The other day, I got a lovely photo card from my neighbors, the Browns. It was sort of like those family-photo Christmas cards that people send, only this one was to remind us that May is Pediatric Stroke Awareness Month. Not something you’d probably think about unless you or someone close to you has been affected by a pediatric stroke.
Knowing some of what my friend Susan Brown has gone through with her son JT (along with her husband Aaron and their younger daughter Caitlin), I thought it might be nice to have her share her experience with you. Here’s her story. — Susan
Since my birthday is May 1st, I have always had something to celebrate during the month of May.
On May 5, 2007, my husband, Aaron, co-hosted a Cinco de Mayo Surprise Party to celebrate to my 30th birthday.
Eight days later, I celebrated my first Mother’s Day when my son, JT, was 6 months old.
On May 28, Aaron, JT and I moved from our Cape Cod in the city (Oakley) to our colonial in the suburbs (West Chester).
On May 31, the month-long celebration was over. As I sat with JT at the pediatrician’s office, I tried to explain to the doctor that something was wrong with JT’s right arm. I didn’t think his arm was broken, but I knew it wasn’t right. If his pacifier was next to his right hand, he would reach across his body and pick it up with this left hand. His right hand was in a fist more than his left hand. When he rolled to the left side, his right arm would get stuck.
The doctor gave us three referrals and we spent June and July of 2007 at various appointments: occupational therapy (OT) evaluation, physical therapy (PT) evaluation and neurology. We started Early Intervention/Help Me Grow services through our county and attend weekly OT and PT appointments.
In July, we attended an appointment at the Brachial Plexus Clinic at Cincinnati Children’s Hospital. My husband and I were hoping we would get some answers at this appointment, and we did. We were both shocked when the doctor told us that she suspected that JT had a stroke.
On July 20, the doctor’s suspicions were confirmed when an MRI revealed that JT had suffered massive a left hemisphere in utero stroke.
The last five years have definitely been a journey. We have been so fortunate to meet so many caring individuals on the way–occupational therapists, physical therapists, speech-language pathologists, doctors, teachers and teaching assistants–that have had a profound impact on JT’s life. We are so proud of JT’s determination and perseverance.
We now have some thing new to celebrate during the month of May: May is Pediatric Stroke Awareness Month.
— Susan Brown
Childhood stroke occurs in approximately 1 in 2,700 infants and 11 in 100,000 children (ages 1 month to 19 years) each year. Children frequently have significant long-term disabilities after a perinatal stroke, including cognitive and sensory impairments, epilepsy, visual and behavioral difficulties, and cerebral palsy. Early identification and treatment is key to success for little stroke survivors.
How can you help?
Volunteer, Donate, Advocate: The Children’s Hemiplegia and Stroke Association, is a 501(c)(3) non-profit organization, dedicated to improving the quality of life for children and families affected by infant and childhood stroke.
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I am touched by the beautiful letter from Susan. I have had the great joy to know Susan, professionally, for many years now. I have also been lucky enough to see J.T. (and Caitlin) growing up–what beautiful children they are! J.T. is energetic, smart, creative, curious, fun…..the list goes on and on. I applaud Susan and Aaron’s determination to help J.T. achieve and succeed like any other child–nothing is going to stop him from being the best! Thank you for increasing my awareness of pediatric strokes.
Thanks for chiming in, Judy. I was happy to publish Susan’s story. I hope inspires other families out there who are affected by pediatric stroke — and helps all of us be more aware of this health issue.
Although I see the Brown family almost every day, I was still moved to tears reading this blog. First of all, because I get to see the determination and smiling face JT displays every day. Secondly, because of what awesome parents Susan and Aaron are. It’s not just that JT had a stroke, it’s the hours and days of committment for therapies by professionals as well as everything Aaron and Susan do on their own every day. Thirdly, that I have such wonderful neighbors/friends, like Susan Jackson who posted this on her blog.
Mwah! Love having great neighbors. I’m the lucky one.
I also work with Susan and have known her since before JT was born. She and Aaron continue to be wonderful parents and support JT to be the best he can be. Thanks, Susan and Aaron, for going the extra mile to help us all understand how a pediatric stroke can change a life and make a family stronger! And thanks for sharing so many great stories of JT’s successes (and Caitlyn’s, of course). I look forward to many more!
While I don’t know Susan personally her posts are always so honest and poignant. I was truly moved by this post and her positive, we-can-do-this, celebratory attitude. Thank you Susan for your openness and willingness to share your insights and strength.
Rosanne, thank you. This particular post was written by another Susan, my neighbor — but I appreciate your comment just the same!