I am a contributing writer to various Philippine print and online publications. I blog because I enjoy writing about other topics that are not assigned by my editors. I'm a mom of four boys and wife to a man I consider my bestest friend in the world.
As a parent of a son with special needs, I have many dreams for him that I thought would remain just that -- dreams. But, through the years, God has shown our family that certain wishes could actually come true when we take the time to look for, and recognize, answers to our prayers.
In my wildest dreams, I never thought my son would get the chance to go surfing!
Honestly though, I didn't quite imagine receiving certain unexpected blessings that seemed so impossible to have many years ago. And yet, here we are, seeing James getting to enjoy life so much more because he's healthier and happier and is presented with opportunities that were not available when we were still living in the Philippines.
Last year, one of the best things that gave us so much joy was seeing James go surfing and do other fun water activities that we never thought existed!
Daddy and James on a paddleboard in Newport Beach
It was sometime in February 2018 when I chanced upon a blog post of Joyful Journey Mom who shared the list of special needs resources she compiled. Unfortunately, her website couldn't be found anymore because the domain seemed to have expired. Anyhow, I've read there about an organization called Ride A Wave that "enables kids with special needs to experience the thrill of riding a wave regardless of their challenges."
Curious, I visited their website and saw that they are based in Santa Cruz, California, which is 364 miles away from where we live. Still hopeful, I filled out their contact form and asked if there may be a chance for them to hold a beach camp nearer us. The next day, Don, a member of their advisory board, emailed back and suggested I check out their sister organization in Southern California instead.
Best Day Foundation has the best volunteers and staff members!
That was how I found Best Day Foundation, an organization that creates special days for kids and young adults ages 4 to 24+ who have Autism, Down Syndrome, Cerebral Palsy, Blindness, Cancer, Spinal Cord Injuries, and other physical and developmental challenges.
Eagerly, I visited their website, browsed the photos and videos, and got more excited when I found locations that are within reasonable driving distance. When I had James watch some of the videos and asked if he would like to go to the beach and ride a surfboard, his eyes lit up and he started smiling and laughing. In my heart of hearts, that was my affirmation that he should have that amazing experience!
Isn't that smile contagious?! :)
After discussing it with my husband, I signed James up for a slot for the May 20th activity in Seal Beach even though it was still three months away. In the meantime, we'd watch the videos on the website every now and then while I kept reminding James to patiently wait for a few more weeks. He would always answer me with a big smile.
May 20th turned out to be a little cold and cloudy though so I became a bit concerned about how chilly the water would be. Thankfully, aside from the helmets and life jackets, Best Day provided all participants with wetsuits to keep them warm. Everyone was so friendly when we got to the site. James was paired with his beach buddies, Heather and Bryan, who took great care of him while hubby, myself, and our son Gab, took photos and videos to preserve the precious moments.
When it was finally James' turn to ride the specially designed surf chair, I felt nervous but still excited at the same time especially seeing how far he and his surfer buddy were from the shore. Once they caught a wave and we saw them coming closer, everyone could see the big grin my son had. It was such an emotional moment for us to see James experiencing something that didn't even cross our minds to be a possibility!
Needless to say, the day was a huge success. Our young man was smiling all throughout that morning, in the car while going home, and up until he fell asleep that night. It felt so good to see him thoroughly enjoy that unique experience that I wish other kids like him could also get to have.
happy family at the beach
Since then, every time we show him photos of him surfing and being on the beach, he would express excitement and happiness at the memory. So I checked if there would still be other activities in SoCal in the coming months and fortunately found a slot for October 7th at Seal Beach. There, he was taken good care of volunteer Eddie, his assigned beach buddy for the day.
I am blogging about this now because I'd like to encourage other parents with special needs kids to likewise sign their children up to upcoming 2019 activities that start next month and will be happening in Florida, California (San Diego, Orange County, LA County, Ventura, Sta. Barbara), North Carolina, Virginia, and Maryland.
Best Day at the beach with new friends
Volunteers are also welcome to share their time! Please visit bestdayfoundation.org/volunteer to sign up and read the FAQs. Donors, please consider sharing your resources at bestdayfoundation.org/donate to help subsidize participants whose parents may not be able to shoulder even the minimal registration fee.
Dear readers, if you know of families who may benefit from this information, please do share it with them. I hope, one of these days, I'll be able to hear about a kid who was brought to a Best Day event because their mom or dad happened to read this blog post. It would be awesome to find out how more young people with special needs were able to experience one of their best days like our James had :)
Those who have been following this blog and have read my book, Embracing Disability This Ability, already know that James, my son with cerebral palsy, could not talk nor walk and can't even sit up by himself without the seat belts and harnesses of his wheelchair and car seat. But, despite James' limitations, our family continues to find ways in making his life better. We also keep praying and hoping for further signs of development on how he communicates and moves.
seeing James walk used to be just a dream
Since we moved to California in November 2017, James is still yet to have physical and occupational therapy services due to several factors, one of which is his transition from child to adult under the state's health care services system after he turned 21 last September. While we patiently wait for things to fall into place, I actively seek connections with organizations and caring individuals who have the heart to help the special needs community.
Last week, Canadian-based Trexo Robotics announced that they will be coming to Los Angeles for two days to allow mobility-challenged kids try their awesome device. I have been following their posts on Instagram for quite a while now and find inspiration in the stories of children who are being helped to walk using Trexo's enabling technology.
Thank you so much, Manmeet, Rahul, and Dina for giving James a chance to try the Trexo!
Without knowing where exactly they will be in LA, I resolved to bring James to them if they could give him a slot for a trial. I reached out to the Trexo team via direct messaging and got a call from COO Dina Nikitina on the phone who asked me a few questions. She then informed me the next day that they can accommodate us for January 24th at 10AM.
Early this morning, my husband, James, and I traveled 34 miles to Hawthorne where NAPA (Neurological and Physical Abilitation) Center is located. There, we met Dina as well as Trexo Robotics founders Manmeet Raggu and Rahul Udasi (read the wonderful story on how they started Trexo, here) who patiently helped James get comfortable in the walker with the robotic attachments before they got him "walking" using controls on a tablet.
For the first time in his life, James was able to move by himself with the help of technology and, while I focused on taking pictures and videos, it took me a lot of effort not to start crying upon seeing my son beaming big smiles while he took 199 steps in less than 10 minutes!
In individuals like James who hadn't experience how to walk independently and whose legs most likely do not know the correct motions needed to do this activity, I believe Trexo's innovative technology would be a big help in training the muscles and the brain to remember stepping movements through practice and repetition.
cherishing this new milestone in #gideonjamesjourney
After this Trexo trial, my husband and I plan to look for ways on how we could lease, if not buy, the device so James could practice walking more until such time he could, hopefully, graduate to a simple walker. We'd sincerely appreciate it if you could help us pray about this. Just like in the very beginning when we started in this special needs parenting journey, my family and I will keep on dreaming more dreams for this young man who never fails to give us immense joy each and every day.
“He will die early,” said the seven-year-old boy solemnly before he walked away. I was left speechless, staring at his retreating figure. I am sharing this several years after the incident when I have finally found the inner peace to write about it.
My family and I were at a party in my sister’s house and the kid was the son of one of their guests. The boy was talking about my then sixteen-year-old son, Gideon James, who looked like he was also only seven years old because he has cerebral palsy.
I don’t know exactly how the child arrived at such a conclusion after asking me questions when he saw me feeding my son blenderized food via a tube embedded in his stomach. But I guess, as many innocent children do, he made his statement based on what he thought was true.
one day old James
I wasn’t really offended. Just a little bit shocked to hear that sentence spoken aloud. The last time someone had told me, “Your son will most likely die” was when my then barely one-month-old baby was fighting for his life inside an intensive care unit incubator. He proved his neonatologist wrong and continued to defy many other specialists’ prognoses in succeeding years.
My son is a warrior and a minister. He has been fighting obstacles and overcoming them since the day he was born. He may not be able to speak nor sit up by himself but from him, my husband, my three other children, and I acquired so many lessons that we would not otherwise have learned if he had grown up “normal” like his brothers.
1-year-old James (2nd from left) with brothers circa 1998
Over the years, our home has become a school of sorts for all the members of our family where we were taught much, over and over it seems, about patience, understanding, compassion, empathy, acceptance, faith, and prudence among many other things.
How different life could have been if my son doesn’t have cerebral palsy! And yet, I don’t think our family would have become the strong unit it is now without the trials we went through together because of our special child.
8-year-old James (2nd from left) with his brothers circa 2005
People usually tell me they can’t imagine what they’ll do if something like this happened to them. And I assure them that they will find the strength they need if that time comes. When we got married, my husband and I never thought that we’d be given the kind of challenge we used to believe was only reserved for parents with unwavering faith and resourcefulness. Yet, we were chosen to be parents of a special child. And, so far, I believe we’ve been coping a lot better than we’d ever thought possible.
Through James, we’ve met kindred souls who have little angels of their own. And through them all, we’ve been assured that we’re not taking this journey alone. We have a spiritual extended family with members who unselfishly share with us time, knowledge, advice, and even precious resources because they know how hard it is when you try to do it on your own.
family pic 2014
I have long ago relinquished the question “Why me?” because a book, written by a mom who also has a child with special needs, gave me the push to instead ask, “Why not me?” I don’t remember the exact moment, or even if I did have one, when I had that imaginary bulb light up, and I realized that I am stronger emotionally and physically, more patient, and more resourceful than I’ve ever given myself credit for.
Turning my thoughts away from “what if” to “what now” made me accept the positive possibilities that this kind of parenting continues to teach me and the rest of my family. I’ve come to wake up in the mornings with a big thought bubble that says, “Bring it on! I will overcome anything bad this day will throw at me!”
20-year-old James (March 2018)
Still, there are times, when I am far too exhausted and vulnerable, when a niggling guilt would creep up on me and make me question if I had done something in the past that makes me responsible for my child’s condition. I am just thankful that those thoughts don’t come as often as before. In time, I’ve learned to forgive myself for those lapses of self-pity and anguish and instead pat myself on the back for doing my best and managing to survive the never-ending trials I deal with every day.
Special children don’t come with an instruction manual, but their families eventually discover what would work best for them. Ours did and my son gave us that rare chance to see the world through the eyes of someone who is not willing to be defeated by his disabilities.
2016 family photo
The death of one’s child, I believe, is one of many parents’ greatest fears. For moms and dads of kids with special needs, that fear hovers constantly and is difficult to ignore. And yet, it is our very own special children who teach us to forget about being terrified because they are still here with us to provide light and joy in our lives.
As you read this book, whether you have a family member with special needs or not, may our story provide you with inspiration and hope that God is also looking out for you … always.
Embracing Disability This Ability
*Note: This article serves as the introduction section of my book "Embracing Disability This Ability: A Family's Journey with Cerebral Palsy" that will be launched on September 14, 2018 @ 5:30PM at the Manila International Book Fair (MIBF) by CSM Publishing. You can find more information about the book, here and even have a sneak peek of Chapter 1, here. Thank you for reading! I pray that you will find encouragement and hope from our story :)
I love traveling and exploring new places, especially with my family. But on those instances when I have to travel for work, I always look forward to coming home and once more being with the people I love.
Baguio City, circa 2001
When my husband Nonoy and I were still a young couple, we decided that working abroad and leaving the other behind to look after our four sons should never be an option. Especially since our third son, James, has special needs and requires the care of both parents, we agreed to face financial challenges together rather than choose to work overseas and earn more, but at the cost of just one parent raising the kids alone.
We held on to our faith that God will see us through anything. And you know what? The Lord sustained us and provided for our needs, particularly during really trying times! Our prayer continued to be that if it was really God’s plan for one of us to work abroad, please let us go there as a whole family and not leave anyone behind.
New Year 2009
Several years ago, we found out that despite the passing of my U.S. Air Force veteran father-in-law in 1999, the petition he filed in 1993 for my husband and Noy’s sister (my third sister-in-law) was approved. Moreover, the petition could be passed on to a family member who’s willing to continue the sponsorship.
My first sister-in-law, who lives in Guam, asked us if we’d like to pursue the petition. Knowing that the U.S. is a lot more medically and technologically advanced than our home country, Noy and I started dreaming of better opportunities for James, our son with cerebral palsy, and our three other sons. Once more, our prayer remained that, God willing, He would allow all six of us to migrate abroad.
New Year 2014
Around 2014, my two US-based sisters-in-law started doing everything they could to process our papers. They consulted an immigration lawyer who facilitated the changing of my husband’s petition category from single to married, and hired another attorney to ensure that our oldest son, who was about to turn 21, would not be denied a visa.
The back and forth submissions and approvals of documents took many, many months. Each time we thought we’d completed everything, we’d be asked to submit a certificate, another file, and another, and another until we were left wondering if that phase of submitting requirements would ever end.
For more than three years, our family felt like we were living in limbo, unable to make long-term plans, uncertain if we could really leave or not. Many times, we had prayer moments where we pleaded with God to just let us receive a yes or no answer from the United States Citizenship and Immigration Services so we can be done with the seemingly endless wait and move on with our lives.
celebrating James' 17th birthday in 2014
In early May 2017, we finally received our visa interview scheduled for June at the U.S. Embassy. From experience, we anticipated more bumps ahead, but we held on to our faith that God will see us through until the end of the journey.
Unfortunately, two of our sons initially didn’t pass the U.S.-mandated medical exam and had to undergo additional tests. Only four of us went to the June interview where our eldest son, Rey, was almost denied a visa due to the “age-out” issue. Despite our pleas, the consul refused to look over the legal papers drafted by our lawyer proving that Rey was still a minor when the petition was reinstated.
We were all in tears as we approached the releasing section to receive further instructions. Obviously, it was impossible to feel elated about going home with just three visas instead of four. Mercifully, the lady at window scrutinized our documents thoroughly and told us to wait as she consulted her supervisor, who then returned our family’s thick file to the consul.
After what seemed like an eternity, we were called back to the window to be told that Rey would also be issued a visa. As always, God was watching over us!
June 2017 -- after the visa interview (minus Rey who was already late for work after spending five hours in the U.S. Embassy)
With plans to travel together, we waited for two months for James’ and Josh’s test results, only to find out that our special child had to undergo another series of medical clearances. Although a difficult decision, we all agreed that my husband and two sons should fly ahead to the U.S. in early September so that Daniel, the youngest, could still make it to senior high school enrollment.
Josh, who was approved for a visa in August, insisted he stay behind to help me take care of James while we waited another couple of months for more of his brother’s additional medical test results.
The first month away from my husband and two sons was tough. Thankfully, the video calls, often-teary conversations, that we made almost every day helped us to cope. None of us thought things would get more difficult, but they did.
first batch to arrive in California greeted by my two sisters-in-law
It was a long and stressful day when Josh and I brought James back to the St. Lukes Extension Clinic the day before my special child’s U.S. visa interview in October. After 13 hours of waiting and lots of hassles in between, he was finally given medical clearance.
The next day, we encountered another problem with a missing document the consul asked for but which was already submitted during the June interview. So I had to re-submit a copy of the said file via courier a day later, unsure whether James would be issued a visa any time soon, or if they would ask again for additional papers that would further delay the process.
With Josh’s visa expiring earlier than mine due to the additional medical tests he had to undergo, my second son had to be booked on a solo flight so he would arrive in the U.S. without any problems. This new development left James and me alone for another month.
James' 20th birthday without his dad and two brothers
Those weeks were probably some of the loneliest in our lives, when I realized that homesickness isn’t really tied to a physical place. Rather, it is about separation from desperately missed loved ones. Now I know firsthand that it is possible to be homesick for people, too! Our house in Alabang by then already felt like an empty shell.
As days turned into weeks with no visa in sight and no updates from the U.S. Embassy call center agents I talk to almost everyday, I began to wonder if I’d ever see my family again. Although I kept busy during the day packing and selling what’s left of our stuff, I would feel deep despair at night as I watched James sleep, while longing for my husband and other sons. Once more, faith in God’s plans kept us hoping for the best.
It felt surreal when James’ visa finally arrived at the house and the mad scramble for last minute packing finally began. Despite my worries of how to survive a 20-hour trip with a wheelchair-bound child in tow plus four big pieces of luggage and another four carry on bags, my determination to do everything I could to be with my family was greater than any other hurdles I may still encounter.
saying goodbye to my extended family at the airport
I was deeply grateful that my mom, siblings, and nieces arrived the day before our departure to help me clean the house and finalize everything before my son and I left for the airport. Their love and support were such a welcome reprieve from the loneliness of the past weeks.
The date November 16, 2017 will forever remain in my memory as the day I finally found myself home again when I felt my husband’s arms around me the moment James and I emerged from LAX’s arrival ramp. All the apprehensions and exhaustion instantly faded away with the knowledge that we were, indeed, finally where we were supposed to be.
I’ve read somewhere that we will never know how strong we could be until being strong is the only option we have left. I can attest to that, given everything that we’ve been through since we started our immigration process.
California, March 2018
I’m sharing our story to encourage other families to keep holding on to each other and to continue trusting in God’s leading in the midst of challenges and temporary separations. Have faith that He will see you through. Remember, too, that many times, life may take us to unexpected places, but love will always bring us home.
NOTE: This story was originally published on pp. 17-19 in Family Matters Magazine's June-Aug 2018 issue, the digital copy of which can be found, here.
I was in first grade when I started to get hooked on books and filled up several library cards every school year from constant borrowing. In high school, I once received an anonymous note (still tucked somewhere inside a box in my childhood home) that said, "You irritate me because you're always reading!" In my mind, I simply answered, "Whoever you are, I wouldn't expect ignorant people like you to understand why I love to read!"
Anna Quindlen fan
Honestly, I was surprised to find out that famous author, Anna Quindlen, had a similar experience during her childhood. Somehow, it feels nice to know that I wasn't alone in being "persecuted" for having that insatiable urge to read.
Although I have been a fan of her work for years, I only recently got my hands on "How Reading Changed My Life," which my son kindly borrowed for me from his school's library. Thankfully, their online catalog makes it easy to check what titles are available.
Unfortunately, I had to leave all my books in the Philippines when we moved to California a few months ago and I am still unable to build my personal library here due to space constraints. In the meantime, I have to be content reading borrowed titles and writing down passages that deeply resonated with me instead of highlighting them on the pages of tomes that I own.
my youngest son, who loved being read to by his dad at bedtime as a toddler, is now in senior high, writes for the school paper, and is in the honor roll :)
Here's preserving in this blog post the quotes I liked most in the book so I would be able to come back to them more easily any time I'd want to. I hope that fellow bookworms and writers reading this would also appreciate the following lovely thoughts and messages ...
"Experience, emotion, landscape. The world is as layered as the earth, life cumulative with books. The eyewitnesses die, the written word lives forever."
"We read in bed because reading is halfway between life and dreaming, our own consciousness in someone else's mind."
"All of reading is really only finding ways to name ourselves and, perhaps, to name the others around us so that they will no longer seem like strangers ... I am not alone. I am surrounded by words that tell me who I am, why I feel what I feel."
my second son, who's now 22, already had numerous articles published in newspapers and magazines since he was 13
"We are writers. We danced with the words, as children, in what became familiar patterns. The words became our friends and our companions, and without saying it aloud, a thought danced with them. I can do this. This is who I am."
"Perhaps it is true at base we readers are dissatisfied people, yearning to be elsewhere, to live vicariously through words in a way we cannot live directly through life. Perhaps we are the world's greatest nomads, if only in our minds."
"This is what I like about traveling: the time on airplanes spent reading, solitary, happy. It turns out that when my younger self thought of taking wing, she wanted only to let her spirit soar. Books are the plane, and the train, and the road. They are the destination and the journey. They are home."
"In books I have traveled, not only to other worlds, but into my own. I learned who I was and who I wanted to be, what I might aspire to, and what I might dare to dream about my world and myself."
books as exchange gifts with fellow writers during our 2016 Christmas party
"There was waking, and there was sleeping. And then there were books, a kind of parallel universe in which anything might happen and frequently did, a universe in which I might be a newcomer but never really a stranger."
Deeply beautiful stuff, huh? What I love most about Anna Quindlen's writings is her ability to clearly express what she wants to say in finely crafted sentences that are a delight to read. If you like what you've read here, I suggest you look for "How Reading Changed My Life" and her other titles. Although I like her novels, I love her nonfiction works more -- "Loud and Clear," "Thinking Out Loud," "Living Out Loud," "A Short Guide to a Happy Life," and "Being Perfect" -- and miss my personal copies very much.
If you're also an Anna Quindlen fan, do share in the comments section which of her works touched your heart the most. I'd love to read your stories, too!
Dear readers, my apologies for not being able to update my blog for quite a while now. There have been so many changes in my family's life in the past year that required a lot of my time. Don't worry though because I'll be back with new posts and stories, soon! :)