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


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.