Friday, January 30, 2009

Lucky

"You are lucky". Short and sweet. That was all the woman behind us in the grocery store check-out said to me. No explanation given from the smiling stranger.

Was I the lucky one millionth customer served? Was I lucky to get the last package of Dunkin Donuts Vanilla coffee? Was I lucky to not get a cart with a screwy convulsing wheel? No, I knew she was referring to my beautiful rockstar child seated in the grocery cart at the end of the lane. When I've heard similar statements in the past, it's usually followed by the person sharing how they garnered an appreciation for a 47th chromosome like "I have a grandson with Down syndrome" or "I teach special education". But this woman offered nothing further. She was gazing at Caden still so I too turned to join in her admiration.

And there he was in all his glory. Suffering from a feverish cold with snot running out of his nose, both hands shoved into his mouth so he could chew his thumbs (I think this helps when his ears hurt), droning "aaa, aaa, aaa, aaa" while kicking the plastic shopping bags hanging beside him. I wondered how many people must be questioning why I had him out of the house but after 2 days holed in from the weather, we were out of the basics. I searched for a tissue wishing he was feeling better to appreciate this compliment.

Caden spotted us eyeing him and his face lit up with a brilliant smile as he waved. Then the cashier said "awwww" which sent him into high ham mode. He double-waved to both the shopper behind me and the cashier joined by a flirty sideways "hiiiiiiii!" Then he brought both hands up to his mouth and blew them simultaneous kisses, which of course made his new fans melt. "He's so cute!" "I want to take him home". Now the lady checking out beside us is joining in with "What a darling!" as Caden reached out to hold her hand. Just like that, their hearts were stolen. To seal the deal, he turned back to me with a big you're-still-my-favorite hug and a gentle stroke of my hair. Oh, how I love this boy.

I turned back to the woman waiting in line. She was clutching her chest with both hands. "Yes," I said, "I am lucky."

Thursday, January 29, 2009

How's this for irony?

Caden currently starts each day by dancing to a couple songs usually accompanied by his jingle stick. Before breakfast or Elmo, he's signing for "music" and "guitar". He loves anything with a fast hard-pumpin' blues sound. Personally I find it hard to jam to my best ability before a shot of coffee but Caden seems to wake up raring to go. Coincidentally, his absolute favorite band goes by the name of.... Downchild.

Tuesday, January 27, 2009

What to say to a pregnant woman

The worst pregnancy advice is nearly always unsolicited. I heard the generic stuff: at least 100 solutions for morning sickness, herbal remedies to ease the crying, teas for sleeplessness, how to pamper The Tank so he doesn't feel forgotten (are you kidding me?). There were the comments on my "cute" tummy bulge or the glance to my behind followed with "Don't worry, you'll lose that after the baby is born". And apparently being pregnant is open season for any ol' stranger to ask how much weight I'd gained or if I planned to breastfeed. Then there were all the people that felt the need to touch my belly, or bless it. I even had one woman tell me my belly had a colorful but very peaceful aura around it; could she meditate with it? Yeah, let me get back to you on that one.

A lot of women wanted to relive their pregnancy with me: it was the best time of my life, I loved being with child, enjoy it, it goes so fast. And a small hard-core group wanted to share every gory detail of their incredibly difficult birthing experiences. Thanks for the warning that I'm riding an express train straight to Worstpainimaginableville.

I had people ask if it was a boy or girl and then declare it was wrong to find out the sex of the baby in advance because some things should be a surprise. You want a surprise? How about the health of the baby? It truly is a miracle that should not be taken for granted when any baby is born healthy. Wondering whether my son would be born with hydrocephalus, a cardiac calcification, kidney nephrosis, et al. was enough of a surprise for me. In fact, I had so many unknowns happening prenatally that that one known, my baby was a boy, gave me something to hold onto.

Most of these people did not know my prenatal diagnosis. I know that each and every one of them meant well and I thanked them for their thoughts. But the worse advice I received was actually from a mother to a special needs child who did know Caden's diagnosis. She told me, "Have another child right away." Here I wasn't even finished with this pregnancy and the baby was already being written off. It suggested that I wouldn't be happy with him and should pin my big dreams on the next one. It was completely devoid of hope. There was no herbal remedy in existence to stop the tears I cried over her words. In her defense, that was what worked for her and she was sincerely trying to help. But it certainly didn't feel appropriate to share that with a woman who still had 4 more months in her pregnancy. I hadn't had a baby shower yet and her words left me wondering if I should even bother.

I look back now and appreciate all the concern expressed to me. But I heard enough of it. I didn't want any more counseling, advice, warnings, guidance, maternal bonding or sympathy. I wanted congratulations.

Monday, January 26, 2009

Followup to 25 Random Things

To answer Gayla's questions about my 25 Random Things:

The turnstile story:

When I was 29, I vacationed in Europe accompanied by my 17 year old sister. We spent several days in Paris surviving on my college French. On the first afternoon we purchased metro passes at a post office and wanted to use them right away to see more of the city. We stopped first however at a cafe and then tried out one of those public rest room contraptions that are like upscale Johnny Blue's requiring payment to enter. The unisex restrooms with guys standing right there at the urinals as you walk in were freaking me out too much. By the time we hit the subway station it was rush hour.

Having never been through the process before (really, I'd never been on a subway anywhere before much less internationally), I tried to watch those in line before us. It appeared that I was to stick my tiny metro pass into a slot and then enter the turnstile. So when it was my turn, that's what I did. The turnstile made 1/4 of a revolution and stopped. I could go neither forward nor backward. It wasn't one that hits you at the hips so I couldn't jump over. I was practically caged. Everyone behind me was yelling and shoving but there was nothing I could do. Unfortunately my teen sister made it through and was already on the platform waiting for me as our train arrived. I could see her panic as she knew NO French and would have no clue how to ask for help. I was absolutely shocked that no one would help me. They simply moved over to other lanes and went about their day. As is usually the case with me when I get in nervous situations, I broke out into the giggles which surely gave the appearance of lunacy and didn't help my cause.

Finally after the largest portion of rush hour had passed me by, a nice young gentleman approached and offered assistance. Apparently, after you put your pass in the slot, you had to pull it out of a second slot BEFORE entering the turnstile. At least that's what I think I did wrong though it is possible it was just a malfunctioning machine. At any rate, I was able to use the metro for the rest of our journey without drama.

The naked skydiving story:

I had been asked to take a member of the band Diamond Rio skydiving during one of their tour stops (hosting Diamond Rio for a day is another story altogether). I drove him to the closest drop zone but it was too cloudy and no one got a jump off. But sitting in the hangar all day gave me the itch to try it myself. I returned the next day with a girl friend and we each did a tandem jump where your instructor is attached to your back to make sure you don't screw up. Absolutely amazing breathtaking fun.

Unfortunately I left my camera there and had to return the following day to retrieve it. This is my third day at this airport. My instructor from the day before asked if I was back to jump again but it was too expensive for me to repeat. He offered that there was a way to go for free.... go naked. Ironically enough, the day before I had been wearing a Mystic Tea tshirt. Remember their old slogan? Yeah, it was "Go Naked" and my instructor badgered me about wearing that shirt, talking the talk but not walking the walk.

It was the summer after I turned 30. I was divorced, no kids, single and prepared for a midlife crisis. I didn't know any of these people and didn't plan to see them ever again. So I asked myself: why not? Who gets to do something like this on their life list? It was very out of character for me. I don't even like to walk around the ladies' locker room at the gym naked. It struck me that that was exactly why I needed to do it: to get over my hang-ups and live a little.

Now typically the instructor straps you into your harness in the hangar before you walk out to board the plane. In this case, Paul (forever I will remember his name) and I went into a utility closet. He was extremely professional but boy was he sweating. Then I put on a big shirt and pulled up my shorts as far as they would go but I looked like a hunchback. It was pretty obvious to the 50 or so people there what was about to happen when we walked out. They broke into cheers and grabbed their cameras.

We boarded the plane with two solo male jumpers and the male pilot. When we reached altitude, the pilot said it was time to jump. I took off my clothes and Paul stuffed them down his jumpsuit. Surprisingly the other two men avoided looking in my direction though I caught the pilot glancing back a few times. Then it was our turn to jump. No it didn't hurt. No it wasn't cold. No the straps didn't slide around as they were super tight to begin with. I was amazed at the cascading ripples of skin on my thighs caused by the sheer force of the wind. Skydiving naked might sound sexy in concept but let me tell you, the human body in free fall is simply not attractive. Things are not where they are supposed to be.

As we got closer to the ground, I could see people running out of the hangar and, I assumed, armed with their cameras. Paul threatened to land me right at the entrance and I countered with a threat to permanently maim him. We ended up landing far off in a pea field where I had plenty of time to dress before the spectators approached. The photos do exist but they are mostly of me hugging my knees in a tight ball waiting for Paul to get my clothes out of his jumpsuit and from an acceptable distance to blur important parts of the body.

There is a term used by skydiving enthusiasts for any person that doesn't understand their sport: whuffo. It represents the question they are constantly asked: "whuffo" you want to jump out of a perfectly good airplane? I've discovered after my two jumps that I grow more when I stop questioning why and ask why not instead. If you ever get the opportunity to skydive, go for it. Should you also have the opportunity to do it sans clothing... why not? Live a little.

Friday, January 23, 2009

25 Random Things

I got tagged on Facebook to list 25 random things about myself which I thought I'd also share here for grins:

1. I taught country line dancing at a saloon for a couple years.
2. During that same time period, I also taught an early morning spinning class before heading off to my day job.
3. I can no longer survive on so little sleep.
4. I have participated in two 24 hour mountain bike relay races, numerous 5k's, 10k's and a half-marathon, many century (100 mile) bike rides but can't swim more than a weak doggie paddle. Or ski.
5. I got engaged on the Great Wall of China.
6. My biggest pet peeve is sloppy eatters who chew loudly. I lose my appetite.
7. A close second is people that park illegally in handicapped spots or the loading zones next to them. I have actually seen this at my gym. The gym!!!! You're there to exercise and you can't park a few spots over? FIND ANOTHER SPOT!
8. I co-hosted a Nascar radio show for one season which gave me exclusive access to the drivers and crews on race day. Mark Martin is my fave.
9. I have been hunting with a shotgun and a bow. I have bagged 3 deer.
10. Everything you need to know about life can be learned while trekking alone through the Himalaya's for 3 weeks.
11. Such as if you haven't showered in those 3 weeks, yak dung fires start to smell rather homey. Though it still stings your eyes.
12. I have been skydiving....twice.
13. Once was naked.
14. Bungee jumping is infinitely more terrifying than skydiving.
15. The only bone I've ever broken in my body is my nose, which isn't even a bone.
16. I really miss the Fun Bunch, the Hogs, the Diesel Riggins, the fastest man in the NFL Darryl Greene, Theismann and Coach Gibbs. Those were some awesome Redskins football days.
17. I can ask for the restroom in 8 different spoken languages, plus sign language.
18. I was on a plane returning from Peru when the first tower collapsed on 9-11. Instead of Baltimore, we were taken to Miami where I was stranded for 3 days in winter clothing (Southern hemisphere has opposite seasons after all) and only the $40 I had planned to use to get my car out of the longterm parking lot. I've never encountered so much spontaneous charity and kindness.
19. In all my travels around the world, the only thing ever stolen from me was a ballpoint pen.
20. I got stuck in a subway turnstile in the heart of Paris during rush hour. My French isn't stellar but to this day I'm positive that everyone around was cursing me. No one came to my aid (including my sister) and they seemed quite content to step around me while I withered away from malnourishment.
21. I was stabbed in the spinal column EIGHT TIMES for an epidural that ended up only partially working on the left side of my body while my right swarmed in pain. If there is a next time, I will not bother.
22. During my first wedding (huge humiliating what-the-hell-was-I-thinking mistake), there was a severe summer thunderstorm approaching. As I started to recite my vows, a crack of thunder shook the building and the sound is very audible on tape as is the nervous laughter. Do you think that was a sign?
23. I am donating my hair to Locks of Love on February 16 and it will be the first time that someone other than my mother has cut my hair.
24. When I see my husband playing with my son, I fall in love with him all over again. Every time. He's an amazing father.
25. My son is the greatest thing that has ever happened to me.

Wednesday, January 21, 2009

The Art of Friendship and Acceptance

My heart is bursting. Caden got his first love letter today. Well, a preschool version of a love letter anyway. When I picked him up at school, one of his classmates came up to me with an elaborate work of art involving stickers, stamps, paint and metallic glue. Very colorful and I'm sure laborious for a 3 year old to create. I knew this was not a project they had done at school. The little girl said "This is for Caden" but as Caden approached us she handed it to him herself. He was obviously impressed and declared "ooooooooo!" I told him to thank his friend and they went into a big hug with big smiles. I burst into tears as did their teacher. I thanked the other mother who replied "My daughter draws pictures for Caden all the time at home and sometimes asks for help to write him letters. Today I thought I'd bring one in to actually give to Caden."

I think this artwork will hang on our refrigerator for quite some time.



Edited to add: Per Kristi's request in the comments, here is a picture of Caden holding his cherished artwork.

Thursday, January 15, 2009

Farmer Caden


video

This is Pennsylvania's equivalent of a State Fair. It's called the Farm Show and Caden had so much fun seeing all the animals that now I feel like we should move to a farm. Or at least buy a goat for the backyard. He didn't even want to stop to eat. That's saying something!

Friday, January 9, 2009

The Special Needs Trust Blues

The Tank and I are trying to finish up our estate planning with our lawyer. (sidenote: estate planning? they think I have an "estate"? pshaw!) In addition to the decisions over naming an executor, health care agent, power of attorney, etc there is the added hand-wringing over establishing a special needs trust. Should we both die, all of our assets would go into this trust for Caden's care rather than as a direct inheritance to him. This protects the money so he isn't taken advantage of or doesn't spend it unwisely. It also assures that he will not lose any of his government-sponsored services. I so appreciate the peace of mind that comes with getting this completed. We will have a guardian for Caden and our money won't get tied up in probate for months unavailable to him.

But....sigh...it makes me depressed to think about Caden losing his parents and how hard the adjustment might be, especially if he had to move his residence, his schooling, his therapists, his doctors, etc. Those feelings are compounded by the guilt produced with the creation of a special needs trust. My dream is for Caden to be able to live on his own as an adult, have a job and be as independent as possible. That is the motivation for all the work we do with him now. But I feel like this trust is a betrayal to my son because we are assuming incompetence. We are assuming that he won't be able to make financial decisions or hold a job that provides medical insurance for him. It is as if we are writing off his potential at the ripe young age of 3. It gives the impression that we're not walking the walk, just talking the talk. Is it pessimistic or just being realistic to create this special needs trust? Either way it makes me feel like I'm not being honest with Caden. Curse you, necessary evils!

Wednesday, January 7, 2009

Lessons of Africa


A friend recently asked to see some of the photo's of my 2002 trip to Kenya and Tanzania. Since I went through the effort to scan them into my computer (this was pre-digital camera days for me), I thought I'd share them here as well.

I spent 3 weeks in Africa climbing Kilimanjaro, Little Meru and Mount Meru. I safaried in 3 national parks and hiked through the Maasai countryside. I camped the entire time and twice had to hire an armed guide (predatory animals surrounded us). I traveled to Kenya alone but crossed the border into Tanzania with a bus full of people that spoke only Swahili. Finally arriving in Moshi, I met a group of travelers from England with whom I climbed Meru and Kili. Then we parted ways and I reversed course back to Nairobi alone.

In retrospect, not a good idea to travel as a single female. But what's done is done and I have these amazing pictures to show.




Elephant in Ngorogoro Crater
Punda milia (Swahili for zebra)
Lions finishing off a wildebeest in the water
Bushwhacking down into Empakaai Crater through fierce stinging nettle-type plants and vicious safari ants. Aloe, please!
On a couple occasions, I'd be brushing my teeth in the morning and spot Maasai warriors in the mist watching me. Or hear animals in the bushes. Going to the bathroom behind a bush was always a bit of a gamble.
We camped one night on the outskirts of this Maasai village called Bulati, approx. 8000 ft. in altitude. The village elder blessed me and my journey. Mount Meru is a 15,000 foot volcano. We started the summit climb at midnight from down on the left side of this shot and circled the rim to the peak to watch the sunrise. I took this from the top of its neighbor, Little Meru.
Not much in the daylight but at night this ridge was nothing but terror. Our only lights were our headlamps and the wind came in massive gusts punching us from the side. The ground was constantly shifting underfoot and it was a loooooonnngggg way down on both sides.

Ash cone of Mount Meru

Kilimanjaro rising above the clouds as seen from Meru's summit

Sunrise behind Kili from Meru's ridge

Sunrise on the roof of Africa, Kilimanjaro, 19341 feet, -20 degrees without windchill factored in. My coat is open because I had to keep my camera tucked down my shirt so the batteries wouldn't freeze. My fingers were so frozen and useless at this point that I couldn't grab the camera to retrieve it but had to loosen clothing enough that it would drop out. Very very very cold but very very very beautiful.

I cannot express enough how amazing it was to travel to a land where nothing in the landscape is remotely similar to the flora and fauna of my own backyard; where many times I had to rely on the kindness of strangers (like the border crossing where all the luggage was removed from the bus and searched which is routine but I thought we were being arrested till an elderly man took me under his wing); where I met some of the most noble people on our planet amongst the Maasai warriors; where I met some of the poorest people on our planet amongst the Maasai warriors with no electricity or running water and wearing sandals cut from used tires; where every moment of every day I was stunned visually and culturally. And I'm surprised to find that many of the lessons I learned about myself and what I value in life on that journey are so similar to the lessons I've learned in my journey with Caden. All I need now is right here at home.

Monday, January 5, 2009

When math is good

You probably know that most people have 46 chromosomes with 23 coming from each parent. However Caden has 47 chromosomes. Where did that extra chromosome come from? Since there is a correlation with maternal age and the occurrence of Down syndrome, science suspects that the extra chromosome is contributed by the mother's egg somehow. Follow me on the math here: then Caden has 23 chromosomes from The Tank and 24 chromosomes from me. That makes him 51% Mommy, correct? That could be entirely inaccurate and slightly presumptuous but when I look at my amazing, brilliant, talented, funny, and beautiful little boy I start to like that math. I have no problem taking credit for that extra chromosome!