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A Pandemic and The Many Emotions of a Special Needs Mom

A Pandemic and The Many Emotions of a Special Needs Mom

Nearly four months ago, the entire world turned upside down.  Everything that was “normal” came to a screeching halt.  Since the onset of the COVID-19 global pandemic, I have found myself on a perpetual rollercoaster ride of emotions.  A never-ending series of twists, turns, tumultuous bends and hurling spirals.  Being the parent of one child with multiple disabilities and complex healthcare needs, and one teenager on the Autism spectrum, I have fortitude.  I feel that my typical daily life has helped equip me for the logistics of this and has given me endurance to weather the duration of the storm.  Staying home, avoiding crowds, and wearing a mask have not been tough to comply with; this has been the easy part.  However, throughout these strange times, I have felt the steady weight of swirling emotions.  Some days, their weight has been quite heavy.

Worry.

Worry over EVERYTHING.  The worry over my vulnerable child becoming ill can be all consuming.  For her, a cold is never JUST a cold.  I also worry that missing months of vital therapy sessions will cause her to regress.  I worry for my husband’s physical and mental health, as he works in a healthcare setting.  I worry for my teenage son who is lacking crucial face-to-face social interactions.  Worry is consistently at the forefront of my mind.

Isolation.

Not ready to venture out, or let our guard down, our family maintains little contact with those outside of our own home.  We’re just not there yet.  Close family visits us outside in our yard, keeping a safe, six-foot distance.  We turn down invitations and we stay home.  We shut out our essential outside supports and respite.  Some days, it’s hard not to feel tired and weary.  Nevertheless, we remain steadfast, knowing that every single act of sacrifice, although difficult, is worth it.  We are keeping our children safe.  Isolation that began swiftly and has carried on for months leads to stress.  It can be overwhelming; prioritizing a bit of self-care is key.

Anger.

I am bombarded daily with social media posts, often by people that I once respected, demanding that this is being blown out of proportion.  Some even calling it a “hoax.”  I read comments from those who are eased by their belief that it “ONLY affects the elderly and the vulnerable.”  As if the “ONLY” category is unimportant or less than.  I am angry.  How did our community lose its sense of compassion?  Witnessing our society downplay the seriousness of this pandemic, refusing to wear masks; it becomes hard to not find moments of anger.  I have lain in a hospital bed, holding my daughter as she seized uncontrollably from a fever, brought on by a common childhood virus.  That terrifying experience stays with me.  I am angry that my legitimate concerns for my child are minimized by others that could never understand walking in my shoes.

Sadness.

I miss hugging my parents.  I am fortunate to have them as my neighbors, but it’s painful to watch them leave my driveway, after an outside visit, without being able to hug them goodbye.  Sadness moves in when I envision my children playing with their grandparents and lovingly, closely interacting with them.  I’m sad because I long to visit my own grandmother, but due to her underlying health condition, I feel that I should continue to wait.

Gratitude.

I am grateful for my family and the love that resides in our home.  I appreciate all that we have.  I am grateful for days playing in the sunshine and all the simplicities that we once took for granted.  Extra time together has been a gift.  Front porch sitting, backyard bonfires and blowing bubbles on the lawn have become cherished pastimes.  Finding joy in troublesome times keeps us hanging on.  Knowing that we will continue wading our way through these obscure waters together generates a most profound sense of gratitude.

Hope.

I am hopeful that this will not last forever.  I sincerely hope that many of us will emerge stronger and more compassionate once this is all over.  Surely, there are other parents out there that must be reeling from many of these same emotions.  I am hopeful for them, too.  I look forward to embracing my parents, seeing friends and loved ones, and someday returning to our own version of normalcy.  Until then, I will continue to take this process day by day, breathe through all the emotions, and tightly hold onto hope.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

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