My Covid Story
2020 was a year like no other. 2020 started out January 1st as any other New Year, day one. Full of hope, promise, dreams to come true. March 2020 is when the shit hit the fan.
I recall trying to follow news outlets full of conflicting information trying to make decisions for my family. What is happening? What do I do? My life was busy, hectic, chaotic at times.
My sixteen year old daughter was working part time at Kohl's. Her managers loved her work ethic and were training her to become whatever she wanted to be within the corporation. Offering her an internship over the summer at their University in Milwaukee, Wisconsin. She graduated high school a year early and was waiting for an early entrance placement for college in the fall. An internship would be an amazing opportunity. Her largest decision was to decide to pursue a career in fashion merchandising, fashion design, management or merchandise buyer. As any other teenager she was anxiously awaiting her boyfriends graduation ceremony and senior prom in June. She was done with high school and would not have these opportunities with her own class making her extra excited for his high school milestone moments. These days would never arrive as the world arrived at a stand still. No internship, no graduation ceremony, no senior prom, no college early entry program.
My two year old son is special needs, autistic, non verbal. He had therapies at our local children's hospital three times per week for occupational therapy, feeding therapy and speech therapy. All of these services abruptly arrived at a halt.
My twenty one year old son had a new baby. My grandson was seven months old. I took care of my grandson five days per week as his parents worked full time. He had an amazing nanny who loved spending time with him for three hours per day as I juggled therapy sessions with my youngest son. He was thriving, happy, healthy, loving his baby life. That all ended as his mom was laid off from her job due to the pandemic and we could no longer allow outside help in our home. Pandemic? How in the world is a pandemic happening in the United States of America? What do we do now?
My special needs eleven year old son, also autistic, loves his once a week trip to the special needs kids gym. Where he could socialize with kids going through the same challenges as he is. He also enjoys reading. This child reads three generously sized books per week. Visiting the library on a weekly basis to stock pile books was his happy place. Again, these activities arrived at a screeching halt.
I am not going to go into great pandemic detail as we are entering year two of the situation and we are all living it in real time. We know exactly what a shit show has transpired from March of 2020 to present day with no end in view.
Fast forward to August 15th when I received a phone call from my daughter whom was at work at the time. She received the news from her manager that nobody wants to hear. She was exposed to covid 19 at work. A few days prior a coworker tested positive for the virus. They did not send her home to immediately be tested. She was to finish out her shift and go on business as usual. No testing required or recommended. Simply go on about your day. That protocol did not sit well with me. Of course we are getting a covid test and quarantining until we have the results. Two days later I received the phone call stating she tested positive for covid 19 and my entire family must quarantine and not leave our home for fourteen days AND until she tests negative.
A long twenty five days passed before my daughter tested negative. Many emergency room trips later and many sleepless worry filled nights. We were finally out of the woods. She was negative. Life would return to normal or the new normal or the 2020 pandemic version of normalcy.
For some crazy unexplainable reason I allowed her to return to work. She had a pulmonologist and cardiologist appointment scheduled in a few days to be certain she was in fact healthy. Two days later she tested positive for covid 19. One of two things happened. She was exposed again at work within the two days she worked or she received a false negative test. We can not be 100% certain of which occurred as both are 100% possible.
We have now entered month six of covid fueling our life. My daughter was diagnosed in October as a covid long hauler. A covid long hauler is someone that "recovers" from covid 19 but experience health complications due to the virus. She is experiencing dizziness, fatigue, lung issues causing breathing difficulties. swollen muscles around her heart, high blood pressure, temperature regulation issues, loss of smell, loss of taste, muscle soreness, muscle spasms, wheezing, memory loss, reduced cognitive function, migraines and the list goes on. We are one of the lucky families as three of her coworkers that were diagnosed at the same time as her have sadly passed away in the hospital due to covid 19. Her health care team is not certain these health complications will ever go away as not one single person diagnosed a covid long hauler has recovered to date. Our fear is she will experience these health complications for the rest of her life at only seventeen years of age.
Kohl's has denied her workers compensation even though she contracted covid at work. Kohl's has also terminated her employment stating they will not honor her medical leave letter provided by her physicians. She needs to either return to work or be terminated. Her physician team all agree that she is not able to work at this time. Kohl's made the decision to terminate her in November.
Her physicians have referred her to a covid recovery center to battle all of the health complications but, unfortunately, New Jersey does not have a pediatric covid recovery center. They will not accept her until she turns 18 in July. I tried to obtain placement in a pediatric recovery center in a nearby state however, it is beyond costly and not financially feasible. I am doing my part under advisement of her medical team to provide care for her at home.
I started a fundraiser for her medical expenses through the donate button located on the top of my website. We ask everyone to share our story, send us thoughts, send us prayers and positive energy.
This is the reason we are taking covid beyond seriously and staying home. My heart goes out to every family in the world touched by covid. It is mentally draining, financially draining and physically draining caring for a covid patient. Be safe, stay home, wear a real mask not a piece of fabric if anything at all, social distance and sanitize everything, every time.
Wishing everyone a happy, healthy 2021!