Saturday, May 29, 2010

Walking in my shoes...

I've always loved to read. I'll be honest and tell you that my favorite author of all time is Steven King - surprising I know considering what a big scaredy cat I am - but it's true. His descriptive writing just completely sucks me in every time and I find myself sitting at 2:00 a.m. unable to put the book down even though I'm sitting with all the lights on, completely terrified (maybe that's why I haven't read any of his books lately...I need my sleep too much). But I also love the typical "chick books." Janet Evanovich's Stephanie Plum series is definitely a guilty pleasure. This series has adventure, laugh-out-loud humor and a ton of totally hot romance...a nice escape for any 35-year-old mother of two.

Unfortunately, even though I love to read, I don't get to indulge nearly as often as I would like because of my insanely hectic lifestyle. So when I do decide to read these days I have to make sure it is worth my time. I received House Rules by Jodi Picoult as a Mother's Day gift and so far I have not been disappointed. Without giving too much away, the story is about an 18-year-old boy with Asperger's - a high-functioning form of Autism. He is a senior in high school and still lives with his mother and younger brother...oh, and by the way, he's being charged with murder. First of all, let me say that I am a huge Jodi Picoult fan. I have read many of her books and love her writing style. This book is no exception, but it hits a little too close to home. I am only half way through the book and have already had to put it down many times because of the emotions it has evoked in me: sadness, frustration, fear...

As the mother of two children with autism I can't help but internalize this story. Picoult has done her research, because this boy is not just a combination of stereotypical autistic traits, but I can picture him in my mind and see him as a real person. Sometimes he reminds me of my son - sometimes my daughter - sometimes of a friend's child I know with Aspergers. But most of all, she has really hit on the fears that we mothers of children with autism feel. What does the future hold for our children? Will society ever accept them? Will they ever have friends or feel a part of our world? Are they really happy? Will they ever be independent or will they need us, desperately, for the rest of their lives? These are questions that I have asked myself countless times. What does our future look like as a family? Will it ever - ever - resemble anything normal?

I'm not done yet so I don't know how the book will turn out, but I do know that I can already say I would recommend it to everyone. Not because of the actual story - maybe I'll hate the ending - instead because it can help let people into my world, a world that completely and totally revolves around autism. It may not be a world I would have chosen to live in - but it is a world, unlike the mother in this book, that I fight daily to live in and not just survive. Like a lot of mother's of children with autism, she has no joy in her life and is just barely making it through the days. Autism has taken a lot from me, but I refuse to let it steal my happiness no matter how hard I have to work to create it.

Sunday, May 23, 2010

Count Your Blessings...

Jesus, bless me while I sleep tonight. God bless Mommy and Daddy and Will and Jessica, Nana and Poppy and Grandma and Grandpa, my aunts and uncles and cousins and all my loved ones. God bless all those that are in pain and suffering. Please help me to go right to sleep and to have a nice long peaceful night’s rest and help me to always be a good little boy/girl. In Jesus name I pray…Amen.

Every night I say this prayer twice - once with each of the children while they lay tucked snuggling beneath their blankets. I have recited this prayer to them from the day they were born, recently adding a pause at the end so they can say “Amen.” While I am sure they value the structure of saying this prayer just before going to sleep, I am equally sure that I am the real beneficiary here. Each night, it reminds me of all the blessings that we, as a family, have in our lives. Our family is blessed with a Mommy and Daddy who love and support each other; a son and daughter who bring joy to everyone who meets them; grandparents who are an active and positive piece of our lives; an extended family who is supportive and caring; and teachers, therapists and doctors who genuinely care about the children’s future. That is a lot of blessings. Life with Autism can be so overwhelming and hectic that we forget to stop and think about just how blessed we are. I am blessed. Blessed to have children who continue daily to amaze me with their strength and inner peace. Blessed to have a husband who never fails to make me laugh even on the toughest of days. Blessed to have family and friends whose faith in me gives me strength to get up each day and face life with an optimistic heart. Let me say it again...I am blessed.

It seems so simple and obvious, right? I mean, who isn’t grateful for the blessings in their life? But it is often harder than you would think. There are days when I am so overwhelmed with the heartache of Autism that I feel angry at God for giving my children such life-altering struggles. Why them? Why me? On really bad days these unanswerable questions can overshadow all the blessings that I take for granted daily: my children, family, friends, dedicated therapists and doctors…none of these are guarantees, and it is important to remember that.

So yesterday we went to my parents' house in the morning because my brother and his son, Woody, were visiting while his wife was out of town. I was holding my adorable nephew when Will came into the room swinging his Slinky Poptube wildly about. I said: "Will, say hi to Woody." Will stopped. Looked closely at his 9 month old cousin - smiled the most precious smile I've ever seen - leaned in slowly - gave Woody a soft kiss on the cheek and another little smile filled with love - and then went on his happy way. I thought we were all going to melt...what a special moment. I took a snap-shot in my head to pull out on tough days when I'm feeling frustrated by Will's struggles. This moment was a victory.

The hardships are obvious – you don’t need to look for them – but don’t miss the many blessings – they are there.

Thursday, May 20, 2010

Take me out to the ball game

For as long as I can remember I have loved baseball. Although there are many other sports that I enjoy watching or playing, baseball is by far my favorite. I love its rich American history; its competitive, yet non-violent, game play; and most of all, the feeling I get when I'm sitting in the stands, on a beautiful afternoon - hot dog in hand - cheering for...whomever. I really don't care usually - I love the sport more than any one particular team - I just cheer for which ever team Bill is rooting for.

Naturally, when Will was born I envisioned a future filled with T-Ball, little-league, high school games, and maybe even college. What can I say - I'm a Mom - we dream big for our kids. When Will was only a few weeks old one of my brothers bought him his first baseball mitt. It was precious and it sat on his dresser for years, waiting to be used; until one day it became too small and the realization that it was never going to be used became too big.

It may sound silly, but of all the things Autism has stolen from me, this is one of the saddest. I know it isn't sad for Will; he doesn't even know what he is missing...but I do. I know that sounds selfish. He is the one tormented by Autism - not me. He is the one that will have to struggle with it for the rest of his life - not me. He is the one who has had his childhood robbed away from him - not me. But I can't help it. I drive past a baseball field and I see all these parents watching their children play and I'm jealous. I wonder if they know how lucky they are.

In the scheme of things, I know it is just a game. Rational Katie knows that it is silly to be sad about something so trivial when there are life-altering problems to deal with, but still, when I drive past a diamond and see all those little squirts with their way-too-big-baseball caps, I can't help but feel a little jipped.

This winter I decided I wasn't going to completely give up on baseball. I was looking at pictures from the previous year and saw a bunch with my brothers playing catch in the back yard at a family cookout. I thought - Will could learn to do that. I put a baseball mitt on Will's birthday list in February and he got one. It has been sitting on his dresser waiting for summer. He may never play on a team like I envisioned, but I would love to be able to one day say: "Hey Will, go get your mitt, Mommy wants to play catch."

Sunday, May 16, 2010


Resentment or grudges do no harm to the person against whom you hold these feelings but every day and every night of your life, they are eating at you (Norman Vincent Peale)

As I've blogged before, I am a very passionate person. I feel all emotions with an intensity that is, at times, almost overwhelming. Hurt and anger, are no exceptions. I have worked really hard at being the kind of person that can just let things roll right off of me, but there are times, justifiably so, when I can't keep these feelings at bay. Unfortunately this happened this week. You've already read my previous blog and some of you have sent some very nice messages of encouragement - thank you. I got my feelings hurt by someone I love - the details are not important. The point is...we have worked through it. The thing about "hurt" and "anger" is that if we don't allow ourselves to forgive the person who invoked these feelings, they will grow stronger and stronger until they consume us. Resentment is an ugly thing. Holding grudges is even uglier. Forgiveness is liberating because it allows us to truly release the hurt and anger that we feel.

I'm not saying that we should all be a bunch of push-overs and let others trample all over our feelings...quite the opposite. There are times when anger is warranted and so is an apology from the person who provoked you. But...once that sincere apology is received...LET...IT...GO! I try to live my life this way and I know that it benefits me just as much as the person I forgive:-) So, I don't feel deeply sad anymore - today I feel happy.

Thursday, May 13, 2010

I am deeply sad today

When did it become so important to share one's opinions. Especially if those opinions are malicious or hurtful. It seems, in our society, that we encourage people to pass judgement on others and point out all the ways that they are better than the other person. We view this as witty or clever. Why? Why do we feel the need to spread such ugliness? I'm not saying we should live in the land of Mr. Rogers, but there is a big difference between pointing out real injustices in the world: child abuse, poverty, racism...and taking cheap shots at other people to make us feel better about ourselves. There is just so much ugliness in the world - why add to it. Why can't we just lead by example - live our lives as a testament to the beliefs that we hold dear - let our actions speak for us.

I am deeply sad today

Wednesday, May 12, 2010

Here's the thing about having a is great when you have great anecdotes or philosophies about life to is NOT great when you let it go for a while and it just looms over your head. The longer you go without blogging the more convinced you become that your next blog must be a GREAT one. So, I've let this pressure build for too long & I've decided to just get it over with and blog something so I can move on and start blogging again on a regular basis. Drum roll please.....

Yesterday afternoon, I had just gotten behind the wheel of my car and turned it on when a sweet little voice came from the backseat and said clearly: "Oh, Mommy I can't see. The window is all f*cked up." Visual jaw drop! I spun around in my seat quickly and calmly asked: "what did you say?" Again Jessica said: "It's all f*cked up - use the wipers to fix it." I paused and looked at the windshield...fog...she meant fogged up. "Fogged up sweety. The window is fogged up." "Yes, it's fogged up - use your wipers Mommy- I can't see."

Kids say the best things.