It’s impossible to comprehend the anxiety that families of medically complex and fragile children have felt since the start of the pandemic unless you ARE that family.

“COVID is just not a big deal for kids.” That’s what we’ve been told since 2020, that’s more than 2 years of gaslighting by many around us.

THIS is what getting COVID looks like for a medically complex child who is immunocompromised and has developmental and intellectual disabilities.

THIS regimen of medication is what just one positive test brings on. Antivirals, steroids, antibiotics, inhalers, pulse oximeters, constant monitoring, logging every symptom, temperature, and change in behavior.

THIS is what COVID looks like for a family that has taken every precaution possible aside from keeping their child out of school after a year of disastrous virtual (non)learning:

*An ENTIRE day of medical portal messages, phone calls, consultations with multiple doctors, and visits to the pharmacy to set up a plan of care for one child.

*Testing positive for COVID 2 days after getting the latest bivalent booster (ie not boosted soon enough for the vaccine to help)

*Testing positive for covid despite masking (not as effective if those around you do not mask)

*A tray full of prescriptions and other meds

*Weaning the child off of other important meds to prevent dangerous interactions

*Preparing to extend treatments for the month if symptoms persist

*Discussing with doctors what ER is best if the kitchen sink of meds we’re pushing doesn’t work

*Buying an extra pulse oximeter in case the current one breaks

*Crushing the 3 horse sized pills we call Paxlovid and trying multiple methods to get it down

*Dealing with ableism in medicine: being told there are no alternatives for life-saving meds for individuals who can’t tolerate certain textures and tastes

*Accepting that everyone in the home will be exposed because it’s impossible for some individuals to isolate or wear a mask

Thankfully the aggressive treatment my son’s medical team prescribed seems to be working. He is on the mend. I expect some “I told you so” responses both to my face and behind my back. But here’s what most folks don’t realize:

*There’s no way of know where he would be without this aggressive treatment.

*There is no way of knowing what might have happened without vaccines.

*There is no way of knowing what might have happened if this were a different variant.

Perhaps most alarming:

*Because of his high pain tolerance, I don’t know if he is 100% better.

*Because of his limited expressive language, I have no way of knowing if he truly is better.

*Because of communication difficulties, it will be nearly impossible for him to tell us if he’s experiencing any of the MANY symptoms of long covid. According to the Centers for Disease Control, those include:

General symptoms

  • Tiredness or fatigue that interferes with daily life
  • Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
  • Fever

Respiratory and heart symptoms

  • Difficulty breathing or shortness of breath
  • Cough
  • Chest pain
  • Fast-beating or pounding heart (also known as heart palpitations)

Neurological symptoms

  • Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
  • Headache
  • Sleep problems
  • Dizziness when you stand up (lightheadedness)
  • Pins-and-needles feelings
  • Change in smell or taste
  • Depression or anxiety

While the rest of the country celebrates “the end of the pandemic.” Many of us are still in it. Living cautiously, with near constant anxiety and worry.

To those families who are still in this, please know you’re not alone.

If you need someone to talk to, connect with us through our HELPLINE:

PHONE: (877) 567-1122