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The New Normal

The New Normal

As August comes to an end we are starting to embark upon a new part of our journey through this strange year.

We have spent much of the last few months in isolation. Avoiding stores, restaurants, and even friends and family in an attempt to do anything we can to offer another layer of protection to our medically fragile child. We are now reaching the point where decisions must be made. Remaining to the greater extent in quarantine or resuming our face to face therapies and services.

Every time I feel like I come to terms with my fears amidst this pandemic another layer of anxiety seems to present itself. There does not seem to be an end in sight. In the early days of this, I assumed this would be a fleeting thing. That we would be vigilant until it passed, and then resume our lives as we knew it. I was terribly wrong. Now months into it things only seem to have gotten worse in my location. Meanwhile, time also passes without the therapies that have become such a vital part of our daughter’s life.

It is difficult to imagine venturing back into the world knowing how many people are blatantly not taking precautions to protect children like mine.

I have seen so many people complain about the simplest amount of measures to slow the spread of this deadly virus, even to the extent of boycotting businesses that are prioritizing safety. I know they look at children like mine as a statistic, but unfortunately, I do not have the luxury of minimizing this as it is a real threat to families like mine. When I express my fears for my daughter’s safety though, I am often met with hostility and condescension. This experience has really opened my eyes to not only the lack of empathy and compassion from strangers, but also from people from within my inner circle. It has been disheartening to say the least.

I feel at odds with myself between wanting to keep her in the secure bubble of our home, while at the same time I have an immense amount of trepidation about the long term damage not seeing her regular therapy team can be having on her body. The fear of regression is ever present in my mind. We have been very fortunate to have Zoom therapies to help bridge the gap, but nothing compares to having a trained professional working hands-on with her.

Ultimately, we have decided to resume most in person therapies, with a high level of precaution taken.

It was not a decision that was easy to make, but I feel as though it is in her best interest. That being said, it’s hard to quell the anxieties this year has brought me, but I am reassured by the level of care and thoughtfulness our team has always provided us. I can’t pretend this is not unnerving for us, but I remain optimistic that this will be a small step into the new normal that is our life.

Firefly Blog

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

Sarah Kirkpatrick

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My name is Sarah Kirkpatrick. I am a hair stylist from Alabama. I have one amazing daughter who has quad cerebral, dystonia, and HIE. I love all things art, music and cats.

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