Tuesday, June 24, 2014

Dads of Disability by Gary Dietz

Before you begin, let me say that this is the most difficult book I've ever read and reviewed.  Also, I'd like to apologize ahead of time because this will be a personal post as well as a review, and chances are it may end up a little lengthy.

Children.  Whether you have them or not, you have some in your life.  They're our future.  They're our purpose.  For most of us, the reason we get out of bed each face each day is in the hopes of making a better life for those little bodies.  They bring us grief and joy and make us look at the world in a whole new way.

From the moment of realization that a child is about to come into the world, people start to dream.  He'll be a famous football player. She's going to be a chess wiz.  My twins will be the first to co-president the United States.  We build up these ideas in our head of what our children will be.  We think of what we will teach them.  We plan.  We plot.  We fantasize about all the wonders that are about to invade our future.

But...what happens when the vision isn't what you planned?  The lawyer that you planned on having has been born nonverbal.  That football player you dreamed up will never step foot on solid ground and needs help just getting into his wheel chair every day.  That baby that you spent months waiting to just hold and smell and kiss is in an incubator and won't gain weight.  Touching your baby could cause the end of their life.  What happens when the dream is shattered before it even begins?

I can tell you from experience and years of therapy and research.  We have to mourn the death of our dream child so that we can embrace the life of the one that we've been given.  It's one of the most difficult things to do as a parent.  Some people are able to do this quickly and others never reach this stage.  

The most recent testing that I've read states that one in every four children is born with some form of Autism.  That's just one disability.  Most of us are familiar with Down Syndrome.  There are so many more disabilities that we aren't informed of.  Extra chromosomes can form on any strand of DNA.  It can also be that a chromosome is missing or mutilated.  There's brain damage.  Physical deformities.  This is still just scratching the surface.  

Having a special needs person in your life is difficult.  Yes, it's definitely rewarding and worth every second.  It presents challenges that are hard to face for the simple fact that they're unexpected.  Each day brings something new and you don't always know how to cope.  It's hard for people to give you support if they haven't lived with it because they simply can't understand what you're going through.  It's hard to get help even with a babysitter because people will be frightened.  What if they don't take the proper care of your child and something happens?  What if they don't know how to handle a melt down?  One of the children I met was a year old baby with Trisomy 18.  This child had spent his entire life in a hospital and would never be allowed to know what a home is.  His parents and siblings obviously had to make great sacrifices in order to give this baby the best life possible under the circumstances. 

Dads of Disabilities is a compilation of stories that Gary has put together.  Some are written by him, some are by other men, and some are even written about men but by women.  Each one has a common thread.  It's the story of a man who is having to deal with one of the realities of having a child with a disability.  

The reason this was so difficult for me to read is that each story hit me hard, in my heart.  I've lived through nearly every one of these scenarios.  After reading each one, I had to take some time to absorb what I'd read and take a little time to...well to heal.  Just knowing that someone else has gone through the same trials and knowing that they've felt the same feelings is overwhelming.  Having the support of some person you've never met can mean the world.  Knowing you aren't the only parent that's ever burst into tears when someone begins to show pictures of their children in their sports gear. I found myself crying as I read each story.  Don't get me wrong.  This isn't a sad book at all.  It's actually incredibly uplifting.  The reason I found myself crying was not what you'd expect.  After a trauma, once your body relaxes, and the shock wears off, crying is the next stage.  That's what it was like for me.  Each story that I read and absorbed and took the time to feel helped a little of the shock on my heart to wear off.  I could feel the weight and heaviness lifting from my soul.  

For me, this book was a tool of healing and faith.  My story is different from yours.  It may not serve the same purpose for you.  I imagine that for most of you it will become one of the most valuable tools for support.  Just the reminder that you aren't alone can be all it takes to restore your sanity some days.  It's not an easy road.  It's far more exciting than most roads, but it's not easy.  Every bit of help you get will smooth the way a little bit.

If you have a special needs child, I can't imagine not having this book.  I can't tell you the difference that it has made in me.  I  know I've been typing for quite awhile, but I really can't stress the changes in me.  Those that are closest to me have noticed that my heart has begun to thaw in all areas.  It doesn't matter if you're a mom or a dad.  This book has a story you need to read in it.  You may not go through the same situations, but I guarantee you or your spouse will go through similar ones.  Being able to understand what you're each coping with will be one of the most valuable tools in working together to keep your family as strong as possible.  

I can hear some of you out there saying you don't have a special needs child and don't know any and so this book has no significance to you.  Wrong.  Believe it or not, this isn't just about special needs children.  It's about the fact that our children aren't always what we imagine they'll be and we have to learn who they are and embrace it.  It's about that as parents we have emotions that we sometimes feel guilty about, but it's normal.  It's about people helping people to get through the hardships of life.  Just having that one person you can call and cry with when your nine year old child says their first word. Or, you may be the person who ends up with the parent of a disabled child who's have a mini breakdown.  Unless you understand where they're coming from, there's no right way to handle it.  It can be shocking and scary.  There's no such thing as being too informed or too aware, especially when it comes to your fellow man.

Now, I want to assure you that there are lots of possibilities for support and if one fails, please go to the next one.  Don't feel that it's hopeless and you're in this alone.  There are family and friends.  Many communities have support groups set up and you can make a simple phone call to find out how to get in touch with these.  There's always therapy or counseling or your local pastor.  For me, this book is such a valuable tool because it's right there when you need it.  It's sort of your guidebook.  If it's 3 AM and you have to be up for work in 2 hours and once again your child simply can't sleep, you're alone and don't want to wake anyone, simply grab it and give it a read.  It'll remind you that you aren't alone and that others have been blazing this trail.  You're just helping them to widen it for the future generations.

On a personal note:  Gary, thank you for being so patient with me during this.  What I thought would be a simple read and review really wasn't and I appreciate your understanding.  Also, I apologize for underestimating the power of your project :)

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