One Family’s Desperate Search For Help In The Cerebral Palsy Community
My name is Yu-Chen Hsueh. Despite living in Silicon Valley for 23 years and spending my entire career in software, I don’t blog. In fact, this is my very first post ever. To be frank, there are few things that I can spare the time to write about. There’s a very special reason I finally decided to put hands on keyboard and write this, and hope you have the time to read it. But first, a little background.
My family is comprised of myself, my wonderful wife Jaymmie, my able-bodied 8-year old daughter Jasmine, and her disabled twin brother Jayden, who has severe choreoathetoid cerebral palsy. This type of cerebral palsy causes unpredictable involuntary changes in muscle tone which manifest to observers as constant movement. The diagnosis devastated us at first, and we went through some dark times. I won’t chronicle those darks times in the first few years in this post – I may write about that at a different time – but suffice to say, Jayden’s condition was a gut punch to our family, as well as extended family. Once we recovered from the initial shock, the next question became: what do we do now?
The Diagnosis & Immediate Aftermath
We quickly found out major life changes were necessary. Jaymmie had a promising career in Accounting, but had to leave her job to be Jayden’s full time caretaker, and cerebral palsy truly demands 24/7 care. You miss a beat, and your child could die as a result; that is the reality. There are no days off, there are no hours off, there is no flexibility in when you give a tube feeding or when you give a drug dose. Sleep of more than 2-3 hours around our home became a distant memory. We also quickly learned that receiving assistance for cerebral palsy patients was extremely difficult.
We lived in San Jose, CA at the time and many people – including myself at one point – automatically assumed that assistance around Jayden’s care would be easy to obtain due to the SF Bay Area’s progressive stances on disabilities. Reality was quite different. The issue is not a lack of funding for disabled persons. There is indeed funding. The issue was how the funding was allocated – on a local level, it was allocated based on income, and even as a single income household, my income from tech work, while only average for the software industry, often put us near the back of the line for assistance, with funding running out well before it got to us. The other issue is that on a federal level, there is nearly no funding earmarked for cerebral palsy. While substantial federal money is earmarked for worthwhile causes such as tackling autism and fetal alcohol syndrome, there is shockingly almost nothing dedicated to cerebral palsy, a condition which affects 1 out of every 323 children! After suffering 7 years of major challenges securing things as fundamental as a wheelchair, a rehab tricycle, and incontinence supplies in San Jose, we knew it was time for a change and go somewhere Jayden and our family at large could have a better life. Life in San Jose had become stale: we rarely left the house, we ordered meals for delivery rather than went out to restaurants as we did in the past, it was a chore to move Jayden’s equipment in and out of our 3-story dwelling every time we had to go somewhere, and we were for all intents and purposes under self-imposed medical house arrest. I know that sounds like an overstatement, but it is reality for many families impacted by cerebral palsy. Families become invisible, because they are spending all of their energy fighting a chronic illness rather than enjoying the time they have together. Families become trapped in their homes.
First Steps Toward Long Term Wellness
Enter Orange County, CA. Jaymmie and I have always had a fondness for Southern California as we lived in West LA for a few years while I was attending undergraduate studies at UCLA. Through the years, Southern California was where we went to clear our heads, to feel like all was well again, to forget about our troubles temporarily, and of course Disneyland was one of the first places we took Jasmine and Jayden when they were 2 years old. Southern California had provided comfort to us, and we wanted it to be a refuge for our kids as well. One of the things we discovered with Jayden is that he is not responsive to very much stimuli. But boy does he love Disneyland and Mickey Mouse! Whether it was a character meet ‘n greet at the Disney parks, or simply the Mickey Mouse Clubhouse show on TV, Jayden would either shriek with delight or burst into hysterical laughter upon seeing Mickey or Minnie. Jayden expressed himself in his own way, but it was unmistakable: Disney, and in particular that Mickey Mouse red, brought out the joy in him. For a little boy with a feeding tube in his abdomen, who has issues with seizures and vomiting multiple times a day, who injures his legs all the time because he cannot control them, and who has been through more surgeries than most adults do in a lifetime, that joy meant everything. So we settled on a home in beautiful Rancho Santa Margarita and moved down here in late Summer 2017.
I will point out that we were not without choices. In fact, Orange County was not where we had originally planned to move. Our original destination was Dallas, TX. I grew up in the Midwest and spent a good deal of time in Dallas as a child, and also in adulthood on business travel. Dallas is a place I love, and due to selling my property in San Jose for a gain, it would have been a very comfortable financial move. We would have no mortgage, I would be able to keep working the same job since I am a remote employee, and from a very selfish perspective overall financial pressure would be substantially lower. Of all the places in our great nation that I could pick as my home, Dallas was without a doubt at or near the top of the list. But Dallas didn’t sport the Mickey Mouse red which put that foolish, giddy, unrelenting grin on Jayden’s face, and thus we chose to go to a place that would.