Saturday, June 20, 2009

Don't sweat it!

Before kids, I was one of those people who liked things, “just so.” A place for everything and everything in its place. I was, what you would call, “anal.” In general, I am a very detail oriented person. And a planner. So I like to plan everything down to the very last detail.

And then I had kids.

And I tried it for awhile, I really did.

When I had one child, it could sorta manage it. I mean he would nap and I could tidy up. We weren’t outnumbered yet. And then I had #2 and….well now things were technically tied up but in reality the energy of two boys wayyyyyyyyyyyy outnumbers the energy of 2 grown ups. And then Jared started to get a bit older and get into stuff (read: needed to be chauffeured everywhere) and Luke got diagnosed with autism (read: needed to be chauffeured everywhere, too) and then I got a part time job and then I started doing all kinds of volunteer work at the school and with Autism Speaks and sometimes I even throw in a minute to craft and if I’m lucky I sleep in any given day. I mean, sometimes I even make dinner.

Most days I think to myself, “If someone were to just drop by for a visit, I would cry.” Because usually you can’t even find the floor in my house. I’m not even kidding. It’s that bad. Laundry piled to the ceiling (clean or dirty), dishes in the kitchen (clean or dirty), books, papers, magazines, school work, bills, etc. I mean the office is a wasteland. I do have standards when it comes to the bathroom and praise God for the invention of Clorox wipes because at least I know that my toilet and sink can be sanitized in under a minute. Phew! I won’t even discuss my bedroom which is, in my house the room where everything gets dumped/hidden until I can, “deal with it later.” And later is a long time from now.

But the reality is, you have to pick your battles. And this just isn’t my battle right now. It can’t be. When it comes down to making the decision of spending time with my kids or mopping the kitchen floor, I’m going to pick my kids every single time. I have a child with autism. He requires a lot of attention and a lot of time. Guess what? That’s the greatest investment of my time I could ever think of. I know deep in my heart that one of the reasons that Luke does so well is because I have devoted so much time to him and his therapy and his recovery. And I don’t just mean driving him around. I mean getting down on the floor with him and doing the work. I mean pushing him for his words when he doesn’t want to use them and I know it’s going to make him scream even louder but we do it anyway (and it pays off almost every single time). I mean sitting with him outside while he jumps on the trampoline and swims in the pool and gets his gross motor stimulation so that he is more receptive to learning when we come inside. I mean deep frying gluten free french fries 12 times a day when that’s all Luke will eat. I mean squeezing his legs until my hands hurt and he’s laughing hysterically because the deep compression makes him feel better. And yes, I mean the quiet moments when we read stories at the end of the day and once in awhile I even get a cuddle.

At the end of the day……… no really, at the end of the day, my days, I don’t want people to say, “Wow, April really kept a clean house, April really knew how to plan a party down to the last detail, April always kept her van really clean.” What I pray that people will say, “Wow, April led a great life. She raised great children, she gave back, and she made a difference. She was a great friend, a great liver of live, a great wife, and a great daughter,” and God willing my own children will say, “she was a great mother.”

In the big scheme of things, no one will ever remember what kind of food you served at your party, as long as they had fun. No one and I mean NO ONE will remember how many days you didn’t shower before you dropped your kid off at school. NO one will remember the day they stopped by your house for a great cup of coffee and even better conversation and you had piles of laundry on the floor. No one will remember, or for that matter even notice that you wore pajama bottoms on an emergency run to Target.

When we went to Atlanta a few months ago, we were meeting a very dear friend of mine from college that I hadn’t seen in 10 years. I really wanted to make sure we all looked our best. OK, just clean. When we left for Atlanta in the morning, Luke did NOT want to get dressed. Fine. I threw the clothes in the van and figured we’d just change his clothes on when we arrived. I was desperate to just get on the road without a fight. We made a pit stop along the way and I managed to get Luke into his shorts and shoes. Phew! More than halfway there, but he was still not willing to put a shirt on. He was pretty enthralled with the skateboard on his jammies. Ok, don’t panic, we still had 2 more hours to go. We arrive in Atlanta, just moments before we are about to see Rick and once again, I attempt to put Luke’s cute, and clean shirt on. He was not having any part of this. And he was screaming about it. And not only was he screaming, he was using his words and making beautiful sentences like, “I want skateboard shirt! I don’t want fishy shirt!” So my choices are ~
a) continue to argue with Luke until the screaming and the fits escalate into pure ugliness and this puts everyone in a horrible mood for walking around World of Coke
b) force the shirt on him by literally pinning him down and wrestling the shirt *I* want on to him or
c) see picture to the right

And guess what? Rick never said, “Wow, check your kid out, he’s wearing a pajama shirt! You are a horrible mother!” And ya know what else? I posted the pics on facebook and this blog and no one wrote me a letter in horror about the fact that Luke was wearing a pajama top, in fact, I’m pretty sure, no one even noticed.

Don’t sweat the small stuff, and it’s ALL small stuff.

The only one stressed out about Luke’s shirt ~ was me.

And guess what? The Mc Donald’s cups and the crumbs and the stray French fries will be in your van tomorrow. The dishes? Sorry but they’ll still be there tomorrow and they’ll be more crusty then they are today. And unfortunately, the laundry fairy isn’t showing up anytime soon. But your kids, they are right here, right now, and you’ll never get this moment back again.

And maybe it’s a teaching moment, and maybe it’s a silly moment, and maybe it’s a loving moment, and maybe it’s just……….. a moment. But it’s yours to cherish. It’s yours to make of it what you will. And that is the greatest gift you’ll ever be given.

So yes, eventually we make time to clean the house and tend to the details and sometimes it even gets done all at once and by that time we are so tired that all we can think to do is pass out, but in reality~

Don’t sweat the small stuff, and it’s ALL small stuff.

And that’s easy for me to say, because I’m on vacation right now! =)

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.