September 15, 2012

Buddy Walk

You may remember back in March that I wrote every day for 21 days to help raise awareness of World Down Syndrome Day. It was awesome seeing the support here and elsewhere on social media as you all spread awareness of the date and your love of Sam and people like him. Well, you may not know it, but October is Down Syndrome Awareness Month here in the US. While I would love to commit to 31 days of writing, it's just not going to happen. The new fall schedules at church, work, preschool, and with therapists are going strong here at Casa Norton and there just aren't enough hours in the day.

Plus, we all know I'd be down to republishing Instagram pictures by the second week.

On October 6th, the Down Syndrome Association of Greater Charlotte will be hosting it's annual Buddy Walk at Freedom Park in Charlotte. This is our first time getting to go to a Buddy Walk since we were dealing with Sam's heart surgery last year. You may have noticed the fundraising thermometer over in the sidebar. We've been raising money for our team for a few weeks now and are super excited about the support people have shown.

So, I'll make a deal with you, Internet. You help support Sam's Club (either by clicking that little donate button and pledging a few bucks, or better yet, come down to Freedom Park on the 6th and walk with us!) and I won't subject you to 31 days of incoherent, stream of consciousness posts. Deal??

Go back and reread that second paragraph.
Back to where I said that this was our first time "getting to go" to a Buddy Walk.

Wrong. So wrong.

We may not have been able to go last year, but this isn't my first opportunity to participate in a Buddy Walk. Not by a long shot. The Buddy Walks were organized nationwide back in 1995. There are over 250 walks that will take place this October alone (and you can click on that link to find one near you). While I may not have always lived close to a Walk, we've been living in Charlotte for over 5 years now, and this will be the first one we attend.

I've said it before, but it's the most striking thing to me that by having a child with Down Syndrome, I suddenly see the world differently. I grew up in a small town, in a small school district, where there is only one public high school. We may have gone to different elementary and middle schools, but by the 9th grade, every teenager in town attended the same school. So, eventually, we all got to know another. And with all the kids I went to school with, I can only think of two people that I knew in my entire school district who had a diagnosis that would categorize them as different, and they both had Cerebral Palsy. I'm not saying there were only two, period. I'm just saying I only knew two of their names. Even then, I can't think of a single person that I knew who had Down Syndrome before Samuel came into our lives.

That means I went 29 years with my only experience with Down Syndrome being the kid who played Corky on "Life Goes On." That's how blind I was to this community prior to last summer. I know they were there. I just couldn't see them.
This past weekend, I helped chaperone a whirlwind trip to Disney World for our youth group. I was there for less than 36 hours, but I can tell you that I saw at least 5 people in the Magic Kingdom who had Down Syndrome. Five that I know for sure were carrying around that extra chromosome, and countless others who were dealing with other diagnoses. Four years ago, Travis and I spent 5 days at Disney and I can't recall recognizing a single person who had DS. I'm sure they were there.

I just couldn't see them.

And that's what the Buddy Walk is all about for me. It's great that we help raise money for the Down Syndrome Association of Charlotte (which has been an amazing resource and community for us) and the National Down Syndrome Society, but really, I'm just going to have my vision corrected.

Just to see and be seen. To see those in my own community who share this diagnosis with Sam. To revel in his possibilities, and to share the road map of the first year with someone who just joined our special group. To maybe open someone else's eyes who is walking around just like I used to.

Because how in the world will we ever be able to fight for those among us who can't fight for themselves if we don't even see them?

Help me show Charlotte and the country what Down Syndrome looks like. Hope to see you there.

PS. Aren't these pictures gorgeous?? Promise to share our story with Inspiration Through Art soon!

September 3, 2012

Dear Luke: Year 3

Dear Luke,

I know most of the time we as parents talk about how crazy fast life zooms past us once we have kids. How we blinked and you went from a tiny newborn to a toddler, and then we blinked again and you were graduating from high school. In some ways it does feel like just yesterday that I rubbed my swollen belly and daydreamed about meeting you. I would say that those first two years just blew past us so fast that I barely remember what they were truly like. What it was like before you could walk and talk and throw epic tantrums. 

But this last year, my sweet boy, has been a year when I felt every single day march by, sometimes in agonizingly slow increments. Our life as a family has been more chaotic and stressful than it ever has been since your father and I started it 5 years ago. Your little brother's arrival in our lives coinciding with your year of being two was not a year I fear I will be forgetting any time soon. While the storms of life washed over us  again and again these past twelve months, the internal struggle of becoming your own person and all the emotional storms that accompany it, pummeled your little brain right along side the chaos of our family beginning a new journey in this special needs world.
You are growing into the little boy I used to just be able to catch glimpses of under all that adorable chunky babyness. As you walked out the door this morning on your way to your first day of preschool, I couldn't get over just how big you were. What once just used to be cute chubby calves is now miles of leg sticking out between the hem of your shorts and your socks. You had a skinned knee, multiple bruises, and stubbed toes underneath those brand new school clothes because you live life hard. You play hard, you laugh hard, you explore hard, you tantrum hard.
You run fast, laugh loud, and let your displeasure be known throughout the land. There is nothing subtle about you, my boy. You are strong and fearless. 

We took you on your first amusement park rides this past summer when we were at the beach. Most of the rides were too small for us to climb in with you, so we had to just strap you in and walk away, hoping you were excited and happy, and not terrified that we'd just abandoned you to be spun around in circles while we watched and took pictures. And while I was nervously hovering by the gate opening, eyeing the emergency stop button and ready to rush in and rescue you, you were laughing with glee and grinning with pure joy as the toy cars went round and round the circle at a sedate pace.

You love the water, whether it's in the pool where you like to show off your swim class skills to the amazement of other parents, or the ocean, where I swear you would have just kept going until you reached the other side of the Atlantic if we hadn't pulled you back.
We spent the last 8 months working with a speech therapist to help you catch up with your delays in talking. For the first two and a half years of your life, you relied on your copious facial expressions to get your point across to people. You have the most expressive little face and that system worked well for you for a long time. You never saw the point in repeating the words we spoke to you. No amount of cajoling or trickery could entice you to give it up. Until one day when you just did. You went through a battery of tests to decide how delayed you were and to start therapy, and literally the next week you started to imitate sounds you heard. And just like that, you were off. With the help of the therapist, you have added dozens and dozens of words to your vocabulary. You made the switch recently from just repeating phrases to initiating conversations on your own. You can tell me what you did or what hurts or what you want for lunch. It has made such a difference in our day to day life.

There are days when your repeated requests for "more candy" or "Hey Mama" make me long for the old days...but I am so glad (and relieved) we are making headway into your speech delays. You are doing so well that you no longer qualify as having a significant enough delay to get help. Way to go, baby.
And while it would be easy to finish this letter here and just tell you how much I love you, it would not be an accurate portrayal of what Luke Age:2 was really like.

I don't know if every child is like this, or if it's just us, but the older you get, your ability to drive me absolutely insane has increased dramatically. Little boy, you know where every single one of my buttons is located and you can punch every. single. one. in 30 seconds or less. My normally even tempered self goes into hiding and my Monster Mom side comes out and wants to drop kick you across the room. I don't know how you do it; I really don't. I don't react to another person on this planet the way I react to you.

You go beyond just pushing boundaries. You hit people when you are angry. You abuse the dog. You abuse your brother. You throw things. You knock things off the counter when you don't get your way. You do things over and over again, even when you know you'll go to time out for doing them.You hurt me. You stand right at the edge of the boundary and make sure I am looking before you cross it just as a giant EFF YOU, Mom. You purposefully kick your shoes off when I pick you up so that I have to stop and grab them before I can continue to strap you into your carseat/put you in time out/get you out of the middle of the street/etc. (More than anything else, this one thing drives me absolutely nuts. It is my parenting kryptonite. I see red every single time you do it. It makes me ridiculously angry.)

I know the year of being two is branded as being "terrible." And I get it. I get why this year is hard. You are past the stage of learning how to navigate this world physically and this new stage was and is all about learning how to navigate it socially. I get how the emotional capacity for patience and empathy can be exactly zero for a two year old. You are figuring things out and your brain is just going in hyper-speed all the time trying to assimilate it all. Just like you used to put every object you encountered, no matter how gross or covered in dog hair, into your mouth to explore, you have been working through every emotion in the book this past year. Sometimes it felt like you were going through a different chapter every other minute. It has been a crazy rollercoaster and I am so looking forward to the day when you are a little bit more...well, a little bit more rational, if I'm being perfectly honest. Rationality has been in a little scarce, especially these past few months.
It's all just part of that process that turns that squishy, floppy Luke into the man you will some day become. Obviously, I've had to become a little bit more philosophical in my approach to understanding you these days. It helps to have a better attitude when I've been at work all afternoon and you spent all morning in preschool. We got to do lunch together and goodnight snuggles. That's just about the perfect amount of time to spend with a two/three year old Luke. Anything beyond that can start to feel an awfully lot like work.
But it's the hard work of being your mom, and I wouldn't give it up for the world.

(Most days.)

I love you, sweet boy. Happy Birthday.