Something I do not often talk about is the fact that our son experienced a stroke before birth--and for completely unknown reasons. Being aware that children and even unborn babies can have strokes can help these survivors get the early help that they need.
My son Austin is a pediatric stroke survivor--but stroke does not define him. He loves hiking, birding, geocaching, travel, and many other things! If you or someone you know has experienced a stroke while an infant or child, just wait! God is going to do amazing things in their life!
Two years ago, in honor of May being Pediatric Stroke Awareness month, I asked Austin to make up a short video giving his perspective as a survivor. The facts he shares are just as true and current today, so I thought I would share this video again here. I hope you enjoy hearing his perspective! And please help spread awareness that kids have strokes too!
If you have been around my blog for any length of time, I am sure at one time or another I have probably mentioned that our son Austin has a disability. What many people do not know--even people who know us in "real life" for years and years--is that Austin had a stroke before he was born.
Yes, you read that right. In utero. A stroke. And it wasn't from an event such as being in a car accident or anything that one could explain. I had the absolutely perfect pregnancy--no problems at all. No problems, that is, until Austin suddenly arrived two months early.
Even with being born premature, after weeks and weeks in the pediatric intensive care unit, we thought we were "done" and went home to live a normal life. Wrong! Even with adjusting for milestones and accounting for Austin's "adjusted" age as doctors do for babies born premature, it started becoming obvious that Austin was not doing things that babies should start doing. Things like rolling over, sitting up, and walking.
It was then that a brain MRI revealed what none of us knew up to that point--Austin had experienced a stroke. A large stroke. Based upon the scaring and other things he could see on the MRI, the pediatric neurologist identified it as having happened around month three of pregnancy.
Thus began our journey.
With May being Pediatric Stroke Awareness month, I asked Austin if he would be willing to make up a short video sharing his perspective on growing up as a stroke survivor. He had a bit of free time today, and the video above is the result of his project.
I hope this video will help as many people as possible to realize that babies and children can have strokes too--and that if YOU ever meet a family who has a pediatric stroke survivor, please tell them about www.chasa.org
For anyone who knows me personally, you are probably already aware that our son was born with a disability. What some may not know, is that his disability is a result of him having a stroke before he was born. Yes, you read that correctly. Kids have strokes too. In fact, babies have strokes. Unborn babies have strokes. Teens have strokes. And unlike an adult who may recover a large share of what they "lost" from a stroke, when a child has a stroke, recovery is a lifetime. And they will never ever be as a child who did not experience a stroke.
Even when a family has excellent medical insurance, as we did, it is never enough to meet the ongoing needs of a disabled child. Insurance limits often mean your child goes without a needed brace because you have already used up your durable medical equipment insurance dollars for that insurance year. P.T., O.T., and Speech therapy often have limits of perhaps 15 sessions per year. How does one fit that with a child who requires all these therapies two times each per week? And what about co-pays? Our family was fortunate--most of the time, our co-pays for therapy were "only" $20 per visit. But when your child is needing six therapy visits per week, four weeks per month, twelve months per year, times around twelve or eighteen years or so, well, I guess you get the picture. Even excellent health insurance is not enough.
Then there is the social situation. If your child had a stroke, there is a good possibility that they will be able to learn to walk (Remember all those therapy visits? That is HOW your child is able to walk!). So while you are happy beyond words that your child is not in a wheel chair, at the same time they are certainally NOT able bodied either. In my experience, you live a sort of limbo existence, somewhere between the severely disabled world which your child is better off than, and the non-disabled world where your child does not fit either.
What helped our family in a huge way was when God led us to the Children's Hemiplegia and Stroke Association, CHASA for short. There is no way anyone can understand who has not experienced it for themselves, but you FINALLY see other families who have a child with the same disability as yours. You share ideas. You share tears. You share joy. You understand what a HUGE deal it is when someone's child starts to walk or talk.
CHASA has been such a blessing in our lives I cannot even put it into words. They provide support and information. They have orthotic scholarships that can help purchase a needed leg or hand brace. They have scholarships for college and other types of training for young adults. But the best thing is that you finally know your family is not alone. There are others who understand.
Research into causes of Pediatric Stroke is badly needed, so that it can hopefully some day be prevented. Awareness is the first step--so please spread the word--kids have strokes too!
One way to help with this awareness is to share this Pediatric Stroke Awareness Montage. One look at all these beautiful children breaks my heart--yet at the same time I am SO proud of every single one of them. I understand just a bit of what they have gone through, and how difficult each new accomplishment can be. And if you watch the video to the very very end, you will see the smiling face of my son--he is second to the last.
He is my favorite Stroke Survivor--and I am SO very proud of him!
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