Tribes and Gangs

We thought of the name for this blog in a rare, “aha” moment of creativity.  Kohl loves music.  “Kool and the Gang” is a great band.  Why not pick “Kohl and the Gang?”

After quickly researching whether there were any copyright issues with this title, we were pleased to discover that the domain name was available.  We were even more pleased to learn, however, that our humble little blog would share the same name as a German, political satire TV show that aired in the 1990’s and used puppets to make fun of the latest German issues of the day.   That, in and of itself, is pretty awesome.

As time has gone by, however, the name “Kohl and the Gang” has taken on new meaning for us as we have discovered the importance of community as we go through this journey of parenting Kohl and Amelia.  As it turns out, the “gang” that Kohl has assembled in his three years on this Earth is among the things we value most.

This has a couple of meanings for us as Kohl’s gang comprises many different categories of people:

Family and Friends

It goes without saying that in times of difficulty, having a strong network of family and close friends is indispensable.  Having a traumatic experience like birthing a child with brain damage has a way of showing you who your true friends are.  We are extremely lucky to have learned how close and special our friends truly are.   Unfortunately, it seems all too common for an experience like this to destroy these kinds of relationships.  But we were lucky because the outpouring of support from our families and friends after Kohl’s birth still gives us goosebumps when we think about it today.

It must be our sparkling personalities, jovial dispositions and joi de vivre.

Joi de Vivre

Parents of special needs children

I hesitate to use the phrase “misery loves company” to describe the importance of connecting with other parents of special needs children because I don’t want to give the impression that raising special needs children is “misery.”  Sure, there are times when you feel like putting a sword in your chest, Samurai-style.  But having a child with special needs is an incredible journey of growth and never-ending lessons in which you learn what is truly important and what life is really all about.

And while all children come with different challenges, connecting with parents that are on similar journeys has been one of the most helpful things we have done.  Having a child with brain damage means having a child with countless issues and challenges.  That translates into an overwhelming amount of information on how to deal with those challenges.  So, information sharing with parents on similar paths is a great way to cut to the chase of what information is good and what is bad.

In addition to informally connecting with other parents of children who struggle with similar issues as Kohl over the years, we have also recently discovered an incredible organization called Hope for HIE.  This group was started by parents of children like Kohl who have brain damage caused by an abrupt lack of oxygen and blood to the brain.  The medical term for this is “hypoxic ischemic encephalopathy” or HIE, thus the name.   Through it, we have discovered a wealth of useful information, a common bond and new, meaningful friendships.

There tends to be an instant bond when you encounter another member of the “tribe” of special needs parents.

Parents of healthy children

But the fact that that this bond exists can have negative repercussions as well.  Within the world of special needs parents, there tends to be an “us versus them” mentality in which there  can be a negative view of parents who have been blessed with healthy children.  We have been guilty of it.  Rolled eyes when hearing what – to us – are trivial complaints about sicknesses or other routine issues that a healthy child might have.  Happiness with varying levels of jealousy mixed in when friends and family members celebrate new, healthy births or their children reach milestones that our child may never see.  We’re all human, and these emotions are almost impossible to not feel.

And while it’s okay to feel these emotions, if we let them consume us, it can create feelings of animosity towards parents of healthy children.  Nothing constructive can ever come of this.  Many of the laws that protect people with disabilities in this country are based on the principle of inclusion rather than alienation.  But what we do by having this “us versus them” mentality is alienating.

To any other special needs parents reading this, I’m not trying to be preachy because we are just as guilty of it.  This is, in part, a self-admonishment.  Putting it in print though, I think, helps us to avoid falling in this trap.

We have grown by leaps and bounds since Kohl’s birth, and I think our friends and families have as well.  Unless you have a child with special needs, it is impossible to ever fully understand what the experience is like.  But many of our friends, and most of the readers of this blog, have an incredible amount of empathy.

And this has truly been a beautiful thing.



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