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.