Monday, June 8, 2009


The real test of a man is not how well he plays the role he has invented for himself, but how well he plays the role that destiny assigned to him.-- Jan Patocka

This is one of my favorite quotes, and I’ll tell you why. My first son, Jared was born with a very serious congenital heart defect called transposition of the great vessels. It’s where the two main arteries of your heart are switched and that combined with a series of holes in his heart meant that the chances of Jared surviving were not strong. I came home from the hospital after having him and was in a great state of depression. I had one of those calendars where you flip each day and there’s a new quote. This was the quote that was up on the day I came back from the hospital. And a lightbulb went off in my head. This was truly, a turning point in my life.

The real test of a man is not how well he plays the role he has invented for himself, but how well he plays the role that destiny assigned to him.

You see, my whole life I had thought about getting married and having babies. You know the whole “white picket fence” thing. When I found out I was pregnant, me in all of my “type-A” glory starting planning every moment. Yes I was one of those women that had my bag packed for the hospital two months early “just in case.” I couldn’t handle the thought of anything going wrong or, heaven forbid, not according to plan. My plan.

I couldn’t wait to have my baby via a totally painless birth, bring him home to his pristine and perfectly decorated room, put him in darling little outfits (that he would never spit up or poop on), sit around and coo at him all day long (and look fabulous doing it) , and then sometimes take him out to show him off in his $300 stroller while I shopped at Ann Taylor again because I immediately fell back into my size 2’s.

This is the role that I invented for myself. NOT the role that destiny assigned to me.

Insert lightbulb here.

I realized at that moment, that you know what? No matter what happens, no matter how this plays out, whether Jared made it or not, this is the role that destiny assigned to me. No longer was this about ME, but this was about my life as Jared’s mother. And I stopped crying and I pulled up my bootstraps and I got to work. I got to work figuring out what I was going to do to be a part of the solution. “Destiny” or “God” or “The Fates” or whatever/whoever gave Jared to me because it is my destiny to be his mother. We were destined to be together. He was destined to change me and I was destined to change him.

So what does this have to do with autism? This blog is, after all, called “April walks with autism,” so I better stick to the point.

The point is, that I never would have realized in my wildest dreams that going through what I went through with Jared was given to me in order to prepare me to be Luke’s mom. Each challenge, each struggle, prepares you for what could be the greatest fight of your life.

I was a maniac when I was pregnant with Luke. In fact, I thought long and hard about not getting pregnant again because I didn’t want to put another baby through everything Jared went through. But in the end, we obviously decided to have another baby and I was a complete freak about getting ultrasounds, fetal echocardiograms, etc. I wanted to know exactly what I was up against.

Ha ha ha ha ha ha ha ha ha ha ha ha ha ha ha

I cried for exactly one hour when “they” came out and told me something was “wrong” with Luke. And then I pulled up my bootstraps again and remembered….

The real test of a man is not how well he plays the role he has invented for himself, but how well he plays the role that destiny assigned to him.

This is the destiny that was assigned to me. Time to be a part of the solution.

I never thought I would have it in me to be the parent of a special needs child. But once you accept the fact that there are certain things you cannot change and embrace those things with open arms, you are a lot stronger than you give yourself credit for.

Some days are ugly and full of tears and sweat and blood and vomit and puke and poop and self doubt and screaming………. but…… it’s still your fight and it’s always your destiny.

I’m not much of a religious person, OK I’m not “any” of a religious person, but this……. It just speaks to me on so many levels.

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

For the record, Jared is 8 years old and growing strong. He had extensive testing just last week where docs looked at his heart via 3-D imaging and it looks GREAT.

And Luke? Well he’s a 5 year old with autism who loves to swim and run and jump and play and read books and sometimes scream and eat really particular things and have strange quirks, and not wear pants very often, and fixate on things and mostly laugh hysterically ………… but I’m pretty sure

that’s his destiny.


Myra McEntire said...

You know how much I love you, right? You know you're amazing, right?

You know you have a (I believe) God-given gift, right?

Just checking. And today I wrote about Edward on a Stick.


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