them. Thankfully, God provided me a masseuse, who faithfully rubbed my arms three times a week so that I could at a minimum, function.

I watched the clock, as I lost my mind. When people say that, and you think it’s a superlative…that people don’t really lose their minds. But whatever it was at the time, I was holding on to my life, myself and my reality by my fingertips. I was underwater with too many hands holding me, but unable to gasp for breath.

Even though it was the summer, life was gray. I tried to smile. To laugh, to say, ‘fuck you cancer’ …as survivors do. But time passed, and the sky remained gray.

The time came to ring the bell that you’re supposed to ring after you had received the last of the radiation treatments. What is supposed to be a momentous occasion is in reality, eerily lonely.

The morning of my next to the last treatment, I called the radiologist and told him I could not do one more treatment…not one more. Then he asked if after the 39th treatment that morning, if I could wait six hours and do the 40th treatment that same day. I agreed.

That day after number 39, I waited in my car in the parking garage in the middle of July. Watching the clock tick down…the radiologist stayed late, it was a Friday in the middle of the summer. No one was happy to have to do this.

I dutifully climbed up and allowed my self to be burned once again.

Once the treatment was done, I got off the table, and went into the dressing room. The technicians were already discussing their big plans for the night.

I walked out of the room, and there on the wall was the gold bell. The gold bell that you’re supposed to ring when you complete treatment. The bell signifies the end….but, I walked by it without a second glance.

For weeks all I did was sleep.

All I wanted to do was sleep. There was never enough sleep.

My mom would graciously wake me only to find me asleep fifteen minutes later. It was decided that my family would they take me to my happy place, otherwise known as the beach.

As soon as we got to Cape Henlopen, I made a nest and curled up,zoned out. After a while, Joe woke me just to move my chair to the other side of the pier. As I was trying to move my chair, I ended up with my head on the bottom of the seat. I looked and acted like a inebriated sap.

That’s when I started seeing a psychiatrist who told me that I had situational depression. I learned that our brains have a ‘lever’ and the lever gets triggered when something happens and then pops back into position after the trauma. When cancer hit, mine pressed down and never resumed its rightful place. My take away from my time with her was, to make a move change a thought. She told me I was perseverating on thoughts. The thoughts would then spiral into out-of-control emotions. But if I moved, it would change the track my brain was on. So, move I did.

My poor mama walked more trails, beaches, and loops that summer than she ever expected! We went on endless hikes, and aimless wandering through marshes and farmlands. Me, deep in thought, and her faithfully by my side.

I eventually found ‘Even’ again. With the help of Joe, the kids, the outdoors, the Lord, and especially my sweet Mama we limped onward.

Fast forward five years, and I’m sitting at what I call my soul doctor’s office retelling her my childhood memory of that one summer being dunked at the Smyrna Pool by a group of boys, when I finally realize that my Heavenly Father has let many bullies pull me asunder but the final blow was unequivocally His! I…still…standing! There is still more to be done!

Linking arms at the jetty
Summer 2018
Cortez 1 year anniversary
Mar standing in solidarity with me March 16, 2018

Special thanks to Kira Jean-Simon for taking the time to edit this piece. My editor a.k.a Mom found it too painful. If you need any copywriting please reach out to her on Instagram at kirawrites_copywriting

The Bite

Noah on the Dover YMCA Swim Team Circa 2016

This past week, while at lunch with Joe’s family, Aunt Millie was retelling an oldie but goodie of Noah’s. I told her I would include the story in my next post.

Noah from a very early age was a great swimmer. His oldest sister, Zoe had him swimming in the deep end of Maple Dale Pool at three years old. Having three older siblings who loved the water led to most summer days in the pool or ocean.

Zoe and Malia were both on swim team at the Y in Dover. Zoe was also a lifeguard. We seemed to live at swim meets. One year they were having tryouts for the younger swimmers, and the girls implored me to let Noah try.

He knew all the strokes, it was getting him to swim from one end to the other that was the problem. He would often get distracted and ‘duck dive’ to the bottom of the pool. Splashing while doing laps was the norm. Some parents would grumble during practices and say under their breath that he should be in Special Olympics instead of the Dover Dolphins. (I am looking at you Tracey!)

The coach of the team asked if I would sit on the board, since the girls were on their fourth year. Since the team had been run for decades by the same cliquey group, Brendan thought it was a perfect time to bring in fresh ideas.

It was decided that I would coordinate the volunteers and get them plugged in to open positions. The day before the first meet, the kids were swimming, the adults were all lined up and I was ‘on’!

I had parents learning to time, others learning to run the scoreboard. I had a group that was stocking the concession table, others making the lists of donations that were needed for the meet the next day. I was inwardly giving myself a pat on the back for how smoothly things were running. I can do this!

Somehow I lost the ‘why” of why I was doing this!

The next day was the big meet. People were checking in, balls were in the air. I was large and in charge, just the way I like it. I got Noah lined up on the block. Goggles, swim cap, suit, stroke all checked. I gave him a hug and told him to do his best.

Joe was running late at work. This was my nudge to slow down and focus on why we were there. It wasn’t so that I could run the show, which of course I could. It was to support our kids and give Noah any extra instruction he might need to successfully compete.

The races started! I missed it! That’s o.k. I’ll catch the next event. Uh-oh their was a problem at the grill. While I sorted that out, Noah was getting ready to swim his next event.

As I walked to the pool a very angry father came over to me. He started screaming at me and pointing at Noah. What. In. The. World. I looked at my son, trying to gauge what happened. He nonchalantly looked back. The man’s son was sobbing beside him with a huge bite mark on his thigh!

Apparently he was racing Noah in the butterfly (Noah’s best event?) and when he started to pass him, Noah turned his head and bit him!

Mortified, I stammered, apologized and took Noah’s goggles off so that he could look his victim in the eyes while he apologized. That’s when the father saw Noah’s disability and quickly walked away.

Joe walked into the pool entrance and was quickly filled in on what had just taken place. My man was MAD! Not at Noah, at me! He started to raise his voice (which he seldom does) and told me my priorities were all wrong! Our oldest friends came by and tried to usher us in a corner, but Joe wouldn’t have it.

He wanted me to resign my ‘important” position and do what only I could do, parent Noah. Ever since Joe married me at 23, he has worked tirelessly to provide for the four kids and I. Often working 60 hours a week to allow me to homeschool our children. Often that means he misses out on events and programs.

I sheepishly went to Brendan and resigned from my position. I spent the remainder of the season, cheering on our kids and being on bite patrol. It’s a mistake I repeatedly make. I want to believe that parenting a child with special needs is just like parenting my typical children. It is…until its not. It is during those times where things go off kilter, that I need to be ready to step in and give the extra support needed.

Noah, now at 16 needs me less and less. Still the text, call or email comes where extra love and care is essential. I am so grateful for the grace given to me by my family, Noah’s teachers and friends as we grow up together. Doing hard things with great love.

Something About Ezra

Biking in South Beach Miami

Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up. Also, if two lie down together, they will keep warm. But how can one keep warm alone? Ecclesiastes 4:9-12

One of the many blessings that happened from the Little Red School House was that Noah was always surrounded by friends. Some came for the school year then drifted out of our lives, others are still friends to this day 13 years later.

Ezra and his family came into our lives from Virginia Beach. His family came up to help with a church plant we were involved in. Since Ezra and his brother Titus were about Noah’s age and homeschooled, I extended an invitation for the boys to become part of our class.

Right away Ezra became Noah’s guard. Noah was a runner. When he was little he would escape the securest of settings. We had to install keyed locks on all our doors, and if he went to any event, he would have to have a sibling or friend on Noah duty.

Noah was 4 and Ezra was 3 so most interactions were short play dates or co-op classes on Thursdays. But as the boys began to mature, sleepovers and weekends with our family became the norm.

One day Ezra told us he was moving to Oklahoma. His father had been offered a pastoral position at a church in the area, and the family was moving. We were heartbroken! We knew that long distance friendships were hard and at such a young age, it would be almost impossible to keep the boys close.

Noah talked about Ezra daily often. Little did we know that hundreds of miles away, Ezra was doing the same thing! Ezra’s middle name is David and Noah’s is Jonathon and just like in the Bible, this friendship was destined to be for life!

My incentive to get Noah to read, was a trip to visit Ezra in Oklahoma. Everyday he would struggle with phonics and sight words, knowing if he accomplished his goal, he would get to see his friend. Months went by with little progress.

One day there was talk of the family moving back to Delaware! Could it be? Even if Ezra was somewhere in the state, that was better than half way across the county!

It turned out that Ezra moved a mere seven minutes from our farm! Reunited and it feels so good …The boys picked up their friendship as if no time had passed. They were inseparable. Ezra came everywhere with us. He knew all of our extended family and friends. I knew his likes and dislikes. When I’d do my grocery order, I’d always include Ezra’s favorites.

Trips to Miami, our beach house, birthdays, Longwood…you name it Ezra was there. He has prayed for Noah through countless hospital stays, and often modeled correct ways to handle chick buffets!

As the boys reached high school, their friendship looks completely different than it did years ago. We don’t see Ezra as often, but when we do, the visits are filled with laughter and inside jokes. For years, Ezra would go with mom, Noah and I to the beach house. we would refer to it as The Office. Soon a group chat titled the office was started between all of us. Touchdowns were shared, dates and times of games given, invitations extended.

Our last big visit with Ezra included a family dinner where Noah was presented a harmonica ( thanks Mom) soon the boys had set up stools, and were holding coat hangers (for microphones) in their toes while singing!

The Office

Minecraft camp, fishing at The Point, the infamous Jitters, Wawa run ….I could write a book filled with the boys capers. This brother from another mother will always hold a special place in our families lives. Not only did he help Noah grow up to be the amazing sixteen year old he is today, he completed our family! Ezra means helper and help he does!

Did someone say cheese?

Soon after Christmas we settled into wintertime in Delaware. as anyone who has lived here for any length of time knows, it’s a crap shoot. We can go years with just an inch or two of snow or have so much snow roofs collapse and we are snowed in for days.

Our farm has a very long driveway, the property is shaped like an axe, with the drive being the handle. Woods surround both sides. It winds between mounds of daylily, hence the name Daylily Farm. Up the drive about a quarter mile you see my house on the left. If you continue on the path, it veers around and Mom’s house sits in front of one of two pastures with ponds.

This particular winter was brutal. We seemed to have had an unusual amount of snow and bad weather. January is a notoriously bad month for homeschooling, monotony sets in and the kids are coming back from Christmas break. The weather channel was predicting a snow storm that could produce record amount of snow. Joe and the kids were beyond excited. Whenever there was a couple inches on the ground, he tied the sleds and snowboards to the back of the tractor and raced down the drive with the kids falling being pulled behind.

The days are spent with one eye on their studies, one eye on the weather. We woke up to a winter wonderland. The trees were sparkling with fresh snow. Our four horses were delighted and were galloping through the snow drifts. It was breathtakingly beautiful.

The big kids suit up, while I bundled up Noah. Joe revved up the John Deere and attached the sleds. Everyone was waiting on Noah, who couldn’t remember ever seeing so much snow. I opened the door to the deck and placed him on top of the snow, and he fell face first into the pile unable to move his arms or legs.

They were finally all on a tube, sled, trash can lid or snowboard. Everything that was not tied down is fair game for sledding. Marley built snow mounds over the picnic table and practiced his twists and turns on his board. Days seemed to go by and the snow was still as beautiful and deep. We had no idea what was going on in the outside world. Our farm is so far off the beaten track, our roads are among the last to be plowed.

Joe went back to work. Life still revolved around the snow. Wet gloves, snow pants, and hats were everywhere! The woodstove was running continuously. Mom called mid day with a slight edge of panic to her voice. They were dangerously low on propane. She called for a delivery but the would not come unless the driveway was clear. Even with Joe and the kids going up and down the drive a zillion times, there was no way a delivery truck was going to make it to deliver the fuel.

Mom and I are modern day Lucy and Ethel. We have gotten ourselves into and out of so many zany capers. When Ethel a.k.a Mom gets ramped up, it doesn’t take long for me to join in the hysterics. I call Ricky Joe and start screaming! The winter wonderland is not so wonderful anymore. Mom and I decided if the heat runs out they would come over here, and we will just have to make the best of it.

No sooner were the words out of my mouth when I saw my husband coming up the driveway spraying liquid out of the hose of his truck! You know you’re a redneck when….

Every Tuesday Joe emptied the cheese waste from a little shop in town. I guess it is steaming hot and right around the corner! It was a sight to behold. Joe driving this huge truck down the winding driveway melting the colossal amount of snow with this gray concoction! I am both horrified and thankful.

He got to our entrance, tooted his horn, waved and drove to his next job. My hero?! Mom got her propane in the nick of time, crisis avoided for now. The driveway now a grey sludgy mess, no longer held the appeal it did earlier in the week. Studies resumed. To honor my hero, I made fondue for dinner!

A Beloved Christmas Classic?

The infamous train ride

Christmas Eve with all its talent show shenanigans was always at Mom’s house. I had the privilege of hosting Jesus’s birthday breakfast at my home. We would begin the morning with cinnamon rolls shaped like a Christmas tree and sing Happy Birthday to our Savior. After that the presents and mayhem would begin.

Stockings, even to this day have always been my kids favorite. It was a good transition for us to sort gifts, grab our coffees and get settled. We tried to do round robin, where we took turns ooohing and ahhhing as each person opened their presents, but it never worked. Noah tore into each gift like a bulldozer. Chris, my step-father’s OCD kicked in and he would try to match Noah’s unwrapping with equal parts clean up.

This particular year Noah was not enjoying the season as he usually had. Every time I brought out decorations, he would hide and shake. We would ask what was wrong, but he didn’t have the ability to communicate what was troubling him. We had mechanical deer we would put out by our side yard each winter. We would string lights along the fence and around the arbor and the deer would light up and move their heads up and down. In Christmas’ past Noah had tried to put the leash on them and take them for a walk. Sometimes he would try to feed them dog food. However this year, he had an absolute meltdown! He screamed and cried until we finally put them away. What in the world was wrong? No one in the family could get to the bottom of Noah’s aversion to the deer and the decorations.

The week before Christmas we joined the Down Syndrome Community-and took a holiday train ride through Hockessin. All the homes were lit up, carols were being sung. It was a picturesque night! Noah was subdued but wearily watching everyone at a safe distance. As we rounded the corner everyone started clapping and whistling, there on the side of the track, was a house with a zillion lights. It was an absolute feast for the eyes. It had inflatables, Santa and all his reindeer…I inhaled ready for a meltdown… never came. Hmmmm, maybe we had moved past the hysteric festival phase?

The thing about the Western Railroad is, on the ride out you get to view one side of the tracks. When they come to Mt. Cuba, the caboose becomes the engine and you switch seats to see the other side. Santa came through the cars handing out candy canes, Noah waved cautiously to him. Joe and I locked eyes, congratulating each other. Noah and Malia were looking out the window as we were almost to the end, when Noah out of the blue, started his Christmas Meltdown, but this time it was a level 1,000! Thankfully the Down Syndrome community was very understanding and parents gave us encouraging glances instead of condemning glares.

We hurried off the train, as soon as it stopped. What in the world happened? Malia, our special needs expert, started to recall the events that led up to his hysterics. She told us the house had cartoon cutouts of the figures from Rudolph. Weird, Noah had never seen that movie. Why would he be afraid of a cartoon cutouts?

The next day, Stacey and her kids came to exchange presents with my kids. I started telling her about the train ride and Noah’s outburst. All of a sudden her son Alex, chimed in….”Noah doesn’t like Rudolph!”

After asking Alex for an explanation, he told us that he was Noah’s buddy at Embrace Ministry. For the December respite, they played the reindeer classic. When it got to the part of the abominable snowman Noah freaked out!

Light bulb! So that explains the sudden fear of the deer. The cartoon cutouts had the yeti right by the tracks! Thanks to Alex the mystery was finally solved. To this day if Rudolph the Red Nosed Reindeer plays on the radio or in a store, Noah covers his ears and cringes.

As we opened our presents that minimally decorated Christmas, ( thanks, Bumble) Noah’s one request was to get a tool belt, just like Daddy’s. We found a cute little leather one with mini tools, a hard hat and rainbow suspenders. Noah wanted to put on an encore from the previous nights show. He went into our bedroom to put on his fixer gear. We all were eating and drinking waiting for Noah to appear. All of a sudden, Noah strides into the room completely naked sans suspenders and tool belt!

Now that would have been a winner at our family talent show for sure! 😳

Devil In Disguise?

Christmas Talent Show Trophy

Sometime within Noah’s first few years, we began having a family talent show on Christmas Eve. Anyone who came to dinner had to participate in the festivities. For a family that had little to no actual skill, you can imagine what we came up with. As the 24th of December loomed closer, it was all we talked about. Who would perform what with whom. Since performing was a prerequisite for eating, everyone begrudgingly brainstormed.

Ingenuity would be required for three of our family members…Gram, P-Pop and Noah. Mom decided she would incorporate Pop, Joe and I took Gram, and Zoe snagged Noah! ( the ringer)

Once you decided on your talent, it was top secret! You had to rehearse and get your props without anyone seeing or hearing you. Very, very difficult when we are all with each other 24/7. I would sneak over to Mom’s house and lock the door to Gram’s room…while Zoe and Noah would be over at our house stomping away upstairs. Malia had it easy because she could play the piano!

We celebrated the Talent Show over a decade long time period. My sister-in-law won over my heart the first year she performed, props, Toots! My son-in-law’s first Christmas with our family, was met with head shakes and guffaws. Word would spread and invites were begged for! It really was a spectacle to behold. My favorites by far: Mom crooning Santa Baby to Chris with her feather Boa and sparkly dress. Mia, Zoe and Noah changing the words to My Favorite Things , and of course my brother, Michael’s guitar strumming parody on the kid’s teenage life.

One year Marley, Noah and I taped glow sticks to our bodies, turned out the lights and went crazy to: Wild Cherry! We of course won for that one! Joe somehow managed to become prop and sound man. He rarely made his acting debut.

With Noah as mischievous as ever, he would wake up each day into everything and anything he could get his hands on. Extra locks had to be put on the doors because he was an amazing escape artist. If we were out shopping he would hide under the clothes racks, while we frantically searched for him!

When Christmas Eve finally rolled around, Zoe ingeniously incorporated this trait of Noahs into her act. The evening began with appetizers, champagne and the highly anticipated spot pick. This would determine the order the talents would be performed. Zoe and Noah’s slot was the grand finale, lucky pick.

Costumes were put on, chairs assembled, lights dimmed. Let the show begin! Pianos played, guitars strummed, Gram sang, we laughed until we cried. Finally Zoe came out dressed in a black party dress, waltzing with Noah in a cute angel costume with a halo. Everyone oohed and ahhed at out little blond cupid. Elvis crooned in the background, walked like an angel, talked like an angel….all of a sudden, Zoe ripped off the angel costume to reveal a shiny devil costume with a tail and horns! But he’s the devil in disguise, oh yes he is! Noah was dancing around, at a level ten for sure! Zoe had coached him so well, there was no denying it was the perfect act to end the night.

Secret voting began. The annual dispute of whether we were allowed to vote for ourselves was discussed. Ballots were then counted, Mom came out to announce the winner, in third place, winning a ten dollar gift card to Dunkin Donuts….Cathy and Chris! Second place with a twenty five dollar gift card to Olive Garden goes to….Kristen and Gramma Kate! Gram had a stroke in her late fifties and couldn’t speak but could sing a few bars, so I used that to my full advantage, sympathy vote, works every time! Finally the winner of the Nacrelli-Hunt-McGinnis Christmas Talent Show was…Zoe and Noah a.k.a Devil In Disguise.

Everyone sighed a relief that the show was behind us. We now had 365 days to scheme, plan and win back the coveted gnome trophy. This Christmas our family will be in Canada, St. Pete, Fort Walton Florida and Delaware.The gnome has been residing in Miami since before Covid hit. Even though we will be physically apart, the videos and memories of the Christmas Eve Talent Show live on!

Do you have a favorite memory or tradition that your family celebrates? I’d love to read about it.


Bluebird-a symbol of hope and joy

Noah was growing and hitting milestones that typical two year olds master. He was walking and getting into trouble. His speech was of course delayed. He had a few words, mom, dad, sis, bro, that, yes and of course no! We had started using sign language early to aid him in expressing his wants and ideas. We would have a sign language instructor come into our home every Wednesday evening to teach us how to communicate with our boy. What is really amazing about this memory is that even my step father would come to the lessons and learn this new language so he could interact with Noah. Week after week we would get out our book and practice signs. We would quiz each other and sometimes use only signs throughout our homeschool day. Joe will still catch my eye even a decade later and sign something to me . Zoe uses this skill with her babies as they develop their language skills. God has never wasted one lesson we have learned on our adventure with Noah. He has brought deaf friends in and out of our lives. Thinking about them brings a smile, knowing spoken language wasn’t a barrier to our love for them.

It seemed every time the seasons changed Noah’s breathing would become compromised and a quick stint in the hospital was the only thing that would cure it. We were on a first name basis with the nurses, they even started ordering Noah special toys and videos. The older kids adapted and would take turns spending the night with Noah and I in the hospital, while Joe and Mom held down the fort at home.

One year though it wasn’t routine. I took Noah to the pediatrician and as the pulsox kept dropping, we were told to go immediately to the Emergency Room. Thinking this was just another one of our bi-yearly stays, I wasn’t hysterical. We got admitted and went to our usual floor. The nurses greeted us, and took Noah to get the IV inserted. As any parent of a young child knows, this is torture! I hated watching them put him in a papoose and stick him repeatedly. I usually delegated this task to Joe, but on this occasion it was just me. After numerous failed attempts, Noah, the nurses and I were all crying. No one could get a viable vein to hold the stick. They finally took us back to the room and cautiously advised us to try to keep Noah hydrated.

The breathing treatments began in earnest and every four hours the respiratory nurse would comes in and administer the nebulizer, chest poundings and suctioning. This went on for days. Our normal stay was 2/3 days. By day four Noah was restless, bored and still not better. Friends dropped off drinks, food, prayer and clean underwear! Zoe, Marley and Malia were shuttled to swim practices, and co-ops. Their world limped along while my life with Noah in the hospital stood still. I kept asking what we could do to improve Noah’s breathing, the doctor had tried steroids,increased breathing treatments, antibiotics…but Noah’s health was declining.

Finally on day seven, we were at our wits end! We decided we were going to have a meeting with the pediatrician. We were losing patience and disheartened by the lack of improvement with our baby’s health. We agreed that Noah would get transferred to A.I. DuPont. Talk of whether he would go by ambulance or helicopter ensued. As the nurses and doctors started putting arrangements into place, the severity of the situation became apparent.

A decision was made to take Noah by ambulance. We loaded up, I was in the front seat by the driver, a doctor was alongside Noah in the back with an oxygen mask, and a stern face. Mom followed behind, driving a zillion miles an hour trying to keep up!

Joe came home from work and rushed up to A.I. Wanda and Carol took the three older kids for the foreseeable future. They admitted Noah onto the respiratory floor. They again tried to get an IV into Noah since it had been seven days without one. This again was met with cries that ripped my heart out. Mom, Joe and I held hands, bent our heads and prayed that they could find a vein and his pain would stop….it didn’t happen. They made him as comfortable as they could. It was after midnight and everyone was running on fumes. We decided that Joe and Mom would go to my Uncle’s house near the hospital and get some sleep and return in the morning.

I would not leave Noah’s side. Around two o’clock in the morning alarms started going off! Immediately I was pushed aside and a small army of doctors and nurses started working on him. Lung…collapse…ICU…I overheard snippets of talk between the professionals. They looked at me and told me they were moving him to intensive care, his lungs were in danger of collapsing. What? We were just at Kent General. We were supposed to come up here and things would be ok. Is he going to die? No one would answer me. In fact, it was as if I was not even there. I tried to call Joe, nothing…Mom, no answer as well. I was alone and my baby was going to die. I could not breathe. I was frozen with fear. Help my baby, Lord, help!

They whisked Noah down into the intensive care unit where specialists were waiting for him. The first thing they did was insert a central venous catheter into his collar bone. The doctor told me that Noah’s lungs were filling up like a balloon but he could not exhale the air, so if they did not intervene his lungs would collapse. Nothing in this world is worse than coming face to face with your child possibly dying. Then to have to do it alone. My knees were shaking, no one asked my permission, they were doing anything and everything they could to keep our Noah alive. Even writing this years later, my heart races, I have a lump in my throat. Fight or flight is engaged.

They hooked Noah up to a bipap machine that would breathe for him for the next week. He would not be able to eat, drink or talk for the days he was attached to it. Mom and Joe found me downstairs the next morning…I had lived a thousand lives at this point. They stared incredulously at Noah,, who was ‘fine’ when they had left less than a few hours ago. No one would say the obvious, but we all thought it, if they had not transferred Noah yesterday, he would have died. Kent General is a county hospital, they were not capable of handling such complex medical issues. God’s providence in Mom demanding he be transferred saved his life.

When Mom saw Noah, she had an emotional breakdown. This had been going on too many days. She went to the doctor and asked for a Xanax! What she was offered was a coffee and danish.

Our pastor, friends, the kids, family all came to visit. The Berries left a thousand dollars in cash on the threshold of our front door so that Joe could take off work and not worry about finances. I slept either by Noah’s bedside or up in the Ronald McDonald room. Time was meaningless, the outside world no longer existed. It was just endless hours and days of the machine breathing for Noah.

After a week in A.I. (two weeks total) Stacey came for a visit. She asked me how I was really doing? What comes out of my mouth, still holds true to what I believe today….”I wake up each day, believing, truly believing he is going to get better. The bluebirds will sing, the sun will shine. Just like that scene in Cinderella. The one where she is doing endless chores but the birds surround her with their melody and the darkness isn’t so dark anymore.” We were walking around the children’s floor, each corridor had a name, we were turning onto Bluebird Court as I answered her question. Serendipitous?

Noah eventually got released and when we came home that night, the sweetest gift awaited us. The Berries had started a fire in our fireplace, turned on the lights, lit candles and had food waiting. It was like the warmest hug from our Heavenly Father. It was still touch and go those first few days home. Noah was so weak, he kept running a fever and every little cough would send us all into a frenzy.

That Christmas Stacey had given me a little bluebird tchotchke that I still have today. I still pick up every feather I pass. I gave a dove feather to my sister-in-law when her father died. My granddaughters get them in the mail, and I have received dozens of feathers from Joe. I named the blue heron who shows up at our pond each morning, Scout. The call of the geese flying overhead soothes my soul. No matter how hard my journey has been, He has never forgotten me or our family. His faithfulness surrounds me and sustains me. Tender Mercies.

The Plan

The original blueprint of the ‘plan’

As Noah got older and stronger his imagination grew too! He was constantly exploring with his preschool buddies. They would make forts in the woods and zip line to the ground. I know of three such hideaways on the property, but there could be a dozen more. A rusty chandelier would suddenly disappear, as would a plastic chair, cutlery and of course food. He and his best friend Ezra would create real life Minecraft structures with wood, bricks, shovels and pickaxes.

One day all the older kids had plans. Zoe and Malia were at swim practice and Marley was at the golf course. it would be a perfect time to take a hot bath and relax. I set Noah up with Backyardigan’s, a snack and a drink. I told him I’d leave the bathroom door cracked and to come get me if he needed me.

Things were peaceful…quiet…too quiet? Noah? In he strolled with a satisfied look on his face. He stood beside the bubble filled tub and started smoothing my hair back. “Are you o.k.?” I asked. He told me he was very sorry, that he loved me and would see me soon. Then he turned and walked out, back to his show. Hmmmmmm, not good, not good at all. I quickly dried myself off and got dressed. I peeked around the corner of my door, Noah was happily eating his popcorn laughing at his show.

I guess I was being paranoid. I walked into the kitchen and slipped on …oil? There was a whole bottle of cooking oil poured all over the floor! String, what? There was string tied around the legs of the chairs criss crossed over the walkway. Forks, this is really crazy! On the other side of the string lay a dozen forks with their tines pointed upwards. What in the world?

Nooooaaaahhhhh!! What is going on? In comes my little towhead with a mischievous smile on his face. “You fell into my plan,” he said. “Plan, what plan?” I asked. He then brought a rudimentary drawing out and showed me how I was supposed to slip on the oil, hit the string and land on the forks! Are you kidding me? I was in the bath for ten minutes! How in the world was this little booger able to draw his plans, execute them and come in and console me for what was about to happen all in ten minutes!?

Right at that moment my friend Wanda called. I told her exactly what happened and what I was looking at. Her reply,…”I don’t know whether to be thrilled or very, very worried!”

For weeks our kitchen floor had a sheen that would not go away. Noah’s master plan was retold far and wide. For weeks I slept with one eye opened wondering if I’d get my little angel or the devil in disguise?

Lightning in a Bottle

Having a child with a disability will bring out the very best and reveal the worst in you. They say that necessity is the mother of invention, I know this to be true. My fear of Noah being alone or left out, FOMOFYC, fear of missing out for your child, is real! Having a diagnosis of Down Syndrome is an odd thing, everyone would come to anything and everything I planned and hosted but invitations were few and far between.

Since my mom and I are both teachers by trade, I proposed to her the idea of creating a schoolhouse for Noah. A place where we could gather his friends once a week and offer companionship, learning and exploration. My mom, Cathy, is the quintessential decorator. When she was young, she would decorate anything and everything that crossed her path. One of my favorite stories is when she was younger, she would go down into the storm drains, where the water would run off the roads and adorn the space! She lived in a borough of Newark named Brookside.To this day, she/we run a staging company named Brookside Inc where we go into people’s homes and stage them so they can put them on the market. Just this week, I was redoing my dining room, and couldn’t make a piece fit, my text to Mom…Brookside#911….and immediately she appears ready to put her talents to use.

With that being said, Mom was all in when she realized that she would get to turn our unused migrant home into a play space. It combined her two loves, children and sewer decorating! ❤️ We painted the walls a sea foam green color and put big colored circles on the wall. Joe ( my handyman) installed a toilet donated by Stacey, whose son Derek was one of our students. Carol brought brightly colored fabric in pastels that we swagged from the ceiling. We painted the floor and added more circles. The doors were painted with chalkboard paint so the kids could draw on the walls. Easels were bought, bins were filled with puppets and crayons. Mom purchased smocks for each of the students with the Daylilly emblem stitched on them. It was a true labor of love.

Since Noah and his friends varied in ages from 3-6 the first year, with Noah being the youngest, I knew I wanted to minimize the gap in learning abilities as much as possible. The best way to do that was through song, rhyme and play. We would start each co-op with show and tell. Each student would bring in a possession and explain why the object was important to them. It incorporated so many learning domains: language, sharing, ingenuity, turn taking. Mom and I were included in this exercise so we could model all of these traits for our young explorers. Most children with Down Syndrome have issues with speech. Hypotonia and differences in the structure of mouths and tongue are a big reason why. When Noah would share his ideas and interact, all his friends quickly developed an understanding of his speech.

We would then work on language skills by introducing nursery rhymes. The cadence and tempo of these century old verses have proven reliable in helping children with memorization, singing and pronunciation . The kids would then pair up and perform a retelling of the rhyme their own way. The only caveat was that they had to work together and share the stage equally. Derek, Stacey’s son was the oldest of our students. He always wanted to go first, no matter what we were doing. One day I pulled him aside and told him, “those who are first on earth will be last in heaven!” Derek looked me square in the eye and replied, “I’m o.k. being last in heaven! “

We would snack together while playing a myriad of beautiful music Blue Danube and anything by Louis Armstrong were their favorites. Letters were learned, art was created. Each week we would take a book, for example, Wacky Wednesday, by Dr. Seuss . We would come to class dressed to match the theme of the book, in this case our pajamas, and do everything backwards. The kids were the teachers, we did outside playtime first, and afternoon snack was breakfast. We had a tire swing, a trampoline, four horses and chickens. There was no end to the mayhem we found ourselves in.

My oldest daughter Zoe, now has two little girls of her own, Charlotte-Mae ( Mae-Hem) and Callie Jo ( Calliegator) and she has recreated our schoolroom in her playroom in Florida. I see the play cash register, we used for the Green Pocketbook, the plastic bowling pins that we used for P.E., the cradle we rocked countless dolls in, the books that line her shelves hold a thousand memories.

We built the schoolroom so that Noah would be surrounded by love and acceptance, little did I know that a whole different generation would receive the blessings we created a decade and a half earlier. Each story, game, song and craft I do with my granddaughters reminds me of stepping out in faith years ago….trusting if we built it, they would come!

The Little Red Schoolhouse That Could

Christmas time of 2007 was filled with so much joy. We were learning that the Down Syndrome diagnosis, and ‘life in Holland’ was just different, not worse.

Noah at 15 months could scoot, crawl, cruise but not yet walk. We were preparing for all of the holiday festivities. Two of our best friends from Virginia, who happened to be sisters, had moved up to Delaware with their families.We decided that we were going to have a progressive dinner at each of our homes. We would each host a course and would move from house to house. Since Mom and I lived on the same property, and Carol and Wanda shared their land in Hartly, it would work out perfectly.

Carol had a daughter, Eliza that was turning 2 that December. She was agile, bright and adventurous. Her gross motor skills were off the chart, and even today, she excels in any sport she applies herself to.

As we entered the appetizer course at Carol’s farmhouse, Eliza ran to Greet Noah. She wanted him to follow her to the playroom to enjoy her toys. When she realized that Noah could only scoot and not walk, she did the most amazing thing, she got down on the floor and imitated Noah’s movements! For the rest of the evening, regardless of whose house we were visiting, Eliza and Noah could be seen scooting from toy to toy, engaging with the various friends and family.

This special bond, spread to Noah’s other friends as well. Soon he had a small core of typical kids that he would engage with on a regular basis. As I watched the friendships unfold, I knew I wanted him to be surrounded by all of this love and acceptance. In 2009, my mom and I began a preschool on the farm.

Daylilly Academy was established. We turned the migrant home in between our houses into a one room schoolhouse. We painted the walls, hung tapestries from the ceiling. A bathroom was installed. Things were donated, bought and repurposed. The first year we ‘enrolled’ five of Noah’s friends. Every Thursday from 12-3, the kids would get dropped off and bedlam would ensue. We did plays, crafts, songs, we fed our horses, did experiments, walked our nature trails and skimmed the ponds.

Year after year, the school grew until we were finally turning kids away because the schoolroom couldn’t contain more students. We watched the three and four year olds turn into seven and eight year olds. What a joy it was to not only have Noah’s life filled with so many friends, but to have the privilege of teaching alongside of my mother.

As time went on the academy whittled down to just Eliza and Noah. We took field trips, built elaborate structures, read amazing books, and performed exciting science experiments. Just like when Noah was a baby, Eliza would lead the way to his learning, carving out a path he was able to follow even if it was at a slower pace.

When I look back over the sixteen years of Noah’s life, the Lord was so faithful in providing a community of friends who loved him, and who we loved. I’m still amazed at all of people in our life who came to ‘Holland’ and enjoyed our little school there.