Rob, Julie, and Rowan: A Grandparents’ Perspective – Part Two

Rob, Julie, and Rowan: A Grandparents’ Perspective – Part Two

SLC13A5 Epilepsy affects not just individuals, but entire families. The following perspective, as told by Julie, TESS Superhero Rowan’s grandma, 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?

Our grandson, Rowan, was born with this rare genetic disorder which launched our journey onto the great learning curve which is SLC13A5.

What was your first reaction/thought to the news about Rowan’s birth (before the seizures started)?

I was thrilled to hear of Rowan’s birth, so happy for Michael and Amber, and looked forward to meeting the newest member of our family.  Rowan was born the day of my father’s funeral, so there was a strong feeling of the circle of life.

What was your first reaction/thought to the news that Rowan was having seizures?

When we got the news that Rowan was at McMaster hospital because of his seizures, I admit I broke down in tears, prayed and ‘told’ my dad to do what he could.  I was still at my Mom’s place and it was a difficult time.  Of course, we knew that Rowan would be getting the best care at McMaster and we hoped for the best.

Describe how you felt when you were first informed that SLC13A5 Epilepsy was Rowan’s diagnosis.

When I heard the diagnosis there were, of course, mixed emotions: relief to know that the disorder was identified, uncertainty about what it really meant, apprehension about how Amber and Michael and our family would handle what the future holds for us. And confident hope that we could work our way through whatever was in store.

Could you share a bit about Rowan – what does he like to do? How would you describe his personality? 

Rowan is fun and a puzzle.  He, of course, is like no child I’ve ever known. The more I get to know him, as with any child, the more I can see what he prefers to do.  He likes people goofing around with him, reading to him, taking him out or carrying/snuggling/dancing with him.  He really likes certain people which he shows by becoming very animated when he’s with them, and others he’ll ignore.  I can’t tell what the common denominator is in the people-preferences.  He enjoys music, lights and sounds, especially loud sounds. When he has the energy, he’s persistent in getting the job done (knocking over that tower or rolling over, etc).  Rowan is not a complainer.  He’s happy for the most part and it’s easy to tell when things are too much for him. That’s a little sad to see.  He seems to understand a lot, but maybe I just prefer to believe that every young child does.

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

Of course I hope that Rowan’s future is bright.  Already he’s part of the great investigation that will help navigate his own (and others) course through this disorder.  He has a whole team of people helping and rooting for him each step of the way.  I hope he and his parents continue to have the support they need, whatever that looks like.  I hope I get better at understanding him, knowing how to better help him, and have less of a fear of what to do/how to recognize a seizure, but for now we’ll take it slow and just hang out together when we can, so we get to know each other better and just keep on loving each other.

Anything else you would like to add?

Rowan is definitely making us more aware than ever of the barriers in society and ever mindful of the ways we can support him and others.  As a library tech in an elementary school, I have become more attentive to the ways I can support the students with disabilities in the school even by ensuring that the books I purchase depict as great a variety as possible of abilities, talents and ways of showing helpfulness and kindness to others. It’s a small thing but I hope I am creating awareness and presenting it as a normal life.

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