For the past 17 years, people have been telling my husband and me that they couldn’t imagine doing what we do in taking care of our son with special needs. I’d usually say that any loving parent, given this challenge, would always find ways to deal with the circumstances.
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| James' 17th birthday on September 2014 |
I don’t think anyone could ever be prepared to have a family member with a disability. We definitely weren’t and struggled for years to come to terms with our son’s fate. I personally went through phases of sadness, anger, and despair before I finally felt acceptance, hope, and joy.
To this day, I can still recall the neonatologist’s question while we were beside the incubator where my then 27-day-old son was fighting for his life. “Have you had him christened already?” I remember staring at her and shaking my head as the impact of her words sank in.
Our Gideon James was born via normal delivery during my eight month of pregnancy. My water bag broke early so my obstetrician already had to induce birth. The pediatrician we unfortunately trusted to “catch the baby” came only the day after to first tell us she was in a rush because her car was double-parked downstairs. She then examined my son in less than five minutes, gave us a prescription to have him get shots within the next few days, and cleared us to go home.
The year was 1997. I haven’t heard about the Internet and parenting magazines were yet to become a trend, so all I knew about taking care of an infant I’ve read from baby product brochures and my mom’s old copy of Dr. Spock Baby and Child Care published in the 1960’s. The pediatrician neglected to instruct me about caring for a premature baby so I simply took care of him the same way I raised my first two, full-term, sons.
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| James, a few hours after birth |
It was much later when we learned that James’ underdeveloped and very sensitive immune system would make him extra prone to bad infections even by just catching his brothers’ cough and colds. Before he turned one month old, we found ourselves in a hospital emergency room with a baby who wouldn’t wake up and having internal hemorrhage.
He spent 10 days in the Neonatal Intensive Care Unit, used up several huge tanks of oxygen, acquired meningitis, and had two cardiac arrests before being transferred to a private room for another 30 days. Months later, he was diagnosed having Spastic Quadriplegic Cerebral Palsy.
Focusing on the silver linings
Life with a special child is not easy. There are huge medical bills to pay, numerous specialists to consult, and PWD (Persons with Disabilities) issues to fight for, among many other things.
However, when I set aside the trials to instead focus on my child, I can honestly say that having him as he is, is one of the best things to happen to our family. We stopped hiring any house helper or yaya since 2010 as it has already become a source of stress. So our other three sons learned to help with various chores at home as well as alternately take care of their brother whenever my husband and I need to go to work or spend time together just to recharge.
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| siblings in 1998 from left: Rey, James, Daniel, Gab |
I’ve observed how Rey (21), Gab (19), and Daniel (16) seemed to have matured faster by being given responsibilities not normally thrust upon boys their age. They became reliable young men who are gentle with little kids like their younger cousins and who know the importance of tolerance and understanding when dealing with people who have disabilities.
Yes, life can sometimes feel so overwhelming but seeing my son smile, just because one of us said something funny, or watching his eyes light up when hubby or I arrive after being gone for several days on a work-related trip, is worth all that we’ve been through since he was born. We believe he has greatly helped strengthen and unite our family through the years as we found ways to help each other out and work around each other’s schedules.
It is always heartwarming to see our firstborn usually greeting James first when he arrives from work by tousling his brother’s hair and saying Hi even before he changes clothes. Equally heartening is knowing that our second son could always be relied on to change James’ diapers or prepare his tube feeding in case my husband and I are out of the house. Our youngest, likewise, could confidently say, “Ako’ng bahala, Mommy!” every time he’s the one who needs to stay home alone with James for several hours.
Staying positive
James cannot talk nor sit up by himself. He needs to be propped up on a car seat or stroller with seat belts to stay upright. Thankfully, he is still able to express happiness or dissatisfaction through facial expressions and incomprehensible babble. It is precious to hear him laugh while watching his favorite DVDs or catch him pointedly looking at his feeding bag and pump to let us know he is already hungry.
As we celebrate our other three son’s accomplishments, we are equally grateful for every small development in James and the little things he learns to do. We rejoice in those tiny achievements no matter how few and far between they come. As parents, we know we just have to continue providing for his needs as much as we can to make his life more comfortable.
Many of us, I’m sure, can’t even begin to imagine being stuck in a chair, unable to move around as we want to, and not having the capacity to verbalize exactly what we need, day in and day out. So when I encounter any kind of difficulty, I think about my son’s life. If he could withstand his frustrations and smile above them all, I should be able to do so much more!
Of course, I don’t think everything we’ve been doing would have been possible without our faith in God. He has been our constant guide and number one cheerleader. He had taught us that trusting Him for all our needs would always see us through.
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| a 2015 family photo |
My husband and I may not earn as much as we want to, nor are able to buy a lot of things we’ve been wanting to have such as a vehicle of our own to be able to bring James out more often. Yet God has blessed us countless times and in many ways so we still get to enjoy memorable outings with our whole family every now and then.
LIFE IS GOOD. We have to remember that. We just need to choose and see its positive aspects and not allow the bad ones to ruin our perceptions. Having a family member with disabilities should never be considered a burden. These special people have a lot to teach us in terms of patience, contentment, happiness, and faith. Allow them to touch your heart. Our James did, and we are much better for it.
© Ruth Manimtim-Floresca, article originally published in Family Matters Magazine, Sept-Nov 2015 issue, pp. 22-24.
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