Wednesday, September 05, 2018

One Day at a Time -- Living with a Loved One Who Has Cerebral Palsy

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.

16-year-old James
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 PublishingThank you for reading! I pray that you will find encouragement and hope from our story :)

*Edited 2019: Embracing Disability This Ability is now available in the Philippines at National Book Store, PCBS, and other bookstores nationwide as well as online from Lazada and Shopee. For those in the U.S. who are interested in getting a copy, please send me a private message via the Embracing This Ability Facebook page

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