21 May Angela and Rowan: A Friend’s Perspective
SLC13A5 Epilepsy affects not just individuals, but friends and families as well. The following perspective, as told by Angela, TESS Superhero Rowan’s friend, 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?
My husband went to elementary school with Michael who is Rowan’s dad! We are connected to the community through our family friendship and love for Rowan!
What was your first reaction to the news about Rowan’s birth? (Before the seizures started) / What was your first reaction to the news that Rowan was having seizures?
It’s hard to separate the joy I felt for my friends from the uncertainty and fear that quickly followed when we learned that Rowan was having seizures. I am not even certain that we had received an update that he had been delivered before we were hearing of complications and tests and NICU stays. The excitement quickly turned to anxiety for our friends going through something we had never imagined.
Describe how you felt when you were first informed that SLC13A5 Epilepsy was Rowan’s diagnosis.
We had been following along with the updates that Michael was providing with his blog about Rowan. The early uncertainty was very scary, always hoping that worse news would not be coming; and so there was some sort of relief once he was diagnosed and there was a course of treatment to follow. I know how much Rowan’s parents were hoping for answers and so I remember feeling happy for them in the next step of their journey.
Since the diagnosis can you describe what a typical day looks like for Rowan?
I am fortunate enough to provide care for Rowan a few days a week! A typical day for us includes lots of play, songs, and crafts. We often take walks to the park or the library where we can all play together. Rowan is between the ages of my own two children, and they are the three best friends! We have developed a wonderful routine feeding Rowan through his feeding tube (which my own kids love learning to help with!) and we love to sing him songs and see which ones he is in the mood for!
Could you share a bit about Rowan – what does he like to do? How would you describe his personality?
Rowan is a very happy little guy! Rowan enjoys sensory bins, painting and any type of musical play! He loves when you sing him songs, when you dance for him, or when you play him instruments and help him try as well! He loves to just be included in everything we are doing while he spends time with us! Rowan also loves to swing at the park and go for walks! He is a super happy, smiley, and curious!
What do you hope Rowan’s future will look like?
I hope Rowan’s future will be happy, whatever it may look like. I know right now there is still lots of uncertainty with how much independence he may have and so I hope that he continues to learn and grow at whatever pace is best for him.
Anything else you would like to add?
I am always so proud of Rowan with every accomplishment he makes, big or small! He continues to amaze me with his determination and growth that he makes on a daily basis. My children and my family are so lucky to know him and to be his friends.