How We're Moving Beyond Our Son's Severe Disabilities
This is the story of a handsome little boy with a twinkle in his eye and a smile that brightens up the room. Spinal Muscular Atrophy (SMA) causes Branden severe and profound disabilities and a wide range of complex health issues. He faces difficult challenges, but his attitude makes growing up with Branden and SMA meaningful, inspiring and happy.
Branden quietly came into this world four and a half years ago. His cry was silent, and he was immediately rushed to the neonatal intensive care unit to treat pneumonia and fluid in his lungs. It broke our hearts having to be physically separated from him, unable to cuddle, kiss and comfort him, but we admired his courage lying alone over many days and nights, supported by a mechanical ventilator and equipment to continuously monitor his health.
He recovered after a week, but the joy of having him home was soon tested by constant worries over his general weakness (hypotonia) and delay in development milestones. His relaxed nature persisted for months, until his weight stalled. Upon celebrating Branden’s first birthday, we decided to have him undergo a genetic test.
As parents, we shared in Branden’s older brother Jaden’s excitement about having a younger brother. They would be able to run and play together, to make friends, go to school and learn and discover the world! These hopes were shattered that day the genetic test confirmed that Branden had SMA. Based on his clinical symptoms, with neither treatment nor cure available, we were told it would be a hurdle just to get him to his next birthday. The hopes we’d had were crushed.
We don’t think there are words that can fully describe the indescribable trauma, devastating pain, shock and sorrow we felt upon learning his diagnosis. We lost the path in life we’d cherished and faced instead a deep, dark empty hole. We were lost and staggered around this emptiness, into which our tears fell as we cried and cried. Why him? Why us? Why are we at fault? What’s going to happen? How will Jaden take this?
What followed in the first month is a blur. Before we had time to steady ourselves, things got worse. Jaden got chicken pox and then hand foot mouth disease (HFMD), so we separated the boys because we didn’t know what else to do. Branden got HFMD anyway, which caused his vital signs to plummet, and he ended up in hospital.
Funnily enough, this next tragedy was a catalyst for the change in perspective that we needed. We’d felt real loss, but every new day still dawned. We’re all here today, so let’s look forward to tomorrow. Instead of looking down into that abyss, we can look up. And by looking up, we see things. And today, here’s what we see:
We accept what we can’t change this; SMA is here to stay with Branden and our family. It starts with acceptance. After the first month of finding out about Branden’s SMA, we wrote to all our family and friends to share what’s going on with our life and how we felt, and we haven’t looked back since. There’s so much Branden cannot do, and he will always live with many health complications and risks. He likes to ask “why” to so many things and will keep asking until he understands. We answer his questions to the best of our ability so he can move forward.
We won’t give up. Branden’s not shy to ask for help, to say please, to always say thank you. So like him, we focus on what we can do rather than on what we can’t. There’s so much to be done, but it must be done one step at a time: Rome wasn’t built in a day, as they say. We need to accompany Branden on this journey. He’s such a fighter, always bouncing back quickly from any setback. Giving up is not an option.
We smile every day. Branden has a wonderful attitude and strong spirit, which shine through his eyes and sweet smiles. He smiles even when he is ill and hospitalized or enduring the countless visits and tests with the neurologists, nurses, nutritionists, orthopedic surgeons, pulmonary specialists, physical therapists, occupational therapists, hydro therapists and more who care for him. He smiles often and readily shares joy. We do the same.
We live our life as normal. Yes, any travel is limited. Even shopping malls are best avoided. Before going to a restaurant we need to check accessibility, seating and environment. We are still not sure how he can attend kindergarten and school. All activities need proper planning. But Branden doesn’t complain or gripe about these limitations. (If he makes a fuss, it’s often over toys with his brother Jaden!) And Jaden is equally wonderful as our son and brother, who has a beaming smile and laughs heartily. As they can’t walk together, Jaden loves to push his “tee tee” around in his wheelchair. And if he’s not pushing, he walks beside Branden as we push the wheelchair, both brothers holding hands. That’s part of their everyday life — different to others, but normal (and special!) to us.
We’re blessed. That’s not to say we don’t get frustrated and demoralized and worry about health risks and the increasing financial strain. Because SMA is a congenital disease; all health insurance policies for Branden are declined. The special equipment we need to keep him healthy and mobile is expensive. And if the potential SMA treatment drugs going through the U.S. Food and Drug Administration Drug Approval Process are successful, it’s reasonable to expect huge costs every year for life.
Right now, we are happy to have celebrated Branden’s 4th birthday, and we hope there are many more to come. We are thankful that Brandon has reached more than twice the age we were told he would reach at the start. We look forward to helping Branden fit into school and society, and to help him experience a childhood just like other kids without disabilities. We believe he can contribute richly to society, like how he does today in our family. Let’s not be shy about the challenges and constraints faced by children with disabilities, and let’s commit to driving change needed for a better brighter future for them.
We are happy to share more and can be contacted by email at [email protected] or at our Facebook group called “Branden Lim – Growing Up With Spinal Muscular Atrophy (SMA).”
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