Tag Archives: Ataxia

Jordan’s Story (www.4jordan.org)

By Jason and Sherri Hubbard

When my wife and I were approached to be part of this special project, we were first humbled and then apprehensive.  We were humbled because our lives, while unique to some, are just that, our lives.  As any parent realizes, you just do what needs to be done. Life will throw you a number of curves but as you look back on your journey, you see that through the grace of God, somehow you just got by.  So humility is what we have as we share in this endeavor.

We are apprehensive because of the magnitude of this effort.  It is our desire to do a good job.  As you read these stories, you will find parents that openly discuss their fears, joys, concerns and desires about raising or having raised a special needs child.  So for us, the best approach is one where we are sincere in our delivery.

Our son Jordan died at the age of three from complications related to a rare disorder called Spinocerbellar Ataxia (SCA), commonly referred to as ‘Ataxia’.  Jordan began life as a healthy child but it was around his 18th month that we noticed a change.  Jordan began to display symptoms of SCA type 7.  For his last 18-20 months, my wife and I became the parents of a special needs child.  At that moment, we joined a fellowship of parents who have many things in common. 

We had dreams, concerns, moments of joy and sadness; many of the same emotions that parents of healthy children have but for us, these emotions were tempered with a reality that life would be different.  Different in terms of society’s view and different because life is so much richer when you are the parent of a special needs child.

My wife and I remember the times when we would openly take Jordan outside with his adaptive equipment, fully embracing what life offered him.  We were so appreciative of other parents that came over and talked to us as opposed to simply standing by wondering.   It gave us the opportunity to educate others and it reinforced our belief in the kindheartedness of others.  We understood that it was awkward for people to come up and ask questions and more often than not, we simply got stares from the many onlookers.

The richness of life comes by realizing all that it offers; taking time to find and smell the roses.  In many regards this is a simple coping mechanism.  In an effort to maintain sanity, you search for these golden nuggets. When Jordan lost his eyesight, (a by product of SCA type 7) music became a dominant medium to stimulate his senses.  As a family, we sat around listening to his favorite songs, having fun and creating the memories that will last a lifetime.  As a person that enjoys music, I appreciated that opportunity and more importantly, Jordan loved it. 

In the following stories, you will find that parents of special needs kids are no different from those of healthy kids.  They all want the same for their children – to be happy, healthy, and accepted.  It is our hope that you continue reading with an open mind and a receptive spirit as you glimpse into life through the eyes of a special needs parent.  Hopefully, at the conclusion, you will realize that while the definition of life may differ; many of the hopes, desires and wishes are the same as those for healthy children and their parents.

Thank you for your time and support.