29 Sep Rob, Julie, and Rowan: A Grandparents’ Perspective – Part One
SLC13A5 Epilepsy affects not just individuals, but entire families. The following perspective, as told by Rob, TESS Superhero Rowan’s grandfather, 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 has been diagnosed with SLC13A5 Epilepsy. I think it is important that we know about this disorder, so I have connected where I can with TESS.
What was your first reaction/thought to the news about Rowan’s birth (before the seizures started)?
A new baby in the family. Wahoo!! Such wonderful news from and for our son and daughter-in-law. We have much to celebrate with a little boy to carry on the family name. I was cycling that day, on the Guelph to Goderich Rail Trail, and was so excited to hear the news. Cell service was intermittent and spotty, so the next call was with some disturbing news about him being taken to McMaster because of some seizures. Then intermittent service again. Oh no!
What was your first reaction/thought to the news that Rowan was having seizures?
Oh no! What could I do to help? I prayed while I cycled. I bargained with God, trying to negotiate positive news about his health. What could I/we do to help? I felt and was helpless. Needed to get back to better cell service. I needed to be done this darned bike ride!
Describe how you felt when you were first informed that SLC13A5 Epilepsy was Rowan’s diagnosis.
The diagnosis was a bit further ‘down the line’ but we knew he was a sick baby. What did the diagnosis mean? What was his future? Would he walk; talk; go to school; grow up; enjoy a relationship with a special person? What could I/we do to help? This was a long-term scenario… together with his Mom and Dad and his extended family, we would support him. How… I wasn’t sure… but I knew I wanted to raise awareness about SLC13A5 Epilepsy and that is what I have tried to do outside our home and in my workplace.
Could you share a bit about Rowan – what does he like to do? How would you describe his personality?
Rowan is a happy child. I have rarely heard him cry (either he doesn’t do it much or I’m not there when he does). His smile is infectious! He loves being cuddled by his parents and his Grandma. I still feel a bit uncertain when holding him. Am I doing it right? Should I hold him a different way? And then I see how his Mom and Dad hold/treat him, and I wish I could do the same.
What do you hope Rowan’s future will look like?
This scares me immensely because I don’t know what his future holds. I would love for him to walk, talk, go to school, drive a car, do something he loves to do, meet someone he loves. Will he be able to? I just don’t know, but I do know I will love him to bits until I’m no longer around. Will research hold a cure? Can we do something as grandparents for him? How can we leave this world so that he has the best of everything? I just don’t know. I feel helpless.
Anything else you would like to add?
I am so grateful for folks who are supporting Rowan’s parents, within the SLC13A5 community, and our friends and family. I watch his parents Amber and Michael who are absolute rock stars with him and all that his disorder entails each and every day. I just don’t know how they do it. But I absolutely cherish their steadfastness, love, outlook for Rowan and tenacity in dealing with whatever Rowan’s day holds or where it takes them (Fergus Hospital, Hamilton, London, elsewhere). I also appreciate that they have continued to be special people in their own right and love each other and do their own thing as humanly possible.