This is my first post to my new blog. I have another blog named “dadsfavoriteword” that has given me the chance to share my life’s experiences as a dad, husband and friend using one word that seems to exemplify what I am going through at any one time. This blog however, will certainly be more raw and emotional than I am used to writing. This blog concerns a teenage boy who is not my biological son, but a son that I chose to have 11 years ago. His name is Charlie.

Although a lot of what I write in this blog will be about Charlie and his battle with Duchenne Muscular Dystrophy, it will be more about what I have gone through, am going through, and will be going through in the future. It is my hope that the things that I go through, will somehow help other dads who have sons that are going through the same thing. Not that there won’t be moments that will appeal to moms as well, but dads with sons that have Duchenne need some special attention.

The Beginning…

So my journey with Charlie begins. I first met Charlie by mistake actually. His mom, now my wife, was recently divorced, working full-time and raising 3 kids – Charlie (then 5) and twins Jillian and Cooper (age 18 months). We had just started dating and she was in the midst of selling her house and the yard needed to be mowed. I was off one day and decided to go over and mow the grass and weed eat and all those necessary things that must be done – especially when trying to sell a house. Well what I didn’t know, was that they were actually home that day. Imagine the surprise on Jennifer’s face when I pulled up to the house and started pulling out all the yard equipment! We had already planned that she wasn’t going to introduce the kids to me yet until we knew for sure that we were going to stay together. Well, that plan was not well executed.

Charlie came to the door like any other inquisitive 5 year old would and was wondering what I was doing there. Jennifer proceeded to tell him that I was there to take care of the yard. Well, me being me, I couldn’t pass up an opportunity to take Charlie outside and spend some time with him. Isn’t there a saying that talks about the way to a woman’s heart is through her kids – or something like that? Anyways, after I got done mowing the grass, I went and started the raking of leaves. I remembered how much fun it was when I was younger, to rake up the leaves in a big pile and proceed to jump into them not knowing how soft the landing might be! So I shared that moment with Charlie and I knew right then I had no choice but to marry Jennifer and make Charlie my son.

It was about a year later that Jennifer and I were married. What I didn’t know at the time, was that Charlie had actually gone to Jennifer and asked her if it was okay to call me “Dad”. The choice was his, and he made it on his own. From then on, I was known as Charlie’s “dad”. I didn’t totally realize the implications of being Charlie’s dad at the time, but as he has gotten older and progressed into the later stages of his disability, I realize that even now, I wouldn’t trade being Charlie’s “dad” for anything in the world.

What now…

Biological dads of sons with Duchenne Muscular Dystrophy have no choice in the matter – I did have a choice. Jennifer asked me often before we got married if I was sure that I wanted to take this on. Always looking at the glass half full, I repeatedly said “absolutely”. Even to this day, especially when we’ve had a day with Charlie that was not the most enjoyable, she will tell me that if I want to go, she will let me leave. I always look at her in bewilderment, and wonder why she would tell me such a thing. I am in this for the long haul. There is no disability in the world that would ever be reason enough to leave my family. Charlie could have been a normal kid and been in a car accident at 17 and been paralyzed from the neck down. Would I leave because of that? Charlie could have been diagnosed with cancer at 10. Would I leave because of that? The answer to all those questions, is a resounding “NO”!!

I love my life and I love my life with Charlie in it. Actually, with all the events that have been happening to Charlie this last year, I realize that this is HIS world, and I am just happy to be living in it. But those are stories for a later time.

I am looking forward to writing more about my life with Charlie – the good, the bad and the ugly. I just want to make sure that what I write, will mean something to all the other dad’s out there that have a son with DMD. What I write might even have an affect on dad’s who have kids with other disabilities, but I want to make sure that dads that have sons with DMD, never feel alone or feel that they don’t have an outlet to express what they are dealing with every day. This blog is a journal of my journey with Charlie, but through it all, I want other dads to realize that there is hope for a cure. You might be a dad looking at the glass half empty, but I’m taking it upon myself to make sure that you get a new glass.

More to come…

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Comment by Prakash on January 18, 2015 at 4:16pm
Well written Kurt. I appreciate you sharing this. You made an amazing choice.

Comment by Andrea Cleary on January 17, 2015 at 8:14pm

Thanks for choosing Charlie. I enjoyed your blog entry, looking forward to more.


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