spinal muscular atrophy writer

Liz B.

Mom

Disaster preparedness: how to thrive

I like to think that between my husband and I, we have already experienced our fair share of earthquakes after Northridge and Loma Prieta. Unfortunately, we all know the saying “three’s a charm,” and living in South California comes with its tradeoffs. For all our sunshine, warm weather, and beaches, we face the constant threat of earthquakes, fires, and floods.

06/2018

2017 was a record year for devastating natural disasters─from bomb cyclones and hurricanes, to fires and mud slides. Being prepared is no longer an option; it is a necessity. This sudden realization had me clamoring to enroll and receive my certificate in disaster preparedness. I discovered that to thrive during a natural disaster, one must be empowered with a positive attitude. To do this, one needs to be prepared.

As parents/caregivers of children with SMA, being prepared and maintaining a positive attitude is our mantra. We prepare meals that meet dietary restrictions and special needs for our kiddos, documentation and rebuttals for IEP meetings and insurance denials, medical equipment and assistive technology for school, paperwork and scheduling for doctors/therapy appointments, complex calendars which encompass PT, OT, respiratory therapy, homework, extracurriculars, playdates, sports─all while keeping our sanity. This does not even include the planning and preparation that goes into our jobs (if we work) and the childcare arrangements behind that. Every day, in our unpredictable world, we plan meticulous details right down to our backup plans A, B, C through X, Y, Z. But how many of you say that you are prepared should a natural disaster strike─a disaster that leaves you and your family without water, power, food, medicine (and possibly each other, if it is the middle of the day)?

If you are like me, you are probably thinking, “I purchased a disaster kit for my family down at my local hardware store, so I’m all set.” If you have done this, then you are at least better prepared than half of our fellow Americans. However, I have a few questions: Have you ever looked inside your kit? Do you know what it contains and why? Have you checked the expiration dates within the last 6 months? Have you talked to your family about an evacuation plan or a place to meet if you are separated? Do you have pets, an infant, and what about your child(ren) with SMA? Do you have a backup power source, extra medical supplies/prescriptions, and enough food and water to meet their dietary needs?

A disaster is defined as “an event that overwhelms all available resources.” This means EMTs, the fire department, and your local hospitals will be unavailable, and you may need to be self-sufficient for 3-7 days. We are already overwhelmed every day by the challenges we face as caregivers of a child with SMA. Taking the time to really prepare is critical and one that the entire family should be a part of. The idea is daunting in our already hectic lives, and let’s face it, just thinking of such a disaster is terrifying, so the easiest path is often avoidance.

The key is taking the time and extra steps to insure you are ready in the event of a disaster. Things like having a well-stocked emergency kit and “go bag” with water, snacks, and clothing for each family member. Making copies of important documents such as medical records, insurance cards, passports, and social security cards. Charging powerchairs at night along with any other equipment that may need it and having a backup power supply, particularly if your child uses a bi-PAP.

Finally, the most essential element of your plan is a positive attitude. You are prepared, you are strong, and you will not only survive, you will thrive. Happy preparing!

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