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We Made the Right Decision, Didn’t We?

Jodi Shenal by Jodi Shenal Additional Needs

Jodi Shenal

Jodi Shenal

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 disabil...

If someone would have told me in February that our “normal” life would soon come to a halt and that a virtual school program was in my daughter’s future, I would have thought the notion was preposterous. 

Unbelievable.  Inconceivable.  Yet, here we are. 

Parents of children with disabilities are anything but novices when it comes to making tough decisions. 

This is something we are constantly and consistently faced with.  However, this year, we’ve crash landed in brand new territory. 

We’ve been tasked with making unfathomable decisions, while in the midst of a pandemic. 

We have impossible choices to make and some of us question ourselves nonstop.  We ask ourselves repeatedly if we have chosen wisely. 

Having a daughter with multiple disabilities and learning differences, choosing a completely virtual model for this school semester was a strange call for our family to make. 

She loves her school and adores her teacher and her classmates. 

However, she also has complex medical needs.  Flu season is scary enough for us; respiratory infections are extra difficult for her to fight off. 

Fever notoriously brings terrifying seizures.  Our son has been enrolled in a virtual school program for the last six years.

He is a successful, independent learner and enjoys working at his own pace. 

Even though this is not the case for our daughter, and she requires one-on-one direction, for the sake of her health and safety, we chose to keep her home.

We made the right decision, didn’t we?

While she was thriving at home and we settled into our new routine, we missed our vital therapies.  OT, PT, Speech, Feeding and Aquatic therapies were all key parts of our busy life before this abrupt change. 

Despite our worries of regression, we continued to keep her home, away from all that she was accustomed to. 

We made the right decision, didn’t we? 

No matter how many times I deliberated with myself, in my heart, the answer obviously was always YES.

The health and safety of our vulnerable child was first and foremost. 

Even though we were diligently working with her at home, there was always a sliver of worry; we didn’t want her to lose the valuable skills that she had worked so hard to attain. 

After six months of being without our in-person therapies and supports, we made the arduous decision to start back with some limited face-to-face visits. 

The first time I dropped her off at the door for Physical Therapy and watched her being pushed in her wheelchair by someone other than myself or her Dad, it hit hard. 

Tears stung my eyes as I walked away. 

Although I was thankful for all the safety procedures set in place, and I trusted that she was in good hands, it was so difficult to leave her. 

We were no longer covered in the security of our safe, comfortable bubble at home. 

My child had been safely glued to my side for the last six months.  I had tormented myself with uncertainty before that first session. 

As I waited on her, my eyes were fixated on the therapy room door, watching for her to emerge. 

I sat in my car as the minutes ticked by, at a snail’s pace.  I called my husband, and I asked him,

“We made the right decision, didn’t we?”

In the months following, we have slowly added a few more in-person therapies back into our routine. 

We’ve even transitioned from Telehealth to many necessary face-to-face doctor’s appointments. 

Every single time we venture out into the world, after shielding for so long, I hold my breath and wonder if we’re doing the right thing; if we have in fact made the right decision. 

Witnessing the excitement on her face as she sees familiar people she’s missed and watching her easily bounce back into the swing of her old life, it feels right. 

We exercise an abundance of caution in everything we do.  We do not live in fear, but we are extra meticulous in the precautions we take. 

In time, we are optimistic that we will be able to fully return to our “normal” life.  Until then, we remain vigilant. 

We continue to be extremely selective with the activities our family engages in, using careful consideration. 

For now, we assess each situation, hold tight to hope, and do our part to help things get better.  It must get better. 

We ALL wish to return to some semblance of what life was like before this. 

We reserve the right to question ourselves and our decisions at every juncture, and to change course if necessary.  

For now, we stand firm and believe that we made the right decision…the decision that’s right for US.

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