Wednesday, June 4, 2014

Another Dirty Little Not so Much Secret: Handicapable Dad!

So, I'm sick!  

Not just sick.  

I am diseased!  

For real!

I have a genetic disease classified as one of the cerebellar ataxia's. I don't talk too much about it here because I don't like to make a big deal out of it.  Like everyone, I have better days and worse days.   

On a good day I can almost do anything I would like to, just slower than I want to.  On a bad day I can't even make a sandwich for the brats and Mama Bear has to use a sick day at work. 

That's a total bummer, but it is what it is, and it's not likely to ever change.  It's a play the hand you're dealt kind of thing. 

Yes, it is super frustrating!

Yes, it makes me feel like the worlds' worst dad because there are so many times I can't take care of the brats the way I want to.

Yes, I feel like a burden. I feel ashamed of my weaknesses, and I constantly worry that my boys are going to grow up resenting me because their dad is always going to be the sick dad, and I don't want anyone to see me as that, especially my kids.  

So, I force myself to compensate for my shortcomings.  I play with the brats rambunctiously,  I run around like a crazed lunatic laughing and shouting just like them, and it's all  in an effort to keep my illness from them as long as possible.

No, it's not a secret!

They know I walk with a cane, but they don't think anything of it because I try so hard to make nothing of it and to be as active a father I can be.  That, and they are still young.  

I get asked all the time, "Don't you just wish you could wake up one morning and be healthy?"

Yes, I kind of do, but I have to acknowledge that I wouldn't be the dad and person I am today with out my disease.  

As much as I feel like I am a terrible dad because of all the times I can't physically do things with my kids, I think that I am a pretty good dad too because my perspective is different than it otherwise might have been.

Does that make sense?

Let me explain it this way. 

I honestly believe that all the years of shame and humiliation I faced as a kid because of my piss poor genetics was really a good thing for me.  I know that at the time I felt much different about it, but now, as an adult, I look back and see it all as it really was, preparation.

I learned at a young age to take advantage of my good days.  I had to improvise and adapt because I was determined to not let my ataxia stop me from doing anything any one else could do.  There is nothing I hate more than limitations, so I always pushed my self hard to over come them.  I learned what it was to be sick and different.  Therefore, I tried extra hard to be more accepting and compassionate and sympathetic.  I learned a certain degree of patience because of all the hours I spent motionless, unable to move because my body really wanted me to stay in the position it was in. Most of all, I learned to cherish and truly appreciate those I love and care about and to not take them for granted because I often felt abandoned.

These are all life skills I had to develop because of my disease, and I still practice them everyday because they still need honing.  I'm probably a better dad because of it, and I hope these are skills I can teach my kids.  They don't need some disease as a mentor.


  1. I don't remember any of this when we were kids. I remember you playing baseball and throwing shot. Every dad has somethings about them that makes them feel like they are going to let their kids down. The time you spend with them and the experiences you share with them will out weigh everything else.