One Family’s Discovers Help And Support In The Cerebral Palsy Community

Yu-Chen Hsueh is CCPM’s newest board member, joining us in April 2018. Yu-Chen wrote about his families struggles and triumphs with their son Jayden recently, and he wanted to continue their story, particularly how Orange County and CCPM have changed their lives for the better.

Why Orange County?

Rancho Santa Margarita has been more than we expected. I have been asked “Why Orange County?” by many of my friends from the Bay Area. Orange County has been so good to us that it makes it very hard to explain. First, there is the logistical perspective: in San Jose, Jaymmie had to drive both Jasmine and Jayden to school every morning, which took over an hour, oftentimes 1.5 hours. Jaymmie also had to fight tooth and nail for every piece of rehab equipment Jayden was ever provided with, and the same went for services such as Physical Therapy. Here in Rancho Santa Margarita, we were stunned when the school district called us – with no action from our side – to tell us that Jayden had been assigned a school bus to pick him up everyday. Similarly, the regional agencies in Orange County processed Jayden’s files quickly and called us to arrange assessments, visits, treatments, etc. While I am not going to claim that Orange County has been perfect, as there are definitely still things you as the parent have to fight for, but it has been an absolute dream to not have to slug it out just for the mere fundamentals. The system here just works.

‘That Moment’: Finding The Community & Support System

Truth be told, the fact that everything worked nicely from a logistical standpoint in Rancho Santa Margarita was somewhat surprising, but not altogether a shocker to us. In fact, we expected logistics to be easier to work out in Orange County. What came next was the true shocker: the cerebral palsy community here. That was entirely unexpected.

I had work to finish up in the Bay Area, so Jaymmie and the kids moved down to Rancho Santa Margarita a week before I did. That first week, while shopping at the local Target store with Jayden in tow, Jaymmie was approached by Mrs. Debbie Fragner, who introduced herself as founder of Children’s Cerebral Palsy Movement. They spoke, and Jaymmie called me in tears later that day and told me about her conversation with Debbie. She was overcome with emotion that someone out there really cared about children with cerebral palsy, and we knew right then we had made the right decision by coming down to Rancho Santa Margarita. Meeting someone like Debbie was a first for us. In the Bay Area, Jayden had his guardian angels as well – many school teachers, physical therapists, and aides spent their own time and resources to help him, and we are grateful for everyone of them. However, there was only so much they could do, as they had many patients to care for, and despite the grandest of efforts, oftentimes the system is just tough to deal with. What was special about Debbie is that she had left a promising corporate career and dedicated her entire life to fighting for children with cerebral palsy. Jaymmie and I had never seen that level of dedication to our cause.

Turning Point: Oso Fit Fun Run

Jaymmie’s chance run-in with Debbie was in August 2017. Fast forward to March 3, 2018. That was the day my entire family – yes, including Jayden! – participated in the Oso Fit Fun Run in Mission Viejo, CA. Debbie and Children’s Cerebral Palsy Movement had set up a quarter mile run just for kids with cerebral palsy! With support from the Capistrano Valley High School boys track team, kids with braces, crutches, walkers, and wheelchairs were able to have their own running event and enjoy the thrills of participating in a friendly race. That day, I saw children who may never take a single step in their lifetime get cheered on by a raucous crowd while helped by running buddies pushing their wheelchairs; I saw my own son Jayden pushed around the racecourse in his wheelchair by his twin sister Jasmine; I saw kids with walkers keeping up a rapid pace and competing against each other as if they had no disability at all; and most of all, I saw a community from all over Orange County come out to support those who may never be able to enjoy life the way us “normal” people do, but who were 100% “normal” in every sense of the word for those few hours. In short, what I saw was children who have been through more than most of us can imagine actually living their lives freely, with chains temporarily unshackled. It was beautiful, and that day is forever ingrained in my memory as one of the brightest days since Jayden was born in 2009.

Since Oso Fit Fun Run: The Impact Just One Day Can Have

My family’s life was forever changed by the Oso Fit Fun Run. Since that day, we have resolved to not let cerebral palsy dictate our lives. While before, something as simple as going out to a restaurant to eat was nearly impossible, or alternatively meant splitting up the family so one parent could stay home to watch Jayden while the other went out, we have decided that going forward, we will all go out to eat at least once a week. We live in an amazing area with so much to explore that we are also making an extra effort to go out as an entire family and check out our surroundings. Whether that means going to one of the many green spaces Orange County provides for recreation, or taking more family trips to Disneyland, or visiting one of the many fun places nearby to hang out, we are of the mindset that if children with cerebral palsy can participate in a race, and if Children’s Cerebral Palsy Movement can move mountains to arrange such an event, then there is no reason we need to be cooped up between our four walls and let the wonders of Southern California that we have loved for so long just pass us by. If anything, we owe it to Jayden to show him why Jaymmie and I fell in love with Southern California in the first place. We owe it to him, and to ourselves, to let Jayden experience the same freedom he felt those few hours during the Oso Fit Fun Run, and even more beyond that. It took dragging myself out of bed early one morning, putting the past behind me, putting faith in Debbie and Children’s Cerebral Palsy Movement, putting faith in Jayden, and opening my mind to what seemed impossible in order to see the full extent of what is possible with the right attitude and support.

Look, I am not the kind of person who will tell you that life is completely rosy. Those of you who know me personally can attest to that firsthand. Being the parent of a child with cerebral palsy takes an unrecoverable toll on you. It makes you re-evaluate what is important in life. It makes you feel very down during days you would otherwise feel very up. It makes you wonder that dreaded “what if” question no matter how hard you try to push it out of your mind. It makes you feel angry at times, sad at other times, and most of the times just outright frustrated and confused at the “why” part of the equation. I will be honest in that I personally – and very much my personal opinion only – feel there are more bad days than good days when it comes to cerebral palsy. When Jayden vomits in a fine dining establishment, I will confess to feeling a mix of sorrow for him and also embarrassment for ruining another patron’s expensive meal. Those are the good days; the bad ones are nearly unspeakable. The last 8 years raising Jayden have been a blur, and we have no idea what the next day, much less the next year or next 8 years, will bring. I am a scientist by education, but an engineer and businessperson by trade, all of which call for realism – thus I am realistic that Jayden has nearly no chance of making a full or even substantial recovery from the brain damage he suffered at birth. You take things one day at a time and remain grateful for every day you have with your child where there is more sun than clouds.

All that having been said, I can tell you this much: if you are a family dealing with what we dealt with, please reach out to us. If you don’t feel like anyone else out there will “get it,” do not give up, because there are in fact other people who totally get it. Even if you do not reside in Orange County, get in touch and let’s see what we can do to help each other. Cerebral palsy respects no boundaries, and we should not either when fighting back against it. I know many of you are out there, perhaps living in isolation like we did for so many years – please do not remain trapped in your homes like we allowed ourselves to. You have the power to reach out and we are stronger as a community, no matter what challenges come at us. It took me, a lifelong cynic, a few months to realize what Debbie knew from the day she reached out to my family: cerebral palsy is a diagnosis, not a destiny. We may or may not be able to defeat the medical condition known as cerebral palsy. But through the power of community, positive thinking, and challenging the notion of what we feel is possible, we can certainly be the captains of our own destiny despite the diagnosis!