This is Brendon. Before Brendon was born he suffered a STROKE. It is important for us to share his story so we can raise awareness that CHILDREN can suffer a STROKE. Please share Brendon's story to help in our mission. Brendon's Smile...Raising Awareness for Childhood Stroke Foundation was created to raise awareness and educate EVERYONE about stroke in children. For more information visit www.BrendonsSmile.org.
Brendon was born a SURVIVOR and we are so blessed to have him in our lives.
At 19 months of age Brendon was diagnosed as having suffered a stroke while in utero. As a result of the stroke he has been diagnosed with Cerebral Palsy, Right Hemiparesis, Muscular Scoliosis, Speech Apraxia and Aphasia. Brendon currently wears braces on both feet and a splint on his right hand. Brendon is two years old and is only able to say a few words. He struggles with his inablility to vocalize and gets very frustrated with himself. He tries with everything he has to tell the people he loves what he is thinking. Brendon has a gorgeous smile and spirit that you can see by looking into his eyes. Through all of his frustration he manages to keep on smiling. Ask any one who knows him...he lights up a room. His spirit keeps us going!
It's important for every parent to know that doctors may not recognize the symptoms of stroke in children. Brendon should have been diagnosed much earlier than when he was. As a new mother I was told I was overly "paranoid." Due to lack of a diagnosis by several doctors and specialists Brendon was deinied the treatment he so much deserves.
You are invited to share Brendon's journey with us.
It is my goal to share with you every step of Brendon's journey so you understand what it is like to advocate for a child you love and to raise awareness. I don't want another child to be denied what is their's!
Please e-mail us at BrendonsSmile@yahoo.com for any suggestions you may have on helping us spread the word.
Jessica & Stephen Spear
What a Whirlwind of the Past Week and a Half…
Mar 8, 2014 9:59pm
What a Whirlwind of the Past Week and a Half…
Nothing like being on crutches longer than anticipated duringa most crazy winter where we there is no lack for snow and ice. When I scheduled surgery on my right foot Ihad in the back of my mind, No problem;this one is going to be much easier than the last one. (In full disclosure,the last one, in November on my left foot, went very smoothly and I was doingplanks, pushups, and jogging after two months. I had two corrections on that foot.)
Well I was W-R-O-N-G!
Surgery was scheduled on the 5th of February. A brief trip down to Fairfield, Texas wasscheduled at the end of the month, February 28th. That should leave PLENTY of time in between do everything necessary to keep up with the duties of maintaining a household, a family, a foundation and pack up for the trip. Oh, and throw in the fact that my husband, Stephen, started a newbusiness which requires being away from the family at times when he is usually home. All of these wonderful andimportant happenings occurring; however,none of them have been easy.
Just to make it all a little more interesting my body reacts to the stress of it all by having nasty migraines that, basically, force me into a complete halt for at least 8 hours and leaving me completely depleted of energy and brain functioning for days –in this case weeks with back-to-back migraines. (I literally forgot the name of a friend of mine one day - what theheck?!)
So a week ago Thursday (February 27th), the Spear family rented a vehicle and packed up, grabbed a set of grandparents and headed south for the weekend.
I hadn’t yet mentioned the reason for heading to a small town southeast of Dallas-Fort Worth Texas. Why else would the Spear family do such a thing? For those who are familiar with me would immediately assume it has something to do with Pediatric Stroke Awareness. That assumption is full-on accurate! We made the trek and turned it into an adventure! We went to show support for the Ward family of Fairfield, Texas. They have been deeply impacted by stroke in a child. Alex Ward, the youngest child of the family, endured a stroke around the time of his birth. He is turning 7 next week.
Alex’s Mom, Jennifer, and I have become friends over the years. We would have never crossed paths if it weren’t for the fact that we have both been impacted by pediatric stroke. Jenn was one of the moms whobecame my lifeline during a time when I was trying to figure out how to help mychild. She and some of the other moms, Ihappened to meet via Caringbridge, were a godsend in a time where no one else understood.
For the past six Brendon’s Smile Rally/Walks to Raise Awareness for Childhood Stroke events, the Wards and/or their extended family have come up to St. Louis to show support. With that being said, where else would theSpear family be on March 1, 2014 for the 1st Annual Righty Run to benefit Alex Ward, along with a portion of the proceeds going to Brendon’s Smile and ANE Foundation.
We made it there and had a WONDERFUL time in Texas with our friends. Also, it was awesome to spend time with my brother, Mike, and his oldest daughter (my niece) who were able to travel up from San Antonio, Texas – where they currently reside. (My sister-in-law and youngest niece weren’table to make it although they had intended on doing so. The flu kept them from making the trip.)
After a very busy weekend we said our goodbyes and set out to make our trek back home for a busy week involving our work with Pediatric Stroke - the center of our focus - in St. Louis. It was Sunday morning and a winter stormnamed “Titan” (how apropos!) was about to rip through our entire path home. We made it about 3 hours north of Fairfield,just on the Texas side of the border into Oklahoma. Yeah,I pretty much will admit that I was terrified about our safety and worried asto whether we would make it off of the highway. God (yes, I went there) guided us safely offthe ice-filled highway to a nice place to hang out until we could get backsafely on our way. (And, I have to give a shout-out to Stephen’s expert drivingskills!) We were able to leave Mondaymorning and made it home around 7:30 that evening.
Adelyn, by now, has had enough of being schlepped (another word so apropos – love my Jewish friends!) around for the past six months and is quite ready for a routine. Brendon went to school on Tuesday. Addie and I worked on trying to get our home back to normal after I had been out of commission for the previous four weeks. We made some headway. Oh, and we got our dog back from his resortwhere he, too, had an unexpected extended stay.
Wednesday brought us to the long awaited meeting with Dr.Heather Fullerton. Every year the Spear family gathers with the guest lecturer for Annual Brendon’s Smile Lecture at the Washington University School of Medicine. We meet at a dinner reception to welcome the lecturer and speak with other guests who happen to be amazing physicians from the departments that are all impacted by strokes in children at the St. Louis Children’s Hospital.
Dr. Fullerton spent three days at the Washington University School of Medicine and the St. Louis Children’s Hospital where she consulted physicians in regards to her expert knowledge about strokes in children.
Friday morning was the 5th Annual Brendon’s Smile Lecture which I always attend. It was a “packed house”. Basically, 250 brilliant minds that specialize in pediatrics, neurology, hematology… were gathered for the lecture. After the lecture I met with several people to discuss the impact this lectureship has on pediatric stroke. It was noon by the time Adelyn (who wasawesome throughout the entire lecture) and I returned home where I had a HUGE adrenalinedump!
The feeling of empowerment is incredible. To go from completely powerless to totally empowered is incredible. Brendon has inspired such a powerful movement to help the masses and encourage learning to help other children like him!
I am blessed!
Going back to Monday, February 24th, in regards to my healing foot, I was given the permission to start weaning off of the crutches over the next few weeks. After aconversation that about drove my doctor nuts because he was dealing with me –the “I can’t sit still, how long is this going to keep me down?” person that Iam – I learned that I should take it slow, wean off the crutches, yet theweight bearing wouldn’t cause me harm as long as I took it slow. My doctor tends to look at me and shake hishead a lot. Sometimes there is an eyeroll. So by Tuesday morning I hadthanked the crutches for their service and bid them farewell!
I am still wearing a LARGE boot that is rather Herman Munster-esse (as in Frankenstein – if you don’t get it then google it!). It is my dream that I can retire this boot that has carried me through two surgeries and over ten weeks of service on Tuesday for my follow-up appointment. Iwant to wear a tennis shoe so I can move easier!
And there it is – a Whirlwind of a Past Week and a Half! ;)
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Stephen & Jessica Spear
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