The writer is a Huntington Woods resident, retired Berkley High School English teacher and author of the book, "The View From Four Foot Two." This column first appeared in The Insider and is being republished with permission
By Judi Markowitz
On March 13th, 2020, my adult daughter, Lindsay, became a hostage of coronavirus. For someone with special needs, this date marked an imprisonment that had far reaching effects. Lindsay’s day program, New Gateways, in Waterford closed along with every other program in the state that serves the developmentally challenged community.
Covid had tentacles that were tearing at the delicate fabric of Lindsay’s world. How do you explain this absurdity to your daughter who is severely mentally and physically challenged? What can be discussed to make sense of the incomprehensible? The van that arrived at our house every morning to take Lindsay to her program suddenly was not there. Vince, the driver, who Lindsay looked forward to seeing daily, vanished. The people that she interacted with on a daily basis were no longer visible. It was as if The Twilight Zone were airing a new episode and we were caught in it.
Lindsay was born with Marshall-Smith syndrome in 1979. According to the sparse medical literature at the time, it was a death sentence. There were only two other children documented with this syndrome and they both died by the age of 20 months.
Marshall-Smith syndrome is an extremely rare condition that causes multiple anomalies (birth defects), one of which is advanced bone age. Lindsay’s bones were aging faster than her chronological age. At two months her bones were those of a three- to five-year-old child. What chance did she have to grow, let alone live? There were also distinct facial features which those children shared–large eyes, a small, underdeveloped chin, an upturned nose with a flat bridge, and a prominent forehead.
The list of birth defects was inconceivable to me as a new mother and comprehending it even more unfathomable. As the months passed, it became apparent that one of the biggest medical issues Lindsay faced was her airway. It was very narrow and producing lethargy for Lindsay. She was a noisy breather, and it was determined that she needed a tracheostomy. This decision was made when she was 13 months old and labeled a “failure to thrive” baby.
As Lindsay adjusted to this new device in her throat, I adjusted to the new routine of suctioning and clearing her airway. She spent nine weeks in the pediatric ICU where she finally began to blossom. Lindsay had an radiant smile, and it was a relief to see her so animated. Being able to breathe was the key that unlocked her potential, and we were determined that Marshall-Smith syndrome was not going to take her from us.
Every credible type of therapy became part of her new routine. At three months Lindsay was able to receive early intervention services. Physical therapy, occupational therapy, speech therapy (this did not go well because the tracheostomy kept Lindsay from making any sounds), and swim therapy. All food had to be pureed to avoid choking. Fortunately, when Lindsay was four years old, the trach was removed. We could finally hear her voice and the nice sounds she projected in order to communicate. Lindsay eventually was able to say a few words and “hey good” was her mainstay.
We then started feeding therapy so she could eat solid foods. As time progressed, Lindsay learned to ambulate with the help of a walker, which enabled her to become more independent. She navigated well for many years until her scoliosis made her feel off balance and insecure. Lindsay quickly discovered that she could use us as her walker to get to her intended destination.
Requires 24/7 Assistance
Lindsay is now 43 years old, and the tracheostomy definitely saved her life. She is believed to be the oldest person in the world with Marshall-Smith syndrome. There are about 30 other people currently known to be living with this condition and they have varying abilities. Lindsay requires 24/7 assistance with her daily living routine, and she receives great care and love from our family. But Lindsay’s world was shattered when the pandemic began, as every single thing she looked forward to ceased.
People living with developmental disabilities function best when there is structure and routine, but Lindsay’s life was upended. The residual effects crept in slowly. Soon she came to realize that we were no longer able to go to her favorite restaurants, movies, taking long walks in the mall (I would push her wheelchair as she delighted in the sights), or visit with family and friends. Even her physical therapy stopped. Every vestige of her former life was gone.
My husband and I decided that each day we would take Lindsay on long car rides. We were probably among the few people still using our cars just as much as before the pandemic. While most people were contacting their insurance companies to inform them of a change in mileage for leisure activities, we were filling up the tank regularly. Our weekly consumption was unchanged.
Living in Michigan there are many inland lakes, and we were definitely on a mission to visit them. The surrounding neighborhoods and attractive homes were stimulating, and Lindsay liked these adventures. Some days we would comment that we could have driven to Toronto with all the miles we were racking up. Many times, we would end our excursion by stopping at the grocery store. We used to like going to the Dairy Queen, but none were open anymore.
Since ice cream and cookies are one of Lindsay’s favorite treats, we had to be sure we were well stocked since merchandise was constantly flying off the shelves. Going into the market was no longer an option for Lindsay, so she would sit in the car with one of us while the other went into the store. She used to anticipate the seat belt being unbuckled and the door opening for her to be lifted into her wheelchair. Now, Lindsay had to look out the window and watch one of us disappear into the store. I know this was extremely frustrating for her.
As the weather improved this spring, we could finally walk around the neighborhood. When greeted by neighbors, naturally standing six feet apart, Lindsay could no longer reach out to hold a hand or hug anyone. Since Lindsay does not have expressive language, physical contact is a means for her to show affection. I watched with sadness as she tried to inch closer to people, as they pulled away. But nonetheless, being outside and enjoying the fresh air was uplifting.
We would either push Lindsay in her wheelchair or walk with her. Lindsay needs assistance walking and, in the evenings, she developed a routine to soothe her soul. After dinner, Lindsay would walk around the house with me or Jeffrey for about forty-five minutes to an hour. We have a perfect setup for her, which enables Lindsay to move easily from one room to another. Her path is structured like a mini track. This new, prolonged walking exercise was an outlet for my daughter. She was venting emotionally about this new routine. Lindsay had no other means to express her displeasure with the current situation and pounding the pavement, or wood floors had a calming effect.
As this routine continued for many months, Lindsay’s attitude changed, and her irritation was heard clearly. Just because Lindsay does not speak doesn’t mean she can’t vocalize her anger. At first these sounds were low and tempered, but as time moved forward, Lindsay’s irritation with this new normal mounted. She began to scream at unpredictable times. One minute she could be happy and affectionate, and then her mood would change abruptly. My hair was her main target, and she could grab it with uncanny speed and twirl it around her small hands with profound accuracy. I would attempt to talk her down from the ledge, and sometimes I was successful, and other times Lindsay was in another zone all together.
And then, as if that weren’t enough, she added in grinding her teeth. Lindsay would look at us afterward as if to say, “I know you hate this, but I’m really pissed off.” My husband Jeffrey would intervene and Lindsay paid attention to him. Typically, this stopped the craziness. The meltdowns were infrequent, until they weren’t. Interestingly, these performances, as Jeffrey and I called them, were basically reserved for me. However, Lindsay then took the show on the road. She started to slide out of her wheelchair while in motion, and she was buckled in. We could walk with her and then she would lift her legs and we had to hold her midair under her arms to keep her safe. She thought of every irritant to let us know her anger about our upside-down Covid-dominated world.
Fourteen months after the pandemic began, Lindsay was able to return to her day program. She was delighted to ride the van once again and see all the people she missed. Lindsay was definitely sick of being with us. However, these new behaviors began to creep into her daily routine at the program. They told us they had never seen her in such a state before this. The residual effects of the coronavirus, sad to say, keep marching forward. Modifying Lindsay’s disposition is a work in progress.
When the mask mandate was no longer required for entering stores, Lindsay was reintroduced to all her favorite haunts. One by one, Jeffrey and I took LIndsay back to the places she had been locked out of for so long. She was not able to wear a mask due to respiratory issues and a resulting inability to keep it on for more than five minutes. So, she was placed in double jeopardy and thus had to wait longer than most people to re-enter the land of the living.
Last February. our family decided to take a trip to Florida. Lindsay enjoyed air travel, and we were all looking forward to a relaxing trip. However, the relaxation component would only come to fruition when we were clear to fly with Lindsay unmasked. Just one more hurdle that Covid presented. The airlines were still following CDC guidelines and masks were mandatory. Lindsay could only obtain permission to fly without a mask once we had purchased our tickets, appeared at the airport on the day of travel, and were interviewed by a medical professional via the phone. This presented a major issue–what if they denied Lindsay?
I contacted Delta and made the rounds with ticketing, supervisors, managers, and then onward to the executives. They informed me that, given Lindsay’s medical history, she would most likely be permitted to fly without a mask, but they couldn’t guarantee it. I asked if they could meet with Lindsay prior to the date of our trip, of course, once we purchased the tickets. The answer was a resounding “no.” So, we had a dilemma. We could secure the tickets, pay for our house rental and roll the dice with Delta’s medical staff, or we could drive and not have to worry about this insanity. However, driving from Michigan to Florida in the winter was not ideal. We gambled and won: We purchased the tickets and were able to use them. Florida was a nice respite!
Looking back, like most people. I never could have imagined our world changing so drastically because of the pandemic. But Lindsay has ultimately thrived during this difficult passage and surpassed all the predictions that were laid at our feet so long ago. She has wonderful brothers who encourage and love her unconditionally. Her sisters-in-law, aunts, uncles, nieces, nephews and cousins all treat her with the utmost respect and understanding.
I knew when Lindsay was quite young that I had to write about all of our experiences. Even before Covid. whose spark hadn’t been ignited yet. I wrote about our family, encounters with the medical community, the school systems, societal scrutiny, and our daily triumphs and disappointments in a memoir, The View From Four Foot Two, which was published in December, 2013. But the story hasn’t ended, and Lindsay’s journey continues. This is another chapter in her story.