Goodbye and Hello

We have decided to retire Our Hot Rod Lincoln and create in its place a blog where we can write about more than just raising a child with Down syndrome, and one where we will (hopefully) keep up the writing all year log.  Please join us at These Square Pegs, and thanks for reading Hot Rod Lincoln!

Mile 24.5

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

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

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

"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

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!"