Our Hot Rod Lincoln

Mile 24.5

2011-10-31T02:58:00.000-05:00

Well, as you all know by now, I completed my first big race on Saturday. 13.1 miles. It was an incredible (if painful) experience, and I am still a bit in shock that I actually did it. The course was a lovely shaded route along the Guadelupe River in New Braunfels, and was set up so that you would turn around at the half way point of your run and finish in the same spot you began. This may be standard practice, but what do I know, I'm a novice at this stuff. The half marathoners like myself turned around at 6.5 miles, and the full marathoners (or crazies, as I like to call them) turned around at 13 miles.

Along the way, signs marked your progess: Mile 1, Mile 2, Mile 3. On the way back, though, the mile signs showed only the full marathon mileage, so when we passed mile 8, the sign actually said Mile 21. I guess they figured us half marathon folks still had our wits about us enough to do the math, but the full marathoners might not be coherent enough for subtraction. Or maybe they just wanted to make fewer signs, I can't be sure.

Either way, I found myself just thinking of my distance in terms of the posted mileage. Ok, I'm on mile 21 now, so I only have 5 more miles to go. It didn't particularly matter to me that I had only personally run 8 of those 21 miles. I was just focused on how far I had left to go.

Miles 22-24 were pretty much consumed with thoughts like, "This is terrible. I don't want to move my legs anymore. This is really taking a long time. Why am I still moving my legs?" Hey, I didn't say I would finish this race full of dignity and grace. I fully expected to limp across the finish line and complain about my aches and pains for two days. The point was not to erase my entire nature, just to finish something that seemed too big for me however I could manage it. So, I'm not ashamed to admit I had some pretty whiny thoughts throughout most of the 20's (or more accurately, around the 10 mile mark for me).

But, when I hit mile 24 sign, I started to have hope. I knew I would have to walk some of the race, but I had planned to run the last 2 miles. I assumed the adrenaline would carry me. In my mind, I had prepared myself for the last 2 miles being the home stretch. In reality, I had injured my foot and couldn't run for more than about a minute at a stretch by the time I passed the mile 24 sign. Still, I was determined to run as much as I could at that point.

Then, something strange happened around mile 24.5. I started to cry, not from pain or exhaustion (though I have no doubt both contributed to the tears). I started to cry because in that moment, when I finally realized I was going to be able to finish the race and I was running through this beautiful scenery and I knew my husband and two sons were waiting for me at the finish line, I was completely overcome by what an amazing life I have.

I have never traveled anywhere exciting, I have a mediocre job with a mediocre income, I am a nobody in a huge city in a huge world of nobodies. Chances are I will never be rich or famous or have a perfect body. But, in that moment, I was so happy to be in my hurting, broken down body, running through the gorgeous countryside, making my way to the arms of the three people whose love gives me strength every single day. I felt like the luckiest woman in the world out there, and I was completely overcome.

And when I made it across the finish line, with a time most folks would be ashamed to see flashing on the screen, I just held my family and cried some more. I accomplished exactly what I needed to accomplish, and I couldn't have been more proud to see those three faces cheering me on at the finish line.

I told myself I wasn't going to talk about the dang marathon again, but I couldn't stop thinking about the moment at mile 24.5. It's so ridiculous because goodness knows I didn't actually run 24.5 miles at all, but I remember it because I had a breakthrough out there I didn't expect. I saw with such clarity that there is nowhere else I'd rather be. I would rather be here in my life with all of its quirks and flaws than anywhere else life could have taken me. All of those dreams I used to have of what my life would be like as an adult were wrong, and what's more, not one of them would have been as fulfilling as the life I ended up living.

I haven't spent a lot of time in my life being thankful for what I didn't get. When an old boyfriend dumped me and a friend said, "Don't worry, God's got someone better out there for you," I didn't fall on my knees and to offer up a thanks-for-letting-my-heart-get-broken prayer. When the store is out of eggs, I don't breathe a sigh that I've avoided salmonella for another day. So, it's pretty understandable that when Linc was born with Down syndrome, though I was sending up prayers left and right, they weren't necessarily of the thankful sort.

And for that, I am sorry because Lincoln has been the most amazing surprise we ever received. I live for that kid's smile, and I could watch his antics for hours. He has probably brought me more laughter than all of the other parts of my adulthood combined. He is sweet and sincere and earnest and full of joy. He has made me a better mother and a better person. I am lucky to get to know him, much less raise him.

I guess you could say I'm feeling pretty lucky in general. I have almost nothing the world considers worthwhile, and yet I have a sense of contentment I never expected. I have two remarkable boys who couldn't be more different but also couldn't be more perfect in their own ways. I have a husband who loves and respects me, who moves mountains for his family everyday, who is an incredible father to our boys, and who doesn't even make us watch football. We have food to eat, clothes on our backs, more toys than we can find space for, and great friends who actually know what's important in life. Honestly, who could ask for anything more?

As always, I have to say thank you to all the folks who follow our public attempts at figuring this life thing out during the month of October. Everywhere we go, we are bombarded with kind words from people who follow the blog. Believe me, we are grateful for every word of encouragement, every person who tells us Linc has inspired them to stop using the *R* word, and every person who takes a few minutes to read about our experiences raising a child with Down syndrome. Chances are, we'll be back next October to do it all over again. Hope to see you all then!

Run Like Linc Is Watching

2011-10-30T02:00:00.015-05:00

This entry is from Linc’s dad, Sam.

I had this entry written already. I wrote it days ago. It was long and philosophical and dealt with the shape of human personalities. Nature and Nurture and rebellion against both. I had a great post written.

And then I watched my wife finish a half marathon this morning.

I decided to chunk the other version and write this instead…

Lincoln is guided by his biology. His whole life he will have to deal with his extra chromosome. He will have to find ways to works with it, and to use it to his advantage. But there will also be days, hard days, where he will have to overcome it.

When Liz crossed that finish line today, she showed him that it can be done.

Liz is beautiful and strong. She is the one who deals with the power tools in our house, she builds the things that we need and fixes them when they break. Her body was made to lift weights. Men in the gym regularly have to lower the amount of weight on the apparatus when Liz is done with a machine. She’s kind of a badass. She is many wonderful things and I am madly in love with her.

But she is not a natural runner.

She was not gifted with long sleek runner’s muscles. Doing a half marathon goes against everything her body wants her to do. Her biology fought her every step of the way this morning. It was grueling and unnatural for her. But she did it anyway. She decided to do something that she thought was almost impossible and she chose to do it precisely because it was hard.

And Lincoln watched her do it.

For the rest of his life, he will be able to think of this morning and draw inspiration from it. He has no excuses now. He can overcome anything his biology throws at him. He just has to tap into the determination and drive that he saw in his mother today, and he can do it too.

My wife may not be a natural runner, but she is one hell of a mother.

Run, baby. Run!

Facing Fear and Expecting the Worst

2011-10-29T02:28:00.000-05:00

I have a bit of a reputation with my husband of being a pessimist. When we first started dating, he accused me of always expecting the worst. I told him that it wasn't pessimism per se but more a sense of "well, if things go as they usually do, this is probably going to be a disaster." It was realism, I said, because things always seemed to fall apart when I touched them.

My dear husband probably did some cavalier dance move and laughed and said, "You just have to think positively, and things will work out all right." I no doubt rolled my eyes and mumbled to myself whatever, you danged optimist. But I showed him sure enough. After a dozen years of living with me, he now admits that I might actually be cursed. (He still thinks I'm a pessimist, though. Go figure.)

It all started with a now famous camping trip. One day out of the blue I announced that we should go camping for the night. We had the day off, the weather was beautiful, we had a friend who would lend us a tent. All we needed were groceries that could be cooked on a wire hanger, and we were set. We pulled into the lovely Palo Duro Canyon state park, found the perfect campsite, pulled the tent out and started assembling it. Before we could even get the first stake in the ground, the sky opened up on us. It was a flash flood as only West Texas can provide. We were instantly soaked, we couldn't see, and the tent was blowing like crazy, so we just threw a log on the darn thing to keep it from blowing away and ran for the car. We slept in the car and ate cold hot dogs and marshmallows right out of the bag. Sam said, "I've never seen anything like this. I don't know that we could drive out of here if we wanted to."

I shrugged and said, "It figures, if I plan something you can pretty much expect it to end up like this."

At first he argued with me, but over the years he has come to admit that I am decidedly unlucky. I am not allowed to pick the checkout lane at the grocery store because any lane I pick is guaranteed to need to call a manager for something or other while we are waiting for our turn. When we were planning our wedding, I was expecting a catastrophe of epic proportions, but the only thing that really happened was that we forgot to actually get married that day. It was no big deal (I can say now in retrospect); we signed the paperwork the first thing the next morning.

I tend to injure myself in bizarre ways and break things in a manner that no one has ever seen them break before. I am kind of a bad luck magnet. Sam can't explain it, he just knows I shouldn't take up gambling or play outside in a rainstorm.

I bring all that up because I am running a half marathon tomorrow. Tomorrow, people. Ok, technically it will be today for you folks because I write these the night before. The point is that this is something completely out of character for me, something I never thought I would do, and something I am still not entirely sure I am going to be able to do. My training fell way behind, and I am much less prepared than I would like to be. Plus, I am about as novice a runner as they come. Translation: I am so flipping terrified of this silly race. I have had nightmares about it for days now. When I think about it, I get worse stage fright than I have ever had in front of any crowd. The last time I was this terrified about anything it was the night before Lincoln was born, and that was because someone was going to cut a baby out of me in the morning. How can this be as scary as having a baby carved out of your innards, y'all?

Up until Wednesday, my biggest fear was not being able to finish the race. And then, in the very early morning hours on Wednesday, Nico woke up projectile vomiting. On Wednesday at work, exhausted from being up all night and feeling the impending doom of the race approach, I had a revelation. I wasn't going to be able to run the dang race anyway. Because it would be just my luck to prepare for months, get up my nerves to do this monumental (for me) thing, and then wake in the middle of the night on Friday puking all over myself. That, I realized, would exactly fit the pattern of my unlucky life.

Wednesday went by, and I felt only the vague squeamishness associated with cleaning up after someone else's sickness. Thursday was better, but that only made it worse for me somehow. I just knew this violent stomach bug was going to catch me, and if it hit Friday night, I would be out of luck. And here I am on Friday afternoon feeling distinctly achy with a side of tummy grumble. It figures.

I know this feeling well. It's so easy to expect the worst when it seems like the worst keeps happening. It makes me want to close up the shutters and hunker down, hide out and let life life to unleash its fury, just keep my head low and not make any loud noises until the storm is over. But that is how I spent too many years of my life, and I am done with it. I need to prove to myself that I can do things that feel impossible because one day I will have to look my boys in the eye and tell them they can accomplish whatever they set their minds to. And when I do, it can't be a lie. If I expect the worst, if I decide I am going to be too sick to run this race, won't it just prove to them they should just cut and run when times get tough?

How else can I look into the eyes of a boy who will be told by society that he won't ever be anything and tell him to dream big anyway? How can I make Lincoln believe in himself if he watches me constantly doubt myself? I know I can't control whether or not I get sick, but I can't just decide I'm going to be sick and give up preemptively, either.

I went today and picked up my race packet. It was so exciting to see the card with name and racing number (I guess they call them bibs, though they don't look like bibs to me). I pulled out my souvenir t-shirt and just imagined wearing it as a reminder of accomplishing this huge feat. I know people do this all the time, but not me. Running has always felt impossible to me, and I honestly can't believe I am going to go 13.1 miles in the morning. Just getting my packet made it so real, and I walked back to my car with a tremendous sense of relief and, amazingly, elation. I decided then and there that no matter what, I was going to do this thing. I may collapse three miles in. I may have to barf every ten feet along the way, but I am going to show up and give it every ounce of strength I have. And if I am too sick to do well, if I walk the whole thing or collapse into a heap, I will end the day knowing I did an impossible thing. I gave every bit of strength I had and then I gave some more. And when I get to the finish line (no matter where it is for me tomorrow), I will be able to look into the faces of my three guys and accept their congratulations without any hint of regret.

So, wish me luck. I will post pictures later if I get any that don't make me look like I am suffering a hemorrhage. Just don't tell me to break a leg. Knowing my luck, my body would take it all too literally.

How We Spend Our Lives

2011-10-28T02:37:00.000-05:00

"How we spend our days is, of course, how we spend our lives." - Annie Dillard

When I read that quote recently, I immediately both loved and hated the idea. One one hand, so much of my day is spent washing dishes or answering email or sitting in traffic. I hate the idea of spending my life doing menial tasks. But, on the other hand, I love the idea that our lives are right now, in every moment we spend. There is no "some day" because we don't ever arrive. We just keep moving on, moment by moment, day by day.

If we don't inhabit every day, every moment, then it's almost like we are forfeiting them. If we put things off until we have more money, until we lose weight, until we have more time, until the kids get older, until someday arrives, then our days and our lives are stunted. We think of days as expendable because they are only stepping stones to get us to our someday, where we will actually be able to enjoy ourselves. We figure we can waste the days until the good part starts because then time will stand still and we will finally be able to do and be and experience everything. When someday shows up, then we can start living.

One of the first things I thought of when I ran across that quote was how relieved I am when I get my kids to sleep for the night. Ah, me time, I sigh. But really, the life I want to look back on isn't one that features me sitting on the couch watching TV with a cocktail in my hand, grateful not to have any kids crawling all over me. The life I want to look back on is the one that features me rolling around with my two young boys, wrestling and laughing, being messy and loud and together. It's not that I need to keep them up later so I can have more hours with them; it's that I need to be with them more when I'm with them.

I need to listen to them instead of trying pathetically to multitask. I need to find joy in their waking hours and remember that the moments I spend with them make up our days together, which make up our life together. I'm a work in progress on this subject. I tend to get lost in thought. I am project minded, so free, unstructured time feels wasteful. I feel like instead of sitting at the dinner table and listening to Nico tell me a story, I should go ahead and start on the dishes while he's talking, you know, to be more productive. I try to listen, clean, and still reserve a few brain cells for the constant stream of planning and worrying, a sort of mental program that always seems to be running under all the other programs in my brain.

I remember someone telling me once that she loved every stage in her children's lives. She loved it when they were little because they were so sweet and needed her so much. When they got older, they weren't so tiny and innocent but they also didn't need the constant attention. As they became teenagers and young adults, they were even more independent but could have conversations and share ideas. And as adults, they were friends.

It is my hope that I will look back on raising my kids and be able to say I loved every stage. I hope I can be present enough to enjoy every inch of them every step along the way. I don't want to mourn the "loss" of my babies, or tell myself parenting will be manageable once we get past the toddler years, or believe I can finally have a social life when they are older. I just want to love every age, every size they pass through, every stage they enter. And in that vein, I am off now to go comfort a six year old recovering from the flu and hold a four year old who has been tugging on my shirt for however long it took me to write the last paragraph.

Reruns, Memory Lane, and a Cheer

2011-10-27T02:37:00.003-05:00

I heard this song on the radio the other day, and it transported me back in time to the days of music videos on TV, to a time when I was first out on my own in my very own apartment and my roommate yelled at me from the other room, “Hey Liz, get in here! You have to see this video I was telling you about.”

By the time the video ended, we were wiping mascara off our cheeks (this was West Texas in the 90’s, so there was no shortage of mascara between the two of us). I remember that I cried every single time I saw the video after that day, but I had forgotten until recently.

Hearing that song again after so many years, and after so many changes in my life, I was surprised that instead of simply reducing me to tears, it brought up thoughts of the portrayal of people with DS in the media. Immediately, my mind went to the late 80’s/early 90’s show “Life Goes On,” which I watched regularly and loved as a child. I don't remember that much about the show other than Corky, one of the main characters, was a teenager with Down syndrome who had a habit of teaching his family and friends tremendous life lessons that were always perfectly wrapped up and tied with a bow by the time the credits rolled. I’m not sure why I was drawn to the show, other than the fact that I’ve always been a tremendous sap, but I feel certain that “Life Goes On” was responsible for changing the way many folks from my generation view people with DS specifically, and perhaps also people with disabilities in general.

If it hadn’t been for the few and far between examples in the media of people who were different than me, I can only imagine that I would have grown up with a very narrow view of people with DS. People of my generation largely grew up watching everyone who was different be shoved into special education classes and isolated from the mainstream kids. We might have seen the kids from the special education classes at lunch or recess, but their removal from our general school experience was fairly absolute. They were the outsiders, and we treated them like that. Even those of us who made a point of being kind to the kids from the special ed classes (on the rare occasions we saw them) understood from the structure of their isolation that we were never intended to form close relationships with the kids with special needs.

Lest I come across as judge-y and holier than thou about this way of educating kids with special needs, I have to remind myself that just a few decades before I was in school, people with DS were simply institutionalized and left to wither and die prematurely on unwashed sheets in forgotten rooms. Sometimes when I see much older people interact with Lincoln, cooing over him and grinning at his antics, I remember that those people would have grown up with little to no interaction with people like Lincoln because people like Lincoln were systematically removed from society during their youth. At first, I found myself wondering what the older population really thought about my son and worrying that they were secretly harboring discriminatory thoughts about him. But after watching older men and women be thoroughly smitten with Linc time and time again, it has become clear to me that we have grown as a society in that regard. Even if they were raised with the message that people with Down syndrome deserve to be locked away, the shift in public opinion has reached them and they no longer seem to believe that. By and large, everyone who meets Lincoln treats him like a precious child, no more no less.

So obviously we've made tremendous progress. Even people who were raised in a time where people with DS were considered useless and just discarded now adore Lincoln. People of my generation, who saw children with special needs isolated and basically treated like a lower caste every day in school, came home and rooted for Corky on a popular TV show at night.

Today, my son is not eligible to attend many daycares and private schools because they are unwilling to take on the extra work of admitting children with special needs. But at least in public schools, our children are being raised in an environment of inclusion and will grow up having relationships with people whose names they would never have known a quarter of a century ago. Of course, that creates a series of challenges for schools already scrambling for resources and I know there are details that need some serious work in the arrangement, but at least it represents a huge step forward for the civil rights of previously discarded or hidden children. And I like to think it represents a huge step forward for all of us as human beings.

I don't know how much the PR campaign of feel good entertainment like "Life Goes On" and "Standing Outside the Fire" had to do with that shift, and maybe we've outgrown that saccharine kind of entertainment all together. Still, I believe seeing positive images of people with DS in mainstream culture shaped my viewpoint growing up. The closest we have to that now are a couple of characters on the love-it-or-hate-it show "Glee." In this case, instead of a character's Down syndrome driving the show's content, the characters with DS are just support roles in an ensemble cast, just part of the landscape not the main attraction, so to speak. While their inclusion on the show is heart-warming, their roles are not necessarily lessons in compassion and acceptance.

I know things are still far from perfect. We still have far more movies and TV shows that rely heavily on the "hilarious" use of the *R* word, whose entire plot is built on making fun of those who are different. (I'm looking at you, Tropic Thunder). But I do believe that overall, we are making steady progress. I don't think there's any doubt that this is the best time and place so far in the known history of the world for my son to have been born. He will have more opportunities, be treated with more respect, and likely live a much more full and happy life than if he had been born in any other time or any other place. Maybe Becky up there can give us a little cheer, "P-R-O-G-R-E-S-S, what's that spell? Progress! Progress!"

Sacrifices and Stones

2011-10-26T01:30:00.008-05:00

This entry is from Linc’s dad, Sam.

I love Austin, Texas. I wasn’t born here, but once I had visited my older brother Barry here back in high school, I knew this was the place for me. Liz agreed. After we got married we moved here from Amarillo (in a snow storm) as fast as we could.

Live music and open green spaces spring up everywhere you look here. There is a deep connection to and a love of history. Austinites revel in their dedication to art and higher education and literacy, but they are also the first people to let their hair down at the mention of a party. On one block you can spot a scantily clad transvestite dancing down the street with nary a glance while the next block will be hosting a fundraiser for the most conservative candidate for president of the United States of America.

Austin is my kind of town.

So you can imagine my considerable panic when Liz suggested that we leave Austin just a few years ago. We were shopping for our first house and I wanted to only look at properties in central and south Austin. This was where the heart and culture of Austin thrived. We told our realtor our meager price range and our specific geographic preferences and he showed us all kinds of houses. I use the term ‘house’ loosely here. Most were dilapidated and falling apart. Some were actually pretty terrifying (I won’t go into detail about the room we found where I am fairly certain animal sacrifices had been performed). The houses we could afford were not the kind of places we could convince ourselves we could happily raise Nico (Linc wasn’t even a gleam in Liz’s eye yet) and the school systems were notoriously low-performing and violent.

After a couple weeks of frustration Liz asked if we could see some properties a little farther north. After much heated arguing I agreed, but I knew we would never find anything that could blast me out of my beloved funky capital of Texas. I was just going up north to show Liz how wrong she was, to shut her up so we could get back to looking at that elusive perfect house in the imaginary perfect neighborhood in south Austin.

Have you ever had one of those experiences where you were really really glad that you were wrong? Yeah, this was one of those times.

The houses we were being shown were amazing compared to what we’d been looking at. They were so much better than what we’d suffered through down south that I even acquiesced to Liz’s request that we take a look at a few houses in Pflugerville, a little suburb almost surrounded by Austin’s northern borders. Suddenly we were seeing huge houses with massive yards. I went from convincing myself we’d be able to learn to love the places down south to instantly smitten with these comparative mansions up north. There weren’t even any sacrifice rooms!

What had I been so scared of? What had made me so disdainful of this suburban life? How could I have been so blind?

We bought a great two-story house in a charming little neighborhood. As the years have rolled along we learn more and more how wise this decision was. We couldn’t really afford private school for the boys (and a lot of them wouldn’t take Lincoln anyway), and neither of us were cut out for home schooling them. Thankfully, Pflugerville has a phenomenal public school system. The teachers there are passionate, the class sizes are manageable, the ethnicity is diverse, and the sense of inclusion and joy is palpable.

We have parties here. We have celebrations and holidays here. We are forging the memories that our boys will have as benchmarks in their minds forever right here in this house that I was so reluctant to even consider worthy of a glance.

We’ve found a church that we are excited to raise our boys in, and we have made great friends with our neighbors. Our lives and our boys’ lives are more full and meaningful and fun than I had ever thought possible when I dragged my feet “up north” just to prove my wife wrong.

Sure, there are fewer transvestites parading around up here than on 6th street in downtown Austin. Sure my friends are a bit more conservative than the old hippies down in Pease Park, and it might take me an extra few minutes to get to work. But that’s okay. I like it here.

I didn’t know I needed to be here. I wanted to be somewhere else but I needed to be here, Lincoln needed to be here. So we are here. I’m not a big believer in predestination, that our stories are already written for us, but sometimes I believe you can end up where you were meant to be. You have to trust whatever god you believe in and you have to trust those that you love. Sometimes you have to stop fighting for what you think you want in order to find what you need.

Many of you who know me are aware that I am not a fan of being wrong. This is the exception.

I am so glad I was wrong.

I guess I should start listening to my wife more often.

As an auditory reminder of what I'm trying to say, a reminder that will stay stuck in your head for a few hours, I'll leave you with the Rolling Stones (and an explanation for this entry's title).

Wait, where are the backup singers hiding in this video? And where is the keyboard player? I can hear them, but I only see the five main guys. Wait a second! You don't think they made a stop at the house with the sacrifice room down in south Austin, do you?

Brothers

2011-10-24T03:42:00.000-05:00

I've been thinking a lot about brotherly love lately and the role siblings play in our lives. Nico and Lincoln are just under two years apart, which means that neither one of them will ever remember a time when they didn't have a brother. When they look back on their childhood, they will see mom, dad and brother from the earliest, haziest memories.

In the beginning, we were so fearful of saddling Nico was a special needs brother. We were hyper aware that at some point Nico would likely be put into the position where he would have to choose to either listen to others make fun of his brother or stand up for Linc and face ridicule himself. We knew this meant Nico would have to learn to be a defender of the underdog, that even from a very young age he wouldn't have the luxury of laughing at the weakness of others to look cool.

And perhaps the hardest to swallow, we knew that in all likelihood Nico would have to take care of his brother once we're gone. Whoever Nico marries (if he goes that route) will have to be on board with caring for Linc, too. And whoever Nico befriends even in adulthood will have to be considerate of his special needs brother.

It felt like too much to shackle him with, especially when he was not quite two and we were coming to terms with what Linc's diagnosis would mean for all of us. I was, and am, sorry for the extra work that Lincoln will bring into his brother's life. But I'm not for one second sorry that we gave him Linc as his brother.

I'm not sorry that he will learn compassion from his relationship with Linc. I'm not sorry that instead of expecting Nico to become a doctor or lawyer, we are expecting him to become a man of character. I'm not sorry for giving him a little shadow who follows him around with stars in his eyes and adores him like he will never be adored by another person on this planet. I'm not sorry that Nico will learn to appreciate his physical and intellectual advantages with humility and an understanding of how arbitrary the dispensation of those gifts are. I'm not sorry for the lessons he will learn from his brother, and I'm certainly not sorry for the hugs they share every night before bed, the games of make believe played out in the back yard, the movies watched in tandem with little hands fighting over the popcorn bowl, the forts built out of blankets in the living room, the two man race to see what Santa left on Christmas morning, or the hours of laughter those boys have shared over everything from snot to their favorite TV show. It only took me four years to see that of all the things we could have given Nico, of all the gifts we could have bestowed on his young life, I think a brother of Linc's caliber is the best.

My Chaos Theory

2011-10-24T02:54:00.001-05:00

For the record, though I am greatly surprised by it, I like the chaos of being a parent. I like the noise and activity. I like that every inch of our house feels lived in (which might as well be a euphemism for "has been pooped on," as you'll find out if you read many of our entries). There is nothing clean or orderly or predictable about life with two boys, two dogs and the overgrown Peter Pan I married.

Just this morning, as I was getting ready, Sam asked where Lincoln was. I said, "He's swinging. At least he was thirty seconds ago. Oh wait, there he is, he's on the tricycle. He's fine, he just has something on his face. Linc! Wipe your forehead, you have something on your face! Wait, he has something on his hands, too. Oh, that better be mud. Linc, stop! Don't touch your face! Don't move!"

See, now, I would not have been able to predict that I would have spent half my morning washing dog poop off of my four year old, his clothes, and his tricycle. It's that kind of spontaneity that life before children simply didn't offer us. We basically never had a sudden frantic crap cleaning party first thing in the morning before the kids came along. I look back on that and feel a little sorry for the sterile, boring existence I led back then.

The house is always full of sound and motion. I can't take three steps without being grabbed or bumped or smacked with a flying toy. The soundtrack of "Mom... mom... mom..." and "I want... I need... can you find my... can I have some..." plays on a loop. Just when I start to get numb to the constant needing/describing/asking/whining of the talkative one, Linc smacks my leg to get my attention. He holds his arms up, asking to be held. I tell him, "I can't hold you now, I'm getting dinner ready." He signs eat, and when I don't answer him, he smacks me on the legs and signs eat again. I say, "I know I'm working on it." While he has my attention, he gestures to be picked up again.

I pick him up and continue dinner prep until he gets too heavy and unwieldy to work with. Then, I put him down and he bangs the cabinet door closed at my feet over and over again, punishing me for abandoning him to the floor. In the next room, Nico has been telling me for five minutes that there's no way he's eating what I'm cooking and under no circumstance will he eat anything but peanut butter and jelly or cereal for dinner. The dogs wrestle and chase each other into the kitchen, smacking Lincoln as they pass. Linc cries dejectedly into my pant leg and raises his arms over his head. For the love of Pete, lady, why won't you hold me?

Like I said, it's sort of unfathomable that I would like this level of chaos. I am (allegedly) a bit of a control freak. I like things done my way, and my way simply is not rolled in dog crap and smeared all over the yard. Call me crazy (shut up, Sam).

But there is such a payoff to the insanity. Every inch of this house feels like home. There's never that eerie, lonely quiet that you find yourself turning on the TV or the radio to drown out. I can't go three steps without someone I love reaching out to touch me. We never know what the day will bring, though we're pretty sure it won't be boring. And even if it is boring, it feels like a welcome surprise.

It's fairly impossible to harbor any pride about our standard of living. Most of our possessions are paper clipped or duct taped together. Heck, we have a car window that's being held up with a rubber door stopper and some glue. Our carpet has seen more carnage that several Civil War battle sights. Even when we get something new, it's scratched or scuffed within four minutes of being unwrapped.

And don't even get me started about how humbling it is to navigate a tantrum in the middle of the grocery store or have to explain to your child at the park that "we don't kick our friends in the face, honey, I'm pretty sure we've been over that." I mean, you're going to turn to the other parent and say, "He never does this," but as you're walking away, you also know you're going to be asking your little donkey, "Why do you always do this?"

Humility comes standard on the parenting package deal, and sticky fingerprints on your electronics. But, the key is that you learn pretty quickly that those sticky fingerprints are worth so much more than the device they're staining. You learn to thoroughly examine a chair before you dare to sit in it, but you also know that within seconds of sitting down someone will come along beside you and take the seat next to you. And demand something with a small, high voice. And touch you with their dirty hands and shatter your dream of sitting alone and drinking your coffee. And make you so glad that you don't have to sit there alone and drink your coffee.

The Best Medicine

2011-10-23T02:33:00.000-05:00

We spent our Saturday mostly in pajamas, the boys bouncing around the house like drunk little monkeys while I tried to get some overdue cleaning done. Now that they are both in school, they are much less enamored with lazy Saturday mornings than they used to be. They seem to think they should be constantly entertained on the weekends just like they are the rest of the week.

I, on the other hand, was pretty much immobile after my long run this morning and spent a couple hours resenting anything that drove me off the couch and up on my aching feet. Nico wandered around moaning that he didn't have anything to do, but Linc just climbed up next to me and settled in to watch a movie. As I sat there feeling exhausted and sore, I thought as I have so many times before, that there is something positively rejuvenating about Lincoln's presence. He sat with his little shoulder pressed to my side and chattered cheerfully, if unintelligibly, about the television, the dogs wrestling on the rug in front of us, his water cup, anything that caught his attention. Occasionally he would lean his head on me or pat my arm happily. By the time I was ready to get up and start the ~~job~~ joy of cleaning this poor, long suffering house and cooking food that my oldest would no doubt just refuse to eat, I felt renewed.

Being around Linc is good medicine. His spirit renews mine. Raising children is exhausting, and Linc is no exception, but there is also something profoundly uplifting about Linc that I can't quite explain.

And so, because I want to give you all a taste of Linc's restorative powers, because I needed some medicine today and maybe so do you, and because honestly I am out of things to say today, I thought I would share a quick video of Linc. In this video, Sam has helped Linc build a tower out of stackable wooden figures (which Linc likes) so that they can knock tower down when they are done (which Linc loves).

Of course, being able to build these towers is great for Lincoln's development, and we are so proud of the him for having both the dexterity to manipulate these fragile structures and the wherewithal to understand the concept behind it. But let's face facts here, all Linc cares about is the destructive portion of the exercise. And all we care about is seeing that laugh. That is good medicine.

Grandmother's Great Big Beach Vacation

2011-10-22T03:38:00.001-05:00

This entry is from Linc's grandmother, Mary.

When I was a little girl, there was nothing more important to me than the aunts, uncles, cousins and grandparents that were part of my very big family. Those times of dinners at Aunt Helen’s, giant family reunions in Quanah, Texas, unannounced drop-in visits to my grandparents and sharing hand-me down clothes with my cousins me feel very safe and connected. I want that for my kids and grandkids.

So about every 18 months, I can’t stand it another minute and I organize a big family trip. We have been to Arizona, Dallas, and Disney World. This year, we took my all-time favorite trip with the kids to Padre Island. I pored over web sites to get just the right house and just the right set of activities.

In June, 19 of us flew or drove to Padre Island to begin a one week adventure in patience and love. This trip involved numerous texts, e-mails, phone calls, menus and even a book I prepared for each family! The night before we all left from our homes, there was even a reminder to “go to your Bible and read Ephesians 4: 2-3.” “Be completely humble and gentle; be patient, bearing with one another in love. Make every effort to keep the bond of peace.” Why this particular set of verses you may ask? Well, 19 of us were about to spend one week in a 6 bedroom house and a lot of love and patience just made sense to me.

This blog is for Lincoln, so let me tell you how our little prince fared among 18 rowdy relatives. This particular house was 2 stories, 6 bedrooms, 4 bathrooms, a giant stairway made for climbing and a swimming pool. Believe me, Linc had 18 ever vigilant baby sitters. If you want to know how an extended family deals with a child with Down syndrome, just come on one of our trips. He is treated just like every other child in the house.

He is thrown in the air by Uncle Kerry.

He gets treats sneaked to him by Aunt Melissa.

He is included in the jam session on the patio by Uncle Barry.

He is thrown in a laundry basket and dragged up and down the giant hallway by his cousins.

He is monitored and dutifully reported for transgressions by his brother.

He is kept away from the stairs by his ever vigilant Aunt ‘Nita.

He is exalted by Aunt Wendy with “Oh, my gosh, he just said ‘I get up!!!’

He is entertained with glow sticks from Aunt Sarah.

He is held and treasured by Uncle Eric.

He is entertained by Grandpa Barlow at the beach for one full hour under an umbrella as Larry, in his beach chair, would raise the cap on the water bottle and Linc, in his beach chair, would slap it back down and laugh hysterically.

He is forced into service on the Pirate ship to swab the deck with the other children.

He is given his own water gun to shoot pirates.

He puts on a helmet and rides a pony with his brother and his cousins.

He joins his mother, daddy and brother in a swim in the rain.

And he is adored by me.

You know what makes this so remarkable? Linc was treated no differently that any of the other children in the house (and there were a bunch of them). We love them all so much.

It is so important to me to instill that sense of family in all of them. But they are scattered from Denver to Austin and those days of dropping in unannounced on family are as obsolete as the big family car that use to allow one child to travel in the shelf of the backseat, snuggled up to the rear window. I want this little boy to know that the Myricks, the Hintons and the Barlows love him just like they love Abbi, Katy, Nico, Jude, Audrey, Barron and Lily.

On Mucus and Other Bodily Fluids

2011-10-21T02:11:00.002-05:00

I know what you’re thinking. With a title like that, I can’t wait to get reading! Tell me more about the mucus! But seriously, I have something to say, a letter of sorts that I have decided to inflict on all of you because you have decided to come on this journey with us and frankly this is part of the journey, like it or not…

Dear snot,

Why must you constantly pour from my child’s nose at all hours of the day and night? How can there be that much of you in his tiny head? Logistically speaking, that doesn’t seem possible.

Why do you show up in every picture, either as a tentative explorer peeking out of a nostril or as a smeared and dried layer of shellac on my son’s cheek? It’s just rude, is what it is. Do we show up to ruin your family photos?

I get it. You’re not as gross as some things. It could be worse. It could be blood. Or puke. Excuse me while I shudder violently here for a moment.

I’m not like a super big fan of feces (I mean who is, right?), but I can handle mucus and feces better than blood and puke. So, I guess I should just be glad he doesn't have a chronic nausea issue and isn't afflicted with some stigmata type wound that constantly gushes blood. (I don't know how realistic that is, but I'm trying to be positive here. Just go with it.)

It could be worse. Of course I know it could be so much worse. It could be a broken bone or a chronic disease or cancer. I understand, and believe me I am thrilled it is only a lifetime supply of never ending snot.

And yet, dear snot, I would like to kindly ask you to go the heck away. Please. Pretty pretty please.

Sincerely,
One kleenex-wielding momma who has just about had enough of you already, mucus

Well, now that I've gotten that out of my system, I can move on to more pleasant things. We do have one child who is not constantly leaking snot, and yesterday was that kid's 6th birthday. For the record, six years is almost long enough to forgive Nico for a labor that began on Wednesday and ended on Friday. Almost. He was high maintenance even from the womb, I tell you.

Anyway, even though the boys had a big party on Friday, we couldn't resist having a small celebration yesterday. Nico was thrilled to bring cookies to his classmates, and the school book fair happened to fall on his birthday, which Nico took as a sign that his birthday is a kind of a big deal. Then, we had presents and the obligatory cage match of man vs. toy packaging (a completely unfair match, by the way, because have you seen the positively medieval binding systems they are putting on toy packaging these days?). As we were settling in at the end of the day to watch Mary Poppins and eat cupcakes, Nico told me it was pretty much a perfect day. A mother can't ask for too much more. Except perhaps a lifetime supply of kleenex. And someone to follow Lincoln around and wipe his nose approximately every 34 seconds.

Ok, maybe just one more teeny little thing. Can the child learn to smile for the camera already? Nico's posed pictures are downright painful.

Seriously, ask this kid to smile for the camera, and all you're going to get are strange Muppet faces.

This one's better, but it still has that look of "I'm smiling through extreme abdominal pain."

Happy birthday, kid. You can thank me later for your complete lack of photogenic tendencies. Way, way later, I'm guessing. I'd help you get those toys out of the packing, but I just wiped your brother's nose and I have to go wash my hands now...

Separating the Wheat from the Chat

2011-10-20T02:52:00.003-05:00

Sometimes I fear I paint too rosy a picture here of what our life is like, or that I talk so much about how alike Linc is that people wonder if I notice how different he is, too. I’ll be the first to admit that every day isn’t easy. We aren’t living in a dreamland where we have imagined away Linc’s DS. It’s just that most days it’s only a small piece of the puzzle for us, not the big picture.

But some days, it becomes magnified. Some days his differences take over our field of vision like they’ve been hit with a high power zoom. Sometimes my fear of how the world will treat him swells up and becomes this palpable thing, like a body here in the room with me, breathing and taking up space right along beside me. Once in a while, though I know better, I start to think about Linc in typical terms and it sends me into a panic. He’s four years old and can’t really speak yet. When will he be potty trained? How long will we have to use gates to keep him from falling down the stairs and a baby monitor to make sure he hasn’t had an attack of croup in the night?

I had a moment like that the other night. Linc and I had gone to our Tuesday night church group without Sam and Nico because Nico had been sent home from school with a fever that afternoon. One of Linc’s friends came in said that Linc was signing something no one understood, and I told him that Linc was asking for water. Now normally, Nico is there with us on Tuesday nights to help translate, but without his brother to speak his special brand of sign language, Linc was wandering around trying desperately to get anyone to understand his request. Linc uses a distorted version of many of the baby sign language signs either because he can’t do the real version or because he has gotten lazy over time and opted for a rough estimate of the actual sign, so even if someone there had known sign language, they still wouldn’t have understood his version. He literally speaks a language only three people in the world know (Sam, Nico, and I), and even we don’t understand him all the time.

It was such a small thing, and Linc wasn’t particularly upset, but it just got me thinking how helpless it must feel not to be able to communicate what he wants in a situation like that. At home with the family, we understand him pretty well, and if we don’t understand him right away, he knows where everything is and can walk over and show us what he wants by pointing or gesturing. At school, I think pretty much the same is true. They’ve had time to learn his adapted sign language, and he knows the layout and routine. But beyond a handful of people at school and home who know his signs and have learned to understand his disjointed bits of speech, Linc seems profoundly cut off from the world. A small incident like that one reminded me anew that, as expressive as he is, he can't do something as simple as ask for a drink of water without one of his translators around.

And the thing is, his speech really is coming along slowly but surely. It’s just the way it’s coming along feels like a guessing game most days. See, he is constantly babbling. He talks and makes noise all day long. Sometimes, in that stream of never ending sound, we are pretty sure we hear words (often phrases even) that match up to what he’s doing or wanting at the moment. But, just as often, the stream of sounds is just a nonsensical chain of syllables that sounds more like Chinese than English. Occasionally, it even has a bit of a Yiddish slant. (He's very exotic, that kid.)

Because of that, it can be so easy to be convinced one minute that he is speaking in sentences and become equally convinced two hours later that you were making it all up and he isn’t really speaking at all. It’s kind of like panning for gold. There’s so much there, but you have to keep sifting the mud away to see if what you’ve got is the real thing or just more debris. Was that a real word or just a random vowel/consonant pairing that sounded like gold to us desperate prospectors?

For some reason, the excess chatter makes us question the real words. Perhaps it shouldn’t, but it seems odd that he would so often combine nonsense sounds and real language. It’s almost like he doesn’t know he’s speaking correctly when he gets it right or (what I suspect) that he doesn’t know he’s not saying anything identifiable with all the rest of the babbling. And we have no clue how to teach him to cut away the excess and keep the real language.

Tuesday night, as we drove home, Linc was unusually quiet. I almost forgot he was back there until I heard him giggle at something, though I never figured out what it was that tickled him sitting alone in the dark, empty back seat. When we got home, though, he burst in on Nico and his daddy with a grin, saying “hi” and running in for his welcome home hugs. We settled in for our nightly ritual: a snack on the couch before bed. Linc finished his cookie and slid off the ottoman, where he likes to sit and watch TV. He padded into the kitchen, and we could hear him open the pantry door. I yelled at him from my seat on the couch, “Linc, what are you doing?”

And from the kitchen he said, clear as day, “Not done. More.” Sam and I looked at each other.

“Did you hear what he said?” I asked, wondering if I was making this up.

Sam answered, “Oh yeah, he said not done, more.”

Sam found him pointing at a jar of candy in the pantry, repeating. “More.” And you can bet he got a handful of candy corn for his trouble. He came back and took his seat on the ottoman, grinning and clutching his prize for dear life. He smiled at me and showed me his candy corn and announced, “Baga ba dit. Baga ba dit chaim.”

“Bagabadit chaim, “ I agreed. Because really, I understood. It was a victory cry. Mission accomplished, treat in hand, sugar high imminent. Look what I got, mom. I didn’t have to do any sifting to find the message there, gold or no.

What I'm learning in moments like this is that when I start to panic, it's a clear sign I'm asking the wrong questions. In those moments, I'm focusing on the what if's and looking ten steps down the road and around the corner instead of focusing on the scenery of where we are now, today. The question isn't when is he going to speak already but when am I going to start listening to what he is already saying. The roar of what he's not saying shouldn't be allowed to drown out what he is already saying. We don't have to be in the business of sorting the wheat from the chaff because, mumble or monologue, it's all speech, it's all progress, and the babble doesn't cancel out the real deal.

We're not cutting away the chaff from the substance of Linc’s speech; we're watching the chaff become wheat, too, as his sounds grow into words. I don’t think he’ll stop babbling, just that one day we’ll realize the babbling is becoming more and more coherent, the vowel/consonant pairings becoming less and less accidental. And one day, before we know it, we'll wake up and realize hey, this is all wheat.

Letting Them Go

2011-10-19T00:08:00.001-05:00

This post is from Lincoln's dad, Sam.

The other day I was getting the weekly groceries for my family. The woman behind the checkout had rung in my groceries dozens of times before. She loves Nico and Linc. They would always have conversations and flirt the whole time she would check us out. When she rang in my beer that day she casually asked me for my ID. Unlike many other people, I am not offended by this. I too am in the service industry and I’m fully aware that this is the law. The manager who had come over to help bag my groceries laughed however, and asked the woman how she didn’t recognize me since I was in there every week.

The checkout woman looked me in the face, a face she had seen dozens of times before and there was not even a spark of recognition in her eyes. She had no idea we’d ever interacted before. Again, I was not particularly offended by this. As a waiter, I too see hundreds of people a week and have a very hard time recognizing return customers. What was interesting was her reaction when the manager helpfully reminded the checkout woman that I usually had two boys with me.

She looked at me again and then looked down where Lincoln and Nico would normally be. We both realized that this was the first time that she had checked me out since both boys were in school. Recognition slowly dawned on her face as it split into a big smile.

“Oh, yeah…” she chuckled. “Where are my boys today?” Not ‘your’ boys mind you, “MY boys,” she’d said.

“They both started school,” I explained. “I finally get to do this grocery shopping thing solo now.”

“Oh,” she replied. “Well… that must be nice.” I couldn’t help but notice the subtle disappointment in her voice.

“Yeah... Nice,” echoed the manager with a suspiciously similar tone.

What they meant was, “That must be nice for you to no longer have to deal with herding a couple of preschool kids while you go about your daily chores but… what about us? What about everyone else that got to interact with Linc and Nico everywhere you had to take them before their school years started? What about the rest of the world? Those two were bright spots in our day. We all liked those two little guys but now we are stuck with just lame old you, and you are not nearly as cute.”

Again, I was not offended at all. In fact, I realized that I completely agreed with them.

I have to admit that as I pushed that cart to my car, a part of me was seriously considering home school. I wanted to go snatch both my sons out of their school building right that instant. Not from some noble or selfless sense that I could sacrifice my time and interests to educate them better than their teachers, but because I just wanted to go show them off out there in the world, to show people all their charms and let them run free where everyone could enjoy them and fall in love with them.

It just feels so wrong to watch your little kids walk down those long hallways to classes; to just let go of them like that. It feels like an abdication of responsibility, like a betrayal of trust. And, that day, it also felt like denying them access to the broader world, the world of checkout women who love to flirt with them, of toy store employees who love to play with them, of book store stockers who ohh and ahh at them reading together in the mornings. It feels like I was gifted with these bright lights to share with the world but now I am being forced to hide them away, depriving the world of the joy they bring.

But that’s not the truth.

That’s just the way it feels to loving and proud parents.

Yes, letting go is hard, but the truth is that letting my boys go is, in fact, what gives them to the world.

Every day that my sons go to school or to church or to summer camp without me is an opportunity for them to share themselves with the world in their own ways. Every lesson they learn on their own is one step farther down the path of their own lives. It is what makes them who they are, or at least who they will be.

The strictly biological purpose of all life (not the philosophical purpose; I’m not getting into that today) is simply to create more life, to continue; and then to release that life into the world. That cannot happen if I hold on to my kids anymore than it could were a mockingbird to refuse to let her chicks try to fly out of their nest.

I have to let them go out and become a part of the world. Even when it’s so hard, and there is no guarantee that the world will accept them. Even when one of them has an extra chromosome.

We have to trust our children. After all, they trust us implicitly. We have to fight our selfish doubts and argue against our fears. We have to force ourselves to let them fly.

It’s what they were born to do. It’s what we were all born to do.

So, I’ll let them go.

I’ll send them to school on their own.

I’ll try to encourage them to push the boundaries that the world and I have created.

I will let them fly.

And I guess the checkout woman at the grocery store will just have to remember me because I am charming and fun, not because my kids are. I mean, I am pretty damn charming when I want to be. After all, my own mother encouraged me to fly so that she could share me with the world too. But someday soon, Lincoln will be at his local grocery store on his own, and he will be just as charming and funny as I am, and he will be just as memorable as well.

And he will be all of those things because Liz and I let him go.

What I Like About You

2011-10-18T03:14:00.002-05:00

I promise I don’t spend every day combing the internet for Down syndrome related stories. Of course, when I run across one, if it strikes a chord with me, I save it for use in October. But I don’t spend much time seeking out DS related materials. In fact, the piece that was the inspiration for today’s post was something I happened upon as a recommended link on a completely unrelated article I was reading. Over in the sidebar, I saw Top 5 Things That I Like About Having a Kid With Down Syndrome. I loved the idea of the piece, and before I even clicked on the link I knew I would write a list of my own. I couldn’t commit to naming my top five, so I went for five things I’m loving right now, five things (in no particular order) that make me know with certainty that this path has changed me for the better.

5 Things I Love About Having a Child with Down Syndrome:

1. Linc is loved by pretty much every person he meets. I know someday he may be thrown into a group of teenagers who bully him or call him names. I know strangers on the street may one day say something to break his little heart. But so far, we haven’t seen it. So far, Lincoln has charmed the pants off of pretty much every single person who has ever come into contact with him. Linc is like a local celebrity many of the places we go, and it has been that way since he was a baby. He flirts with cashiers, gives high five to the students lined up at his school, waves to strangers passing by. He just has this way of drawing people in and winning them over. It’s a beautiful thing to behold.

2. Linc has an enormous personality. Perhaps this is the reason behind #1, but I have never seen someone say so much without saying a darn thing. He signs with such personality and emphasis, he might as well be screaming sometimes. He doesn’t speak much yet (though he is coming along with his language skills), but he is constantly making noise. He is non-stop verbal output, and so much of his intent can be inferred from the inflection of these wordless soliloquies. He is full of joy most times, just bursting with it, but he has a temper and will let you know when he’s frustrated. He does a million little things that show his rock star personality. He does a little dance in his chair when he gets a bite of food he likes. He “sings” loudly into anything that is shaped like a microphone. He follows his brother around and tries to do exactly what his brother is doing, no matter what it is or how hard it is to accomplish. When he tries to potty, he will sit down on the seat and then exclaim “Oh!” and hop up to get a book, then sit back down and “read” his book, chattering happily to himself. He laughs all day long, more times than I could even count. He laughs out loud when anything pleases him, and it just fills our home with this effervescent soundtrack.

3. His hugs. Linc gives the best hugs. He hugs so hard, with all his tiny might, that he bowls over smaller kids with his hugs. While this super hug ability is terrifying to babies, it is endlessly endearing to adults. He hugs with every square inch of his frame. When Lincoln hugs you, you get a sense that even his toes are flexing. We used to call him a little koala because when you picked him up, he would mold to your body and wrap himself around you like a koala on a Eucalyptus branch. Sometimes he pats your back while he’s hugging. That move is particularly endearing to men, for some reason. They always get a kick out of the back pat.

4. He shows me a different way to look at the world. Granted this is pretty much the theme behind our blog so I’ve mentioned it countless times, but I just can’t leave it off this list. Linc has shown us a way to look at life, and at other people, that is divorced from judgment or expectation of performance. He has forced us to see people without rating their abilities and has freed us to see life without expecting a given outcome. He’s teaching us to live in the moment, to love people for who they are not what they can do, and to let go of the illusion of control over where the next few days or years will take us. He shows us that we don’t have to see the end of the path; we just have to take the step before us and face today’s challenges, one day and one step at a time. For someone who has been called a pessimist, OCD, a perfectionist and a control freak, that’s a powerful dose of freedom to get from one small child.

5. Linc completes us. When I was pregnant with Linc, the nurse at our doctor’s office was filling out paperwork and asked us about our intent to have any other children in the future, but she phrased it in what I thought was the loveliest way: “Does this baby complete your family?” At the time I said yes because Sam and I were sure we only wanted 2 kids. The truth is we don’t intend to have any other children, but even if we did, Linc has bound us together in a way that our family needed to feel complete. That’s not to say that we love Linc more or that Nico’s birth didn’t change our lives for the better. It’s just that Linc feels like the glue that holds us together somehow. The way he dotes on his brother, the way he gave us a common goal, the way his challenges have forced us to expect more of ourselves, the way his sweet, contagious spirit of joy has infused our lives with laughter. I can’t explain it exactly, but Lincoln fills a hole we didn’t even know we had in our lives, and now that we’ve had the hole filled we couldn’t imagine going back to a time before he existed. He was made for us, I believe.

Learning from Lincoln

2011-10-17T02:17:00.000-05:00

Today's entry is from Linc's teacher, Crystal. Of course Linc has an amazing team of teachers and therapists who work with him, but Crystal has been the captain of Team Lincoln from day one. We just love what she has to say about teaching children with special needs in general, and about Lincoln in particular.

As October grew nearer on the calendar, I asked Sam if they would continue the blog this year. I admitted that I love the blog so much I often read in months that don’t start with O. I was elated when he let me know that 31 for 21 would continue this year. And then I was asked to write something to share. I feel so deeply honored to be asked to write something for Team Lincoln (and as all of you know, everyone who meets him is on Team Lincoln).

In order to tell my story about Lincoln, I am going to back up and tell a part of my story – the part that leads me directly into the path of being his teacher.

I can clearly remember the day in first grade when I decided I wanted to be a teacher. My mom was an assistant in a special education classroom at my elementary school. I spent every afternoon in that classroom acting out my dreams of becoming the most popular teacher in the school. I asked a lot of questions about the students in that class and what made them “special.” Mr. Flynn, the classroom teacher told me that they were special because everyone is special. He said that everyone learns, speaks, and thinks in different ways, but we are all equal and special. But it wasn’t just that he said it. His actions taught me that as well. There was no pity, no coddling, and certainly none of those sad eyes and clucking noises in his classroom. There were goals and expectations and lots of hard work.

Then one day in 2nd grade, a boy (who shall remain nameless) was picking on me during recess. He was pulling my pigtails and yelling “Gravy Train” - pretending my braids were the reigns of his chuck wagon. This had been going on for years and though it always bothered me, I really didn’t do much about it. That particular day, the 5th graders were on the track while we were at recess. One of Mr. Flynn’s students noticed and came over to where we were standing. His name was Dean. Dean had cerebral palsy. He was terribly difficult to understand and one side of his body didn’t work so well. On that day, none of that mattered. Dean made his way to where we were standing, grabbed the front of the boy’s shirt with his good arm and (no lie) lifted him off the ground so they were eye-to-eye. Dean told him never to bother me again and let him dangle for a bit longer before dropping him to the ground, winking at me, and ambling back to the track. That was the moment I made up my mind to teach students with “special needs.” I think I had some idealistic notion that I could help all kids to be heroes.

In later years, I realized that maybe part of what I wanted to accomplish was being an advocate for those who couldn’t advocate for themselves. The awful truth is that for every family like the Myricks – who treat Lincoln as a child first and only – there is another child who is treated as a burden and not given access to the care and education that is deserved by all children. Liz has so eloquently touched on this in a recent entry, so I will move along with my story rather than belabor this point.

So fast forward a few years and schools, and the Myrick family walks through my classroom door. I was at a point in my career where I was really questioning whether or not I made a difference. If I was making a difference, was it enough? I just didn’t feel like I was living the life that that my second grade self wanted my grown up self to have. When Lincoln came to school, I started on a journey of change, learning, and reassurance.

Lincoln loves to celebrate every little success that he or his classmates make. He cheers and claps and laughs when good things are happening in the classroom. He is first in line to high five a friend when they do the right thing. I call this “Lincoln Logic” because it’s very clear that he sees a direct correlation between success and celebration. I’ve started applying this to other parts of my life. I have started looking for little things to celebrate. I want to cheer for my friends, my family, my students, my coworkers, and everyone in between. If you want to be happy and make a difference, start by being happy and doing good things. Encourage good things in others and in yourself. Learn from mistakes (that’s why we make them) and celebrate doing better next time. Don’t waste time wallowing in self-pity. Lincoln Logic dictates we turn our frowns upside down.

Lincoln has taught me that making a difference is not something that happens all at once. My job is not to create big changes in a short period of time. My job is to create small changes that will last for all of time. I get it now. I don’t need to teach Lincoln the 3R’s by the time he leaves my classroom. It’s my job to teach him to take turns (which is more about learning to have a conversation, but also is helpful in making friends), to show him how he can communicate, and to celebrate every time he tries.

And when he doesn’t succeed, Lincoln never cries, never quits – he just tries again. Sure, he gets frustrated and sometimes I’m pretty sure he’s mad at me, but he never gives up. He’s one stubborn kid. But that determination is what is going to help him go far in life. He’s not going to let people tell him he can’t do things. And when he’s four, it’s sort of bothersome because even though you said no, when you turn around, he’s on top of the table waving at his friends across the room. I try to imagine him at 40 – and here’s what I realize – I don’t think there’s anything he can’t be if he is determined. President Lincoln Myrick? CEO Lincoln Myrick? Pop Star Lincoln Myrick? Do you see it too? Future Lincoln is as determined as Preschool Lincoln and is doing everything that he was told he could never do.

So after a year of Lincoln in my class (along with a whole bunch of other equally wonderful little munchkins), I finally get it. I’m doing a good job. I might not be moving mountains every day, but we are moving in the right direction, and that is all it takes. And that notion that I was going to help all these kids be heroes? I missed the point completely, but I get it now. These kids with "special needs" are already heroes. They overcome adversity, laugh in the face of nervous stares and fleeting eye contact, and already know the value of a positive outlook and perseverance.

So, thank you, Lincoln Myrick, for being my hero and teaching me how make a big difference in a small way. I am so blessed to be a part of Team Lincoln and long after you are too big for the things in my classroom, I will be celebrating your accomplishments. Just try to remember to visit because I sure will miss you!

A Delicate Balance

2011-10-16T02:25:00.001-05:00

I loved Sam's post the other day about English being a living language. It got me thinking about something that happened a couple of months ago, something that has stuck with me and made me question whether I did the right thing.

I was on my lunch break, and I decided to walk over the the building next door to pick up ~~some fried crap~~ something quick to eat. Since I work on a college campus, there are several food court style places within walking distance where I can grab something to eat as long as I don't mind being inundated with teenagers and twenty-somethings in faux vintage tees and skinny jeans. The lines are set up to zig-zag like at an amusement park, so as you shuffle along you are wedged in on all sides by people you don't necessarily want to be elbow to elbow with. Most of the students were hunched over with the kind of contrived nonchalance that young people have perfected, fiddling with their phones and appearing closed off but somehow also seeming hyper aware of their surroundings.

Two women joined the line and were shunted into position right beside me by the miniature maze of the line. They looked like me: business casual and heels, big bags that were somewhere between a large purse and a briefcase, the unofficial dress code of young staffers. And like me, they hadn't mastered the art of the inconspicuous, I'm-too-sexy-for-this-line demeanor of the students around us. They were talking loudly about some frustration at work, venting about what I can only assume was their boss.

I looked over at them, too old and uncouth to pretend their conversation wasn’t disturbing my reverie, but right at that moment my phone chirped at me from inside my bag. Pulling out my phone, I saw that Sam had sent me a picture of Linc happily eating artichoke just as I heard one of the women say, “I mean he’s like a re****ed child. Like he never learned the difference between yellow and orange.”

The timing of the moment was that exactly as the women were saying those words, the photo of my son joyfully eating a new food loaded on my phone. I saw Lincoln's sweet face as I heard this woman beside me call her boss a re****ed child.

And what did I do? I took a couple deep breaths and looked at my son on the screen. I took comfort in the sight of his face and told myself it wasn't worth the grief because it would be my turn to order any second and I would be away from that terrible woman.

But what I wanted to do, what I maybe/probably should have done was turn to that woman and say, "Oh, you think your boss is like a re****ed child? To me, it seems like you are the one having trouble with basic concepts. For instance, your boss is a difficult man who no doubt gets on your nerves. And this," I wanted to tell her, holding up my phone to show her Linc's picture, "This is an innocent child who does not deserve to be slandered because you can’t come up with any better vocabulary words."

I think the only reason I didn't speak up was because I was afraid, given the timing of her comment and the crush of people around me, that I couldn't say something without making a scene. I cry when I get mad, and I cry when I get nervous, and I cry when I even think about the world hurting Linc because he is different. So, yeah, I was afraid I wouldn't be able to get the words out without crying slash screaming at the women.

The truth is that I react to that word like I've been slapped. Or, like I've had a bucket of ice water thrown at me. It kind of knocks the wind out of me for a second, and often by the time that second has passed it often feels too late to react with any kind of grace or tact. By the time I am ready to respond, I would have to pretty much say, "Wait wait wait, let's go back to three sentences ago when you said the R*word. I have something to say about that." It doesn't feel organic; it feels contrived and even more awkward than it has to be. I think it would make people feel terrible to call them out like that for using a word they don't intend to be as hurtful as it actually is to us. I don't want to humiliate people who aren't really trying to attack my son even though I do wish people would stop using that word. I haven't figured out the delicate balance yet. I feel heavy handed when I ask people not to say that word around me, and like I'm a coward when I let it slide.

The truth is that I can separate the casual use of the R*word and a direct attack on my son. What bothers me is not that people overuse an inappropriate word. What bothers me is that I fear people who use that word believe people who are not like them deserve to be ridiculed. What bothers me is that it seems to be a symptom of the belief that Linc doesn't deserve a place in society, a belief I fear is more prevalent than I first thought possible. What scares me is that people tell themselves they are just saying a popular word for its shock value, but really they are using it reinforce the belief that they deserve to torture anyone they deem beneath them.

I am still learning myself, clearly, where to draw the line and what hill(s) I am willing to die on. For now, I will just say I love this PSA about the power of words (and not just because it has two of my favorite Glee stars). Words have the power to do so many great things in this life. Why use them to tear others down?

Potter Party

2011-10-15T08:51:00.000-05:00

If you're not a dork, or if you think stories about young wizards are unraveling the fabric of society, you might want to go away and come back tomorrow. I'm warning you for you own good here because today we are going to talk about the boys' Harry Potter birthday party.

Since Nico and Linc both have October birthdays, we often have one big combined party for both of them. Eventually, I'm sure, they will each insist on having their very own special day, but for now it works out well for everyone. We get do something on a little bit larger scale than if we had to throw two parties, and we don't have to invite, plan, prep, and clean for two separate parties just a couple weeks apart.

This year, when we were considering ideas for a party, Nico was adamant about picking the theme. It was a close tie between Star Wars and Harry Potter for a while, but since he had recently finished reading the first Harry Potter book, wizards won out in the end.

So, last night we welcomed 17 kids (and their parents and a few friends) to an evening at Hogwarts. Everyone entered past a "Platform 9 3/4" sign, gathered in the Great Hall, played in Hagrid's Hut and ran around beneath the Whomping Willow.

My favorite to recreate, and the kids' favorite to shop at, was Honeydukes Candy Shoppe.

We had a sorting ceremony, where Nico (of course in his Halloween costume for the event) announced that he had been sorted into, what else, Gryffindor House.

The kids made ties in their house colors to wear, decorated their own wands, and made Buttterbeer in potions class. This "potion" was supposed to be potable but given the creepy names we gave some of the ingredients (troll snot, Hippogriff dander), it wasn't a popular beverage for most of the potions students. Finally, we had a scavenger hunt that sent the kids through Hogwarts castle in search of a treasure, wizard gold to be used to buy treats at the candy shop.

Admittedly, it was a lot of work in the days leading up to the party, but I have to say it was really a great celebration for the birthday boys and their friends. In fact, Linc was having so much fun chasing his friends around the yard and shoving sugar-laden goodies in his mouth, I realized this morning I didn't get a single picture of him at the party. Oh well, Nico Potter was around to pose for a quick photo in front of Honeydukes.

Happy Birthday, sweet boys! I love celebrating each new year with you. You have both made my existence make sense, and in thanks for that I will spend hours baking cauldron cakes and pumpkin pasties and flobberworm casserole any old day.

What I would have missed

2011-10-14T07:44:00.002-05:00

This can be a dangerous game, the “what if” game. It can lead to grass is greener type of thinking if you’re not careful, but it can also, when done carefully, remind a person of how far they’ve come and how lucky they are to be standing in the exact spot their feet have landed. That research study got me thinking about how different our lives would have looked if Lincoln didn’t have DS. So, today I want to look at what if Linc had been born with 46 chromosomes, pink and fat and healthy and typical.

I have no doubt we would have adored Lincoln instantly. We would have taken thirty seconds to thank God for another healthy child, though we would have really been thinking that we were pretty much expecting a healthy child and really it was no big surprise we produced another “perfect” little bundle of joy. We would have taken him home, happy but tired, and fallen back into the pattern of bickering that we picked up after Nico was born. We would have continued taking our frustration and exhaustion out on each other, and though we were struggling to get by, we would have kept on insisting that we could do it all alone.

We would not have been cauterized together as a family the way we were when Lincoln was born. We would not have been driven together by the sudden realization that surviving now meant more than making it through late night feedings. We wouldn’t have been united in the common cause of getting Linc home from the NICU and getting him the best care and therapy we possibly could.

And what’s more, I don’t think we would have ever realized that we couldn’t do it alone. We wouldn’t have been forced to reach out to a community who had experience with something we were just beginning blindly. We would have remained insulated, wrapped up in ourselves and our way of doing things, instead of reaching out to the DS community, joining a church, and learning to ask for and accept help from family and friends when we need it. We would have been stuck telling ourselves, “I can do this, if I just work a little harder, if I just read another book on parenting and count to three before I lash out at the kids and if I nap when they nap so I’m not so frazzled.”

Instead, we had the unbelievably freeing experience of being forced to say, “Golly, this is harder than I thought. I am in over my head here, and I need some help.” And that has brought us support we would never have known existed otherwise. It has allowed us to put our egos aside and learn what is best for our children, allowed us to learn from experts and also, at times, to learn to ignore what the experts say and listen to our own intuition about what our children need.

Without our Lincoln, in all his 47 chromosomal glory, we would not have been able to raise the considerate, empathetic person Nico is becoming. We would have been so focused on how bright he is, on what a glowing future that predicted for him. We would have taught him that being smart and succeeding in school were top priorities for his life, instead of teaching him that being a person of character is the most important future we can envision for him. What version of success would we have conveyed to both boys?

Undoubtedly, both of our children would have been raised to be more shallow, more quick to notice status and ability rather than personality or character. Nico would have been infinitely more selfish if he had not been raised with a brother who needs so much time and attention, if he had been allowed to keep hogging the spotlight and taught tacitly that he deserved all the attention he could capture. And we as their parents would have sadly believed that the measure of our success was closely related to how much praise and attention our sons garnered from the world. How many people they charmed, how many awards they received, how many dollars they made.

I think none of us would ever really have known what we had. We would have been the bright, healthy parents of two bright, healthy children. Two little fireballs destined for greatness, smart enough to get into any college and tackle any career. I have a feeling that would have been very important for us and we would have been tempted to live vicariously like academic stage mom types. And we would have thought all was as it should be. We would have felt we deserved to have healthy, brilliant children whose trajectories had no end in sight.

We would never had known the fear of watching a son struggle to breathe, a son with a hole in his heart, a mouth that refused to accept food and lungs too sluggish to adapt to the outside world. We would never have known the terror of reading the list of possible health conditions our son might have, never have lived through days when we believed heart surgery was imminent and when we learned that even with best scenario health outcomes, the average lifespan for a person like our son was 45 years. We would never have known that every single day is a gift. Every single day is an amazing, undeserved gift of time with our beautiful children, with each other.

We would have gone on believing that we deserved every day, deserved every breath. And we would have taken them all for granted.

If Lincoln hadn’t forced us to face the fact that we are all temporary, we are all broken in our own ways, and we all only get a small chunk of time here, we would have taken for granted thousands upon thousands of deep breaths, steady heartbeats, and tiny spoonfuls of food shoved into a tiny mouth. We would not have cried and cheered at the first few bites of ice cream. Would not have caught our breath in wonder at a few steady footfalls on a flight of stairs. I would not have learned the intimate and complex language of a wordless child climbing up next to me in a chair and gesturing in a downright cheerful way for his list of demands: water please, and pull the blanket over our legs so we can share warmth, and then look at the TV so we can watch the movie together. I would never have known someone could say all that without saying anything at all, but now I know how much we say to each other even without speaking. I know the value of just being there, next to someone, speaking the shared language of family that does not require you to get all the words right to get your point across.

If Lincoln had been born without Down syndrome, I would never have known that we desperately needed someone to remind us of a few important things. I would never have known that sometimes not having your prayer answered is a miracle in itself, that sometimes what you think you want has to be swept aside to make room for what you need. I would perhaps have heard people quote something like that and nodded in agreement at the sentiment, but I never would have known it, really known it with the understanding of someone who has lived a truth rather than just read it in a book. And I don’t know that I would ever have been able to believe that there was a plan for my life, as I’d always been told, until I saw the plan myself. I don’t know that I would have seen my faith revived as it has been in the past few years without experiencing an event so unexpected and unsettling that it reminded me why I needed to believe in the first place.

And finally, the first lesson Linc’s diagnosis taught us. Without those early days in the hospital, trying to make sense of our new role, Sam and I would not have learned firsthand that you don’t have to run the whole race at once. You just have to take each step, each moment, one at a time. Focusing on the moment at hand frees you from worry over the next two thousand steps ahead, and forces you to see, and hear, and breathe in the beauty and value of each moment of your too short life.

Parenting in Absentia

2011-10-13T03:42:00.000-05:00

Those of you who know us well understand that Sam and I don’t do much the traditional way. We got married young, but we did it because we were in love, not because I was knocked up (imagine that!). Sam is almost as much of a feminist as I am. He cooks, and I use power tools. He takes care of the kids all day while I’m at work, and I take care of the kids on the evenings and weekends while he is at work. Because of our non-traditional schedule, we end up with stories like Sam sitting at story time in the local library and hearing “Hello to all the mommies. Welcome mommies! Oh, and the daddy. We have a daddy here today!”

Sam is an amazing father, and he has done things for our boys that I would never have taken the initiative to do if I were the one home with them all day: he taught Nico to read and write, he has done countless hours of therapy with Linc, he has taken the boys hiking and explored every park in town even in 105 degree heat. Our boys have had such an active, engaging childhood thanks to Sam. Sure, he occasionally put our 2 year old in his brother’s 5T shirt by accident. True, some days when I walk in the door, Nico can’t wait to tell me about the episode of the Colbert Report he and daddy watched together that day. Other days, he tells me about the lizard they spent 20 minutes looking at together. And still other days, I hear how they’ve been dancing around to musicals all afternoon. The point is that he’s made life an adventure for our kids.

It’s easy to feel a little disconnected from them when I’m stuck at work all day, chained to my desk, but Sam does such a great job of keeping me updated on their adventures. He calls me and tells me they are headed to the grocery story because the pasta he’s making for dinner just won’t sing if he doesn’t get some basil to throw in it. Or, he’ll send me a text message with a picture of their trip to the Natural History Museum, the one where he encouraged Nico to break into an exhibit for a great photo op.

Then, for the record, he followed it up with a call to tell me how Nico just about peed his pants when he turned around and saw the mountain lion right behind him. But he assured me, "I told him to never do anything like that when I wasn't around to give him permission." Good? I think? Maybe I'm being a stick in the mud, but I tend to think we should be telling him never to break and enter.

This morning, he sent me an email titled “While dad puts up groceries…” Inside, the text that accompanied the picture just read, “Did you know this tub was full of rain water, Dad? Awesome huh?”

And later in the afternoon, after picking Nico up from school, he sent me one final update on their day: “Linc is exhausted (you know how you get after swimming).”

See how technology is helping our family stay connected? It’s almost like being there, breaking and entering, sarcasm and all. Hooray for the electronic age.

A Living Language

2011-10-12T02:18:00.007-05:00

This post is from Linc's dad, Sam.

I have long been of the opinion that censorship is far worse than vulgarity. I am a fan of Free Speech. I believe that without the First amendment, none of the others matter very much. The notion that I have a right to say anything I wish, regardless of whose feelings are hurt, is close to sacred in my heart. It is a freedom, along with the right to vote that makes us all citizens rather than subjects. Men and women have died for this idea, that our government has no right to tell its citizens what to say or how to say it.

Our culture, on the other hand, is another matter. We enforce all kinds of rules upon one another. There are expectations of what is acceptable and what is not. Language is a living, changing thing and there are cultural laws, taboos, which are not against the in any state of the Union. After all, it is not illegal to say the words ‘nigger’ or ‘faggot’ or ‘kike’ out loud, but just writing those words turns my stomach, and it should. We have decided, as a culture, that those are destructive, hurtful, demeaning words and therefore they are unacceptable. Most of us no longer say them. Most of us don’t even think them silently in our heads.

I am thrilled to say that in the four years that Lincoln has been alive, another word has begun to enter that list of the taboo: ‘retard’.

Comedians have widely abandoned the word, even though it was once a guaranteed laugh. Movies now only throw it in for shock value or to paint a character as bigoted or uncaring. A few weeks ago I heard a national talk radio host fly off the handle at a caller who used the word on air. Even public figures as sensitive to public opinion as Rahm Emanuel and Rush Limbaugh have faced considerable popular outrage for using the word.

Our culture has decided, with head-spinning speed, that the word is no longer acceptable. It is not funny, it is not endearing, it is offensive. Labeling something ‘retarded’ is rapidly becoming a sign that the speaker themself is a small, ignorant, backwards person, a person to be avoided, a person for whom you need to apologize to your friends and family.

That label is disappearing. Its sting is beginning to fade away. My fear that my son will hear it in casual conversation out in public or bandied about on TV is vanishing. For people like Linc and for the families of people like Linc, this is a very good thing.

Lincoln, however, doesn’t care about the word right now. He can’t talk yet remember? He has no idea how deeply words can wound. The power of words is still a mystery to him. I could call him that word all day long and he would never think less of my parenting skills. I might even perversely be able to get him to try to repeat it out loud today and he wouldn’t recognize the betrayal. Eradicating the word from the English lexicon has nothing to do with Lincoln’s feelings today but it has everything to do with his community, and it has everything to do with his future.

Liz and I don’t know what it must feel like to be a person with Down syndrome and hear that word fired off. We also don’t know what it must be like to be black or gay or Jewish when those other three words that I made myself type at the beginning of this post are said out loud. But we believe the testimony of those who know intimately how much it hurts so we don’t say them. As adults we understand that the way you talk about someone can dictate how you treat them, even how you think of them. The R-word, as we call it, makes all people with intellectual disabilities feel diminished, ridiculed, and threatened. Worse, it makes the people who say it think of those people as alien, as less important, even as less human.

Our culture is quickly (more quickly than I thought possible) beginning to realize that this way of speaking about one another is unacceptable because this way of thinking about one another is unacceptable.

‘Retard’ is derogatory, plain and simple. It is no longer a clinical nor legal description of anyone. Medical documents no longer use the term, and the government no longer uses it. It is only now used as a technical term (to slow down or decelerate) or it is used as a disparaging description of a human being. We all know what it means. If someone says that person over there is a retard, they mean that they are stupid, foolish, incompetent, unworthy of compassion or understanding, that they are someone to be despised and dismissed. They also mean that that is how they think of Lincoln. Next time you hear someone use the word, substitute it in your head with my son’s name. I’ll bet you won’t laugh then. I’ll bet it will be hard for you to keep from saying something like, “Please don’t use that word like that. I know someone with Down syndrome and that hurts.”

Good. I hope you say something. Please say something. You are a part of the English language. You are a part of this living, changing thing. You are a part of this culture. Help me change it for the better. Help Lincoln live in a world where he’s no longer a punch line.

This past April, Timothy Shriver (JFK’s nephew) went on HBO’s ‘Real Time with Bill Maher’. I watch the show on a regular basis even though, for a while, it seemed like Bill couldn’t do an episode without dropping an R-bomb. Shriver is the Chairman and CEO of the Special Olympics and was one of those who called for a boycott of the movie ‘Tropic Thunder’. I saw the movie and I thought it was funny, but his point is clear. The word is derogatory and it is only funny if you think of people with intellectual disabilities a certain way. You have to give Bill Maher credit for having Shriver on in the first place to talk about this. He knew it would be a hard topic and one that might not paint him in a great light. Also, remember that Bill has to play Devil’s advocate in order for the interview to go anywhere.

The interview is 8 minutes long, but if you’re pressed for time, just skip to 5 minutes in.

Mr. Shriver says, in three minutes, what I have just spent over 1,000 words trying to say here.

Bill Maher has not used the word on the air since.

Long live English, a living language!

Please visit http://r-word.org/ if you’re interested in helping even more.

-Sam

Sometimes You're the Windshield, Sometimes You're the Bug

2011-10-11T02:02:00.000-05:00

And sometimes you're the squeegee forced to clean bug guts off the windshield so many dang times that really you are starting to consider looking for another line of work because this is getting ridiculous already.

What I'm trying to say is I had a hard weekend. A hard, gross, stomach flu filled weekend. We thought Linc was feeling better after a minor round of stomach stuff last week. His appetite was back, he had energy, he wasn't dispensing disgusting fluids. He seemed fine until we took him to a birthday party on Friday night where he ran around a park, guzzled apple juice, and then unceremoniously hurled all over me. Good times.

I don't know what it is, but our kids have the uncanny knack of only ever getting nauseated on my watch. Oh no, they'll have the sniffles when Sam is around, maybe an ear infection or something any rookie could handle. But the projectile vomiting they save exclusively for me. It is the strangest thing. It's like they save it up, and as soon as Sam heads out the door, their tummies let loose.

It's just really not my favorite thing about parenting. Needless to say, by Sunday afternoon I was feeling a little cagey and ready for a break.

(Now, I better stop and clarify something here. Linc does this to himself. If we did it to him, it would be child abuse. But when he climbs in the dog's crate and insists on shutting himself in, it's not abuse. No, then it's go get your camera time. I thought I should clarify that. I am an obnoxiously claustrophobic person and would never shove a baby in a tiny space for a picture. But, if he's going to do it to himself and scream when I try to take him out because there's not enough air in that tiny space, then we might as well get photographic gold out of it is all I'm saying.)

Anyway, as I mentioned, it was a traumatic weekend. On Sunday afternoon, before Sam had to go to work and leave me alone in the house of digestive horrors again, I ran away for a few hours. This parenting/working/keeping a marriage alive/keeping a house from falling down around your ears stuff is hard. I couldn’t wait to get in the car and get away from there for a while. And then, I sat in the car and cried against the steering wheel because I felt guilty for leaving.

It will not surprise anyone who knows me well that when I had a little time to myself, I spent it shopping. I walked through the store and tried to enjoy not having anyone tug on my pants chanting, “Mom mom mom mom mom” without shutting up long enough for me to answer. I touched shirts that had never been vomited on. I tried on shoes that had never stepped in presents left by adorable puppies who happen to be about 93% house trained (which is close, but unlike the horseshoes and hand grenades thing, not quite as effective bottom-of-the-shoe-wise as 100% trained). I called Sam and cried over the phone that I was sorry I was such a jerk that I had to get away before I lost my mind, but I just had to go somewhere that didn’t smell like a sick room for a little while. He told me to stop feeling guilty and enjoy myself.

When I came home (with the perfect pair of boots for fall, but that’s a story for another day), Sam was on his hands and knees scrubbing the floor. At first I thought someone else had erupted and he was mopping up the carnage, but it turns out he was just cleaning as a gift to me. The floor was shiny, the kids were asleep, the dogs were playing outside, and just like that I was transformed from crazed nurse-slash-janitor back into the partially sane, generally peaceful gal I usually am.

By the evening, Linc was pretty much back to his old self, too. We put on a musical and he sat next to me on the couch, alternating between smiling at the show and ordering me to “Wawdat!” (watch that) while pointing up at the TV. When a new song began, he would gasp excitedly and look at me with wide eyes, then smack my leg, point to the screen, and remind me to “Wawdat.” I tried to get him to dance with, but he wasn’t quite up for that yet so I just sat with him and pulled him onto my lap. I could feel that he’d lost noticeable weight from being sick. Whenever I got too involved in studying him, staring at his little hands or putting my nose in his clean hair, Linc would grab my cheek and point my face to the TV. “Wawdat.” We are watching a movie, mom. Pay attention.

I went to bed feeling transformed. Who knows if it was the sickness passing, the support from my dear husband, the retail therapy, or the movie date with Lincoln that did it. Or perhaps it was all of the above. Did I mention this parental juggling act is hard? Sometimes you have to admit you’re in over your head. Some days I realize anew that I will never have a really clean house from top to bottom all at the same time. From time to time, I will get vomit in my hair. At least once a month, I will have a day where I feel like I am the bug and the whole world is one big windshield screaming towards me.

But those same ties that leave me feeling caged in and needing to break free some days are the ones that make me feel safe and found and protected all the other moments. That’s what this weekend reminded me. Even when my family makes me want to pull out my hair in frustration, they are the ones I want to comfort me and make it all better. Sometimes I need to step away to see it, true, and a little shopping does always clear my head, but in the end, nothing heals me like coming home. It may be dirty and stink of little boys and half trained dogs, but this crazy 90 mile an hour windshield is where I belong, after all.

And now, because it's stuck in my head, I offer you the Mary Chapin Carpenter version of "The Bug." I tried to share the Dire Straits version, but I just couldn't do it. I'm not that cool/too cool depending on how you look at it...

Expectations

2011-10-10T02:18:00.003-05:00

This post is from Linc's grandpa, Larry.

I remember those first days in the NICU. As Sam and I got into the elevator at the hospital, he shared with me that he guessed he would just have to lower his expectations for his new son, Lincoln. I had to laugh as I told him that with 5 children, Mary and I had done that 5 times and none of them had Down Syndrome.

It is funny that we have expectations at all, but I want to share how Lincoln showed me not to expect anything of him at any time. He will give it to me when he is ready. We took Barry and Sam’s families to Sea World last year. We knew the other children would love it, but were curious how Lincoln would react.

The first show was Shamu, the killer whale. Liz and I very intelligently sat right outside the “splash zone” with Linc while everyone one else sat and waited to be drenched. I am so glad I did. This is what I got to experience. As the whales soared out of the water, Lincoln would try to soar out of his mother’s arms. He cheered, clapped and talked to the whales. It was so unexpected, that Liz actually cried. I couldn’t stop laughing and smiling.

We went through the park and watched as he laid out on the shelf just like the other children to feed the dolphins and he laughed as Sam helped him pet their noses. He even sat in the giant aquarium and was mesmerized by the floor to ceiling display of swirling fish.

But, the highlight of his unexpected reaction to Sea World came at the end of the evening when we stopped by to see Shamu’s final performance for the night. We arrived late and had to stand at the back of a very large crowd. We hoisted the children onto shoulders and I got Lincoln. As Shamu appeared, Lincoln’s reaction was full of sheer delight and excitement to see his friend again. He bounced on my shoulders, pounded on my head, threw his arms up as he loudly sang with Shamu and then he would twist my ears in excitement. It was like having a bucking bronco on my shoulders. I could hardly hold him on. The most endearing part of this experience came when I turned my head to get Liz to watch and Lincoln reached down, put his hands on both sides of my face and turned my attention back to his new best friend, Shamu.

Not only has Lincoln met the expectation we would have for any child, he has exceeded anything we thought he could do for a child with Down syndrome. That is because of his wonderful parents whose expectations are for him to know the world and to know how to react to it. We see it every time we are with him.