Laura and Meredith: A Nurse’s Perspective

Laura and Meredith: A Nurse’s Perspective

SLC13A5 Epilepsy affects not just individuals, but friends and families as well. The following perspective, as told by Laura, TESS Superhero Meredith’s nurse, aims to give insight into what it might be like to love and care for someone with SLC13A5 Epilepsy:

Can you tell us how you are connected to the SLC13A5 Epilepsy community?

TESS Superhero Meredith and her family are my connection to this community. I am Meredith’s nurse.

Tell us about your work. Why did you pick this as a career?

I have worked mostly in home care since getting my license many years ago. I have truly enjoyed getting to know my patients and their families in a very special way, being able to offer support and care in their homes, and developing relationships with the families over time.

Why are you motivated / what inspires you to do the work you’re doing?

That is simple to answer — I get to spend my days with a truly unique little girl who enjoys going to school. Having a truly special place in Meredith’s life keeps me focused on being positive and present and enjoying life despite the challenges we are faced with.

Could you share a bit about Meredith – what does she like to do? How would you describe her personality?

Meredith has an amazing personality from being extremely outgoing to very shy when least expected. She is a curious and persistent, very, very smart little girl who never forgets things, and is always ready to smile and have fun!!

Can you describe what a typical day looks like for Meredith when you are with her?

We usually start our day by meeting a friend or two in the lobby after Mom drops her off. Mer loves to ride the elevator with her friends whenever we can. Our day includes everything from morning circle to math lessons to reading/writing skills to music class and, of course, various therapies that are essential for her to continue to thrive in many ways. Meredith even has weekly quizzes in kindergarten and she usually does very well on them, but sometimes Mer just wants to have fun!! Meredith’s therapies include PT, OT, and speech therapy as part of her regular schedule.

Meredith has grown in so many ways — being able to see her progress has been truly impressive. She drives a power wheelchair and has gotten so good at it that we are almost ready to use it outside of her regular therapy sessions. Meredith uses a “talker” to communicate quite efficiently but has other ways of letting me know what she wants too.

Meredith’s favorite time of day is recess! Like most kindergarteners, she loves to join in a game of tag or spin on the Merry-Go-Round or hang out on the rocker all the while trying to get as many friends to join us. I think Meredith loves being at school so much because it is where she can be herself and also have experiences like so many others despite her medical concerns that must always be monitored so closely.

What do you hope Meredith’s future will look like?

My hope for Meredith’s future is to continue helping and supporting her at school and trying to find balance despite the many challenges she is faced with.

 

Would you like to make a donation in honor of Meredith?

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