Ginta — Thinking of others gets everyone moving the right way

Daniela Ginta writes in The Armchair Mayor News on Fridays.

COLUMN — This past Saturday, a boy we know and love turned 10. His story writes itself differently than mine or yours. It started doing so five years ago when he was diagnosed with a genetic disease called Duchenne muscular dystrophy, for which a cure has yet to be found.

Because of a mutation, one gene cannot function the way it should and it does not produce a protein called dystrophin, which muscles need in order to perform their usual functions.

As he grows, his muscles become weaker since cells do not have the required strength the missing dystrophin would provide.

The journey from the day when his parents called me with the diagnosis to today, has been a long one. We sat in my kitchen mixing tears with tea that had no purpose other than to provide a connection with the tangible world they felt viciously thrown out of.

The learning curve from then on, steeper than ever imagined, got slippery at times too. They kept on going, though, opening doors they often had to carve out of what seemed like solid stone walls. They’ve come to know one thing: when going around would make the journey longer, you make your way through. Time is precious for all, yet the increments of theirs became painfully short when their son’s condition was called out loud.

As much as they could and with a restrictive budget, they hurried to travel places so their son can see the world and smile. He did. They did too, but shadows of worry loomed, knowing their son’s affliction comes with a timer… They tried harder knowing it’s all worth it. Such is the journey of discovering how to make the world better for someone you love more than yourself.

Many people huddled around Dacian’s family five years ago when they learned of the diagnosis and few are still there, but life disperses people and no one is to blame, even when people opt for distance because they don’t understand that it is not about their pain of seeing pain but about the ability to be there despite of. The fact remains that to feel forgotten in times of trouble makes the journey countless degrees tougher than it is already. That is often what happens to families like Dacian’s.

Along the way, they’ve encountered other stories like theirs, they’ve met people who have their hearts up their sleeve when it comes to helping children that were dealt a less than fair card.

Courage is learned in different ways and they’ve come to learn of theirs by watching their son grow into a boy that refuses to leave joy behind and can be as silly as the next child, and then again, as profound in understanding life and what follows after as the wisest and most fearless of us. I am not there yet, so I stand in awe of his ways. I came to understand that when he does that, and because of it, he makes the world around and its people wink and smile, instead of wince.

Birthday parties have become fundraisers for a much needed wheelchair-equipped van Dacian will soon need in order to keep moving. Such equipment comes, absurdly enough, with a price tag that should be lowered through government subsidies. It is not.

Yet beyond the frustrations along the way, and through many years of having to climb over and dig through high mountains, boy and parents learned one thing: people care. Classmates and people from their Saanich community baked cookies and made lemonade to help raise money; firefighters, long-time dedicated supporters of muscular dystrophy — a large umbrella that comprises many variations of the disease, including the one that afflicts Dacian – have provided unyielding support and they will keep on doing so.

It’ll be a while until the van becomes a reality. Government funds have recently been cut and grants that would provide extra help for families of children with special needs, and other people who need them badly, have been put on hold.

Fundraising took Dacian’s parents through bouts of feeling guilty that they have to ask, to being overwhelmed when people stepped forth with smiles and more, and through it all, and while not knowing what’s to come, but hoping nonetheless, they’ve learned that they are not alone or forgotten. People care. Thy needed to know that.

We’re all on borrowed time, but we can still afford to shrug and let days slip by just because. Because of Dacian and others like him, I cannot do that anymore. Because of how he’s learned to smile despite everything life has thrown at him and because he regards it as a ‘it is what it is’, I stand corrected in how I think of people, life, gifts of joy and what’s really important: today, now and what you make of it when you think beyond yourself. We understand more of ourselves and our purpose as people when we realize that we are all tied by a ribbon we can make as wide and strong as we are willing to: kindness through caring.

It truly makes us all move better, no matter where we go from here.

A fundraiser project was started by our family here in Kamloops. Should you wish to contribute, please contact me at the email address below, or through my website or Twitter account. Thank you!

Daniela Ginta is a mother, scientist, writer and blogger. She can be reached at daniela.ginta@gmail.com, or through her blog at http://www.thinkofclouds.com.