Wednesday, January 30, 2008

On human connections

When I was 7 months pregnant with Caden, I attended a baby shower for a friend. I already knew Caden's diagnosis and was not bothered that other guests at the shower knew too, or that some of them approached me with questions. I actually welcomed the openness. I was genuinely happy for my friend who was expecting a healthy boy and hoped others would be just as genuinely happy for me. The last thing I wanted was pity. Or whispers. Or stares. So I was relieved to be experiencing none of those. But towards the end, one of the guests pulled me aside and said she wanted to speak to me alone. She led me into an empty adjoining room and we sat together on the sofa. She told me that she was a school nurse and had experience with a couple of students with disabilities. Her advice was to have one special thing with my son like she did with each of these students. One thing we shared that was ours alone. I thanked her for her concern and got back to the shower. I can look back now and realize just how absurd that whole conversation was. She had phrased it like it would be an effort but I should really try to have that one special thing. With my own son. Because she was a nurse that briefly saw a couple kids during her job. I don't suppose she ran back out to the shower and gave the other expectant mother with the healthy baby the same advice: hey, make sure you have one special thing with your child. I do know she meant well but it's still such a ridiculous gesture. As if that's all that might be possible between us. Oh, and way to get a woman excited about her pregnancy.

I did get this type of reaction often during my pregnancy and still do. People that need to tell me about their connection with Down syndrome, no matter how remote. "They thought I might have a baby with Down syndrome till we tested and everything was fine." "My neighbor's boss's daughter has Down syndrome too - they say she's really cute." "I watched Corky in Life Goes On back in the 80's." Yeah, thanks for sharing but you're not even close. I appreciate the sincerity but it just gets old. Really, don't get me wrong. I am truly glad when others reach out but you have no idea how much I hear this type of thing. I'm more glad for the people that are open to new thinking about people with disabilities, that are willing to shed the old stereotypes and learn what individuals with special needs are capable of, that aren't afraid to expose their inexperience by asking questions. Because let me tell you, life with Caden is not what I thought it would be, based on my limited prior exposure to Down syndrome. Unless you are actually living it, you can't know. To quote MTV, you think you know, but you have no idea.

On Monday, Caden had no preschool, no therapy visits, no doctor appointments. It was just Mommy and Caden's Day of Fun. It was awesome! We played hardcore, laughed ourselves silly, went to Caden's favorite haunts (the library, the pharmacy - I'll have to explain the draw of the pharmacy in another post), we invented games on the spot which is one of his toddler specialties. I really can't describe how special days like that are to me when we can just hang out and enjoy each other. Like any parent would want. Our relationship is just as rich and deep and meaningful as any other mother-son relationship. I love the way he strokes my hair, the way he hugs me tight when somebody cries on tv, the way he needs me to kiss even the smallest of booboos away, the way his eyes disappear when I make him laugh real hard, the way he holds my hands so we do the motions of Wheels on the Bus together, the way he blows me kisses as he lays down for naptime. And we do have those special things, our secret things, that only he and I share. But let me tell you, there's a lot more than one.

Tuesday, January 22, 2008

Learning to fly

I love this video. A 53yo father and his 31yo son with DS take up skydiving.

I love the dad's quote that he can protect his son from bad things happening in his life but not to the point that good things don't happen. What an awesome attitude.

When I turned 30, I spent a weekend at Skydive Orange in Virginia that involved Diamond Rio, togas, and as my good friend Bisqit recently reminded me, some nudity. That is another story for another post! The important thing is that I got to skydive twice. It was one of the most memorable events I've ever experienced. I hope that The Tank and I are giving Caden wings to soar on so that he too can accomplish whatever will be on his lifetime to-do list. Maybe in 30 years you'll see a video of Caden and The Tank on their own skydiving adventure. Wait, that would make The Tank how old....hmmm....maybe we better make that 20 years from now. Tee hee. Here's Caden's mommy on a tandem jump:

Friday, January 18, 2008

Caden takes aim

Caden's Auntie Liz gave him a game for Christmas that's he's really gotten into. It's a velcro target like a dartboard with 3 balls to throw at it. Can I just say that my boy has an arm? He can hit bullseyes, he can throw sideways at the target without even looking. The Tank and I of course immediately see a high school quarterback in our future. The problem is that Caden thinks it's way more fun to miss the target. He'll purposely throw the balls wildly, missing the target by a mile and then laugh and giggle uncontrollably as they bounce around the room. Soooo, maybe he won't be the quarterback with that game-playing strategy. But he sure does know how to "play" a game. As long as he's having fun, he can throw the ball wherever he wants. Well, maybe not at mommy's head but anyplace else is fine.

Monday, January 14, 2008

When daddies babysit

I came out of the shower this weekend to find The Tank googling presidential candidates instead of watching our mischievous son. While his daddy's back was turned, Caden managed to find the crayons, open the crayon box (his occupational therapist would be thrilled at those fine motor skills), take out the black crayon and enthusiastically color the tv screen and the armoire. Feeling bold, he strolled down the hall passing The Tank WHILE EATING HALF the black crayon before stopping in front of my darling husband to try his handiwork on the white wall, with great gusto I might add. At this point, The Tank finally remembered he was supposed to be babysitting and put an end to the crayon adventure. Fortunately they were non-toxic crayons. However they were not the easy washable ones. The Tank was scrubbing for quite a bit.

My father had his non-babysitting experience that should have served as a lesson. My dad decided to take a nap and hand over control of the house to me and my sister Anna, both toddlers. We found my mom's haircutting scissors and Anna gave dad a new 'do. Keep in mind that this was the glory days of long hair for men, back in the 70's. Still, I thought my little sis did a lovely job as a rookie and was quite proud to show mom upon her return. So if you ever see a missing spot in The Tank's hair, ask him how babysitting went.

Friday, January 11, 2008

Amazing Athlete

I had the honor of being a co-keynote speaker with Brad Hennefer at a Down syndrome conference at Princeton University. He is quite an inspiration, as is his family. He had me really choked up during his presentation and he spoke before my group (3 other Gifts contributors) so I really had to pull myself together. He's raising the bar high for Caden! Oh, don't forget to shop at Wegman's.

Tank Time

Yes, it's get to know The Tank time. I asked him some questions and here are his replies:

As a child what did you want to be when you grew up? Architect

As a grownup, what is your dream job now? Outdoor photographer

If you could travel to one place in the world right now, where would you go? Atlas Mountains, Morocco

What is something you've always wanted to learn/be able to do? Play a musical instrument

If you could have dinner with any current politician, who would it be? (politician??!!) OK, how about W

Favorite movie quote: “Release the Kracken!” from Clash of the Titans

Favorite athlete of all time: Larry Bird

Favorite book: Tao Te Ching

Something you've learned (remembered) from Caden: Everything is magically awesome

If there's anything you'd like to ask him for the next Tank Time (or have him explain from above), post it in the comments section.

Thursday, January 10, 2008

Farm Show 2008

Caden had a really big day yesterday at the Farm Show in Harrisburg. He was squealing with delight and couldn't wait to see what was around each corner. But he didn't pace himself and ran out of steam early. He barely made it through lunch and was asleep five minutes down the road. And I mean deep, snoring sleep. Too much excitement in one morning!

Tuesday, January 8, 2008

Express yourself

I think Caden and I had our first conversation recently. It went something like this:

Caden: (points to me sitting in a chair and signs "up", then points to the front door and signs "out")
Me: It's cold outside, we can't go out.
Caden: (Mr. Smartypants brings his coat to me thinking he solved that problem)
Me: Well, okay, you can wear your coat (so I put it on him, hoping that may pacify him)
Caden: (not deterred, signs "up" to me again and points to the door)
Me: I don't want to go out, I'm in my robe and it's cold outside
Caden: (brings me his dinosaur hat, places it on my head, and motions like "c'mon, let's go")
Me: I'm not ready to go out. I don't even know where you want to go. I still need shoes, the diaper bag...
Caden: (he's already at the door trying to use his toy keys to open it...apparently he's going somewhere with or without Mommy, ready to assert his independence....wait, did he just flip me off????)
Me: What was that sign? Did your father teach you that?

Okay, so that last part didn't happen but the the rest did. And I didn't initiate it. My toddler was bossing me around. I loved it! I even got choked up over this exchange. Caden's speech is mostly babbling but with his signing, he can communicate so much. I am so appreciative that he has this means to share his needs and wants. And commands. It's beautiful, truly poetry in motion.

Sunday, January 6, 2008

Why the title?

Welcome to my foray into blogdom. I suppose I should start with an explanation of the blog title - Ten Squares, Three Squiggles.

The first part is a reference to a trip to Nepal I made alone (I know! What was I thinking?) to hike the Himalayas and trek to Mount Everest base camp. At the time I was told that Nepal was the fifth poorest country in the world but many of the people I met there seemed to be the richest souls alive. They didn't know they were "poor" by American standards. As you can imagine, I learned a lot about myself during this period of massive culture shock. One of the hardest realities to accept was how Type A, results-oriented, hurried, and materialistic I was and how that wasn't bringing me much joy. In fact, it was probably hindering me. In those magnificent mountains, I witnessed how I could get so much more out of life with so much less in nearly every imaginable way. And I discovered that I really could survive on ten square sheets of toilet paper a day. Even with a runny nose. You better believe I hugged my indoor plumbing when I returned home and yet, I didn't want to lose the peace and lucidity I experienced in those oxygen-deprived days.

As for the second part of the title ... have you ever seen your DNA karyotype? It's basically your genetic profile, a map of you at the most basic level. Most people have 46 chromosomes, divided into pairs. Those pairs are then laid out from longest to shortest and numbered 1 to 23. On paper, it looks like a bunch of little squiggles. When I was 20 weeks pregnant with Caden, I had an amniocentesis performed due to some "markers" discovered during a Level II ultrasound. The resulting karyotype had a big arrow pointing to the 21st set because instead of a pair, it revealed a trio of squiggles there. Trisomy 21. Down syndrome. I didn't know it at the time, but what was supposed to be an undesirable outcome would be one of the greatest gifts in my life. My son has taught me more in his two years than I could ever teach him in a lifetime. He's made my marriage stronger and made me a better mother and person. He reminds me to stop and savor the moment. He is happy. He loves living. Really, what's more important than that? He is my little Buddha, but with an Italian flair so more of a Buddhini.

So in the processes of traveling the world and raising a child with special needs, I've discovered that I am happiest when I cut out distractions and fully enjoy the simplest of moments. Thus the mantra: ten squares, three squiggles.