A Wonderful Day

Just spent the day with my cousins and my mom. My cousin Kris treated us all to a girl's day out. We saw Mama Mia (which was fabulous and much funnier and raunchier than I remember from the last time I saw it) and then dinner at Mortons. While we were there, dining on the most superb meal, the waiter gave me the nicest compliment! It was so unexpected, and made me feel so good! You just never know how the words speak can affect someone, but they can and they do. So, thank you to Rudy, our waiter, who made me feel beautiful. And a HUGE thank you to Kris , my cousin and one of my most cherished friends, for taking the time to make a special day for all of us. I love you girl! Don't know how I'd get through this life without you.

Big Boy Bike

Over Spring break, Nicholas mastered riding his bike without the training wheels! He was pretty excited, so we celebrated by taking him out and getting him a new bike - which he sorely needed anyway. His old bike was a present for his 5th birthday, and he's now 7 and a half, and he's about a foot taller, if not more so. He really was getting too big for that bike. So anyway - Here are some pictures of Nick - on the old bike when he took off the training wheels, and of the new bike, complete with snazzy new safety helmet! As an aside - Look at how short his pants are! I desperately need summer to get here so I can put him in shorts! I cannot afford to buy him pants again, at the rate he grows! He's only 7 and he's already outgrown the 8s, by a couple of inches! Oy.

One of the Scariest days of My Life

Two days ago, we got the boys up and started getting them ready for school when we found bruises all over EJ. There was one on his cheek, one on his chin, three on his belly and chest, 3 or 4 on his back, a few on his bum, and too many to count all over his legs. They were all uniform in appearance, and appeared out of nowhere. Robert and I panicked. We called and got him an appointment at noon. Neither of us would say what we were thinking, but we were thinking the same thing: Leukemia. We know bruising is one of the first signs, and we are always on the lookout for signs in Gabe. Leukemia strikes kids with DS at a rate 20 times greater than the typical population, so we are mindful of what to look for and if we saw symptoms in Gabe, we'd be prepared to deal with it. But not Elijah. We were completely caught off guard to see those bruises on our little tough guy.

I took him in, and the pediatrician was concerned as well, though she suspected another culprit, a blood disorder called ITP, which is not very common. She sent him immediately for blood tests and told us we'd have an answer by the end of the day. I took him to the lab and held him while they took his blood. He was such a trooper! He whimpered a little, but no screaming or crying. He really is a tough little guy. Then we went home and waited. Robert had come home to pick up the other two from school, but he was too nervous to go back, so he stayed home and we passed the time researching things on the internet (bad idea), playing with the kids, and I personally consumed about two dozen chocolate chip cookies (worse idea). (I am so not going to weigh in at my WW meeting this week.) It was the longest afternoon I can remember. The pediatrician finally called around 4:30. The good news is it is not leukemia, it is not ITP, and it is not anemia. Thank you God! The minor bad news is that we have no answers. The doctor wants us to keep an eye on him, and if the bruises appear again, or he has any other symptoms, to bring him back in. For now, we'll chalk it up to a freak incident and be grateful for his health. In retrospect, I have to say . . . it's just like him to give us this kind of stress. You can see it in his smile, he's a trouble maker! I'm tellin' ya, this kid is going to give me more grief over the years, heaven help me when he hits the teens . . . of course, I'll just be thankful I have him around to complain about.

NCAA CHAMPIONSHIPS!!

Anyone who knows anything about me will tell you, I am a true blue-and-gold blooded Bruin. My Bruins are playing in the Final Four again (no surprise there) and if all goes as it should they'll be crowned the victors come Monday night. What is especially exciting about this Final Four (besides having all #1 seeds) is that Kansas is also in the Final Four. Most of my husband's family is from Kansas and my father-in-law is a huge fan, so the possibility of a Kansas-UCLA matchup in the championship game is very exciting. So, in honor of my father-in-law, Bob, I thought I'd post some pictures of my baby Bruins sending the Jayhawks some support . . . for today only, of course.

World Autism Awareness Day

Today is the first official "World Autism Awareness Day" as decreed by UN resolution 62/139 and is one of only three official disease-specific United Nations Days. In honor of this day, I just wanted to share some facts about Autism:
* Autism is the fastest-growing serious developmental disability in the world.
* There is no medical detection or cure for autism, but early diagnosis and intervention improve outcomes.
* There is no credible medical evidence linking vaccines to Autism.
* 1 in 150 children is diagnosed with autism.
* 1 in 94 boys is on the autism spectrum.
* 67 children are diagnosed per day.
* Autism costs the nation over $90 billion per year, a figure expected to double in the next decade.
* More children will be diagnosed with autism this year than with diabetes, cancer, & AIDS combined.
* Autism receives less than 5% of the research funding of many less prevalent childhood diseases.

Texting the Easter Bunny

We had a low key Easter this year. I realized the day before that I had neglected to purchase an egg dying kit, so Nick and I went shopping to get one. An hour and three stores later, we came home empty handed. So, we just used food coloring, and were pleasantly surprised to find that food coloring works much better than those silly kits. So now I don't have to worry about wasting that money every year. The night before, we put together the Easter baskets, filled the plastic eggs and ventured out in the cold night to hide them all. The next morning Elijah was up at 6:30, Nick at 7:00. So much for sleeping in. After the baskets, the second thing Nick noticed was the plate of eggs we had colored the day before, and he was rather distressed that the Easter bunny hadn't hidden them. I suggested that EB had hidden eggs with candy in them, but Nick was INSISTENT that EB is supposed to hide the eggs we left out as well, and he recounted with great clarity how EB had hidden all the dyed eggs in the living room and playroom the last time he was here . . . two years ago. (Last year we were out of town staying at a hotel on Easter Sunday). His memory scares me sometimes. We had in fact hidden the eggs in the house that year because it had been raining. So, we distracted him from his dismay with the egg hunt in the backyard, with a visit from Grammy & Papa, with a movie in the afternoon. And when it was time to get ready for a bath, Nick says "But Mom, the Easter Bunny hasn't come back to hide the eggs yet! When is he coming?" He was fairly upset about it at this point. This is part of living with Aspergers - routine and structure are of the utmost importance - any deviance from the expectation is met with great consternation. Thank God for modern technology. I said "I'll text the Easter Bunny right now, and I'm sure he'll come while you take your bath." So I sent a text message, and I let Nick see me type and send it (to my girlfriend), and he was quite relieved. Robert managed to corral all three of them in the bath, and closed to door while I made quick work of hiding the colored eggs around the living room and playroom. My very confused girlfriend called me just as I was going into the bathroom to signal Robert, so I enthusiastically greeted her with "Hello Easter Bunny! You did? Oh thank you Easter Bunny!" So the boys got out, got on their PJs and came out for one last egg hunt. Nick was so happy and excited. I just love seeing the look on his face at times like that. At his age, so many children have figured out the myths of Easter Bunny and Santa. Not Nick. He still believes wholeheartedly. I am hopeful he will hold on to that innocence for a couple more years, because it is such a wondrous thing to see, when children light up over their belief in the impossible. It's the very foundation of faith - believing without a doubt that which you cannot see. I hope that they never let go of that ability to believe - in anything.

Here are some pictures from the first egghunt:

Welcome to Holland

The following poem was sent to me, by a few people, when we first got the diagnosis on our Peanut. I have since shared it with others going through the same heartbreak. If you have a child with special needs, I'm sure you know this piece well. If you don't, and you haven't had the pleasure of reading it yet, I hope you enjoy it. It was written by Emily Perl Kingsley, a mother to a child with Down Syndrome.

I am often asked to describe the experience
of raising a child with a disability --
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel: It's like this...

When you're going to have a baby, it's like planning
a fabulous vacation trip -- to Italy.
You buy a bunch of guidebooks and make your wonderful plans.
The Coliseum. The Michelangelo David. The gondolas in Venice.
You learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands.
The stewardess comes in and says, 'Welcome to Holland.'

'Holland?!?' you say. 'What do you mean, Holland?
I signed up for Italy! I'm supposed to be in Italy.
All my life I've dreamed of going to Italy.'

But there's been a change in the flight plan.
They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease.
It's just a different place.

So you must go out and buy different guide books.
And you must learn a whole new language.
And you will meet a whole new group of people
you would never have met.

It's just a different place.
It's slower-paced than Italy, less flashy than Italy.
But after you have been there for a while and catch your breath,
you look around....and you begin to notice
that Holland has windmills...and Holland has tulips.
Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...
and they're all bragging about the wonderful time they had there.
And for the rest of your life, you will say
"Yes, that is where I was supposed to go.
That is what I had planned."

And the pain of that will never, ever, ever go away...
because the loss of that dream is a very significant loss.

But...
if you spend your life mourning the fact
that you didn't get to Italy, you may never be free
to enjoy the very special, the very lovely things...
about Holland.

I'm Just Like You

I am the mother of three boys. Though I think my boys to be remarkable, all for their own unique reasons, I don’t think I am a particularly remarkable mom. I have good days and bad days. Some days I think do a great job, others I am not a good mom at all. I think that makes me fairly typical. My kids, on the other hand, they are not typical. My oldest has Asperger’s, not something that is immediately apparent just by looking at him. My middle son has Down Syndrome, which is immediately apparent. My youngest, so far only has a serious case of bad-attitude-itis, earning him the nickname Diva, but he does show some of the sensory “quirks” his oldest brother had as a toddler, so the jury is out on whether he falls into the neurotypical camp or not. Having two kids who are different than the standard “norm” certainly presents some challenges that other parents don’t have to face, and we have been though our share of tears and frustration. But at the end of the day, we are just like any other parent. We are proud of our kids’ accomplishments, we hurt when our kids hurt, we get frustrated when their behavior challenges us. So it always catches me off guard, and makes me feel terribly uncomfortable when friends or acquaintances tell me what a great mom I am, or how special I am. They seem to believe that because I have been thrown a few curveballs in having to deal with “special needs” that I am somehow a superior parent. I’m not. Most of the time, I feel wholly inadequate to the task, and think God made a huge mistake by entrusting their care to me. So when people feel like heaping me with praise, I feel like a complete fraud. The truth is, I’m not doing anything that any other mom wouldn’t do. I did not volunteer for this job, it was given to me. So, like any mom would, when illness or emergency or other challenges come, I steel myself, and care for my kids. We all do what we have to in order to keep our kids safe and healthy and happy. My situation may require a bit more energy, and sometimes greater emotional resolve, but I know any other mom would also find the strength they need, if they were in my shoes. It’s what moms do. My kids are special, in many ways and for many reasons. I’m just a mom who loves them more than life itself. Just like most moms.

What is so Wrong About Reverend Wright?

I admit, when I first heard the snippets of sermon that have caused such outrage this last week, I too was taken aback, and greatly disappointed that Senator Obama held someone like this in such high esteem. I certainly wasn’t going to defend Mr. Wright, though I wanted to defend the Senator. So, I did what any political junkie would do, and I looked into it, and read as much as I could to find out what this Reverend and his views were all about. And the more I read, and the more I dug, the more I came to realize, the outrage isn’t in what this man said, it is in the meaning being assigned to his words by outsiders who don’t want to hear the truth of his message.

The totality of Wright’s sermons, indeed of his life’s work, has been to bring positive change into the lives of those in his community. His theology is one of social justice. The words at issue, though angry, are not false in taking our nation to task for its failures. The very foundation of social justice theology, as I have come to understand it, is not to take for granted that we are blessed as a nation by God for our greatness, but to hold the nation accountable for its faults and prod it to work harder to earn God’s blessings through greater works. When Wright chastises America for its social failings, he is upholding a long tradition in social justice theology, a tradition upheld by Frederick Douglass and Martin Luther King, Jr. Those who would argue that Wright is the opposite of everything MLK stood for should go back and read King’s speech from April 1967 – an admonishment of our government and our policies of war in Vietnam. Replace Vietnam with Iraq, and imagine Wright speaking that sermon today. I’m sure the outcry would be immense.

And what of his comments about AIDS. Certainly on their surface, they seem absurd, and it would be easy to write him of as a crazy America hater for believing them, when again, they are taken without context. Consider then that for forty years, our government did indeed conduct a heinous medical experiment on black men in this country, an experiment that led to unimaginable suffering by these men, and their wives and children. The Tuskegee Experiment continued until the early seventies before it was finally exposed and brought to an end. It was less than ten years after the end of the Tuskegee Experiment that AIDS raised its insidious head. With that heinous experiment so recent in our history, is it not then reasonable that some would cast a suspicious eye toward our government? Had I been old enough to understand, I would have thought it possible that my government was involved. Had I been raised with Mr. Wright’s generation, I would have thought it not just possible, but probable.

Actions speak louder than words. We have been exposed to a handful of sound bites, which people are willing to use to condemn a man, and label him hateful and unpatriotic, but his actions do not support that assumption. Over his forty year career, Reverend Wright, and his congregation have brought enormous positive change to their community. Action speak louder than words. Look not to the pieces of words, but to the works they support. For all the anger and offense of those incomplete pieces of his sermons, the effects are something to be praised, not condemned.

So what about Senator Obama? I admit I did not vote for him in the Primary. But after this week of outcry and accusation, and after looking for and reading more of what his pastor preaches and what he has done, I can say I unequivocally will vote for him in November. This firestorm, and his response, has convinced me that this is the kind of leader this nation desperately needs. Barack Obama is the antithesis to everything we have grown accustomed to in a government. We have lived with dishonesty, corruption, division, secrecy and abuse. Here is this man who is open, honest, and forthright. He has responded to all of this with uncommon grace, intelligence and honesty. Policy differences aside, everyone can see this is a man of character, integrity and true moral fiber. His opponents fear that and they have done their best to damage his character, because policy differences alone won't defeat him. What this nation needs is a leader who will bring respect and dignity back to our government. His opponents see that and fear it, so they tear him down, label him a racist and an America hater. America haters don't subject themselves to scrutiny in order to run for President. America Haters mail bombs and blow up federal buildings. There is nothing in Senator Obama’s life that justifies the labels being cast upon him. Not one word he has uttered, nor words he has written, not an action in his life invites the disparagement. He lives the social justice theology which his pastor preaches. This is the kind of leader I want to have representing me and carrying our country.

The Smile

I’m standing in the kitchen with my husband at midnight, when I hear the telltale shuffle of feet in the hallway. In comes Gabriel, my sweet little peanut, all bleary eyed, looking for someone to cuddle. So I scoop him up, he wraps his arms around my neck and I carry him back to bed. “Do you want mommy to cuddle?” I ask, knowing he does, but wanting to hear that innocent soft “Yethhh.” So I lay down with him in his bed. We face each other, I lay on my right side, he on his left. I wrap my arm over him, and facing me he puts his palms together and tucks them under his cheek. We look at each other and he gives me that huge grin of his, the smile that could power a city. Gabriel has THE most charming, engaging, heartmelting smile. It is his biggest defense when he knows he’s been mischievous. His teacher often laments that Gabriel is hard to discipline because he is SO charming and he knows exactly how and when to wield that smile.

Gabriel is four years old now, in preschool, and still adjusting to life as a middle child. His baby brother, Elijah, is almost a year old, and despite the (now mutual) jealousy, they are starting to get along. Gabriel has even begun to show affection toward the Mommy-stealer!

I can’t believe how much Gabriel has grown since he was a toddler. He started walking just before he turned three. At almost the exact same time, we discovered he loved to dance. Pregnant with Elijah, I was miserable and sick, and not a very attentive mother. So I put movies on for Nick and Gabe whilst I languished on the couch. After a couple of weeks, I grew rather weary of all things Disney, and forced the kids to watch something I liked, and I chose “Singing in the Rain” with Gene Kelly and Debbie Reynolds. Gabriel LOVED it! He was absolutely enthralled with all the music and dancing! He very quickly began imitating the dancing, especially the “Make ‘em Laugh” routine by with Donald O’Connor and Moses Supposes His Toeses are Roses! He must have watched that movie a hundred times over the next couple of months. We eventually moved on to Wiggles, and he quickly memorized all of their dances, and would do them when we played the music CDs! So, after Elijah was born, when Gabe was about three and a half, we enrolled him in dance class. He takes tap and ballet, and he is an absolute star in the making. He had his first recital and he was the only one who didn’t forget the steps, or get stage fright. The music started and he just started dancing! At his second recital, he didn’t miss a step, despite a too-large top hat falling down over his face, forcing him to essentially dance blind. At the end of the dance, he rightfully took the biggest bow! He has such a passion for dancing. I pray he never lets that go.

At the moment, Gabriel’s biggest challenge is his language development. He loves to talk and tell us stories, but he cannot quite form the words just yet. He does have a vocabulary of about 50 words, but they are words only his father and I understand. Box is “bothh”, Fries are “whiiithhh” Please is “weeth” I just know that when the words do come, he will be a great storyteller. He is so animated and excited when talking to us. He has the BEST facial expressions, especially when he’s looking at us like we’re dense. My favorite, of course, is the smile. Always, the smile.