Wednesday, April 29, 2009

Caden is DA MAN!

He will be going on his first date with a girl from his typical preschool to a Wiggles concert. I am so excited for him. The classmate's mother called as soon as the tour date was announced to see if Caden would go with her daughter to the show. She said she had asked her daughter if she wanted to take a friend along and the first name she said was Caden. How touching is that? The mother asked "So you're going? I can tell Katie that Caden will be with us?" After I agreed, I heard her give the news to little Katie who shouted "Yay!" I know Caden will have so much fun at the concert as he loves the Wiggles but this is like a dream come true for me. I worry about if he'll have friends and how he is accepted at school but apparently, I worry over nothing. He's doing just fine.

Monday, April 27, 2009

When Jamie Foxx is your brother...

...you get to be in his music videos! Jamie Foxx has a new video out in which he included his half-sister Diondra Dixon. Diondra has Down syndrome and lives with Jamie. She is shown quickly in a couple of the dance scenes about half-way in (she has a dark shirt on if you want to watch for her) but the money shot is at the end of the video. Jamie has his arms around her mouthing "That's my sister!" to the camera a couple times. Recently on the Regis and Kelly show, he mentioned Diondra and how proud he was of her. He also described her as "4 feet 11 of nothing but pure love" during his Oscar acceptance speech for his role in "Ray". Gotta love a man that loves his sister like that.

Watch the video for "Blame It On the Alcohol" here.
http://www.youtube.com/watch?v=UYc875zkDxg

Thursday, April 23, 2009

More Positive Exposure

At the Positive Exposure lecture, there was one person in the audience I was particularly thrilled to see: my geneticist. After receiving my prenatal diagnosis, we met with this woman to discuss Down syndrome, hydrocephalus and the other conditions the doctors suspected at that time. She didn't tell us much we didn't already know but that was helpful too as she managed to confirm the accuracy of some of the info we'd read on the internet. And you know how that is. You start googling a medical condition and get the wits scared out of you.

She gave us a phone number where we could still get an abortion performed 5 1/2 months into the pregnancy and that was that. No followup from her until the Gifts book was released. I had a book signing at a local Barnes and Noble and invited the genetics counselor as well as other doctors and specialists we had seen. She informed me by phone that she could not attend but would buy the book and was excited to read it. I gave her permission at that time to give my name and number out to any patients she saw in the future with a diagnosis of Trisomy 21. I had not heard from her since.

But there she was in the audience of this presentation celebrating the beauty of genetic differences. It was fantastic to know she was interested. And she wasn't only interested in the photographer's slide show. She was extremely interested in me and Caden. Every time I looked around, she was watching us, smiling. I wondered how often she saw her clients like this, 4 years after their worlds were forever altered. Could she tell that Caden is the best thing that ever happened to me? Could she see how madly in love with him I am? Could she see that he is far from suffering and is smart, funny, extremely sociable and living a big life? As if to emphasis that point, about halfway in to the talk Caden inexplicably turned around and waved to this curious stranger with a huge happy grin.

At the end of the lecture, Caden gave the photographer a hug which included his trademark patting on the back. Over my shoulder, I heard "I am so jealous!" It was the geneticist. I tried to get Caden to hug her too but he was already ascending the stairs out of the auditorium. When we reached the top and crossed over to the exit, I looked back down at the remaining crowd. She was still there, still watching us, still smiling.

Tuesday, April 21, 2009

Positive Exposure


I had the opportunity to not only see this traveling photo exhibit called Positive Exposure but also to hear the photographer share his story and experiences of photographing people with genetic differences. Rick Giudotti is a former fashion photographer that outgrew a work environment where beauty was narrowly defined for him. Instead he saw beauty in people that society defined otherwise. His interest started with albinism and continued into other conditions. Rick hopes his work will challenge cultural stigmas and celebrate the richness of human diversity. He's passionate about acceptance and his work now has him traveling the globe to promote advocacy and understanding. His lecture was moving, his pictures breathtaking. I am still trying to wrap my brain around his professional transformation. He has so much energy for his work and it is clearly his life's passion. If you get the opportunity to attend one of his lectures or see the Positive Exposure exhibit, don't pass it up. If not, check out the website and blog. If only every person had a fraction of Rick's ability to see beauty in all human beings....

Friday, April 17, 2009

The Egg Hunt Champion

We took Caden to a township-wide Easter egg hunt. There were tons of kids in each age group. When it was time for the 3 year olds, Caden was quickly left in the dust as the other kids ran ahead and filled their baskets. Caden managed to score about a half dozen eggs. He would lift an egg, yell "Yay!" and turn to leave like the game was over. We had to keep telling him to get back in there and look for more eggs. With his fine motor skills being what they are, by the time he grasped an egg and tossed it in the bucket (if it went in and he didn't have to start over with picking it off the ground), the kids around us had picked the ground clean. Then Caden started collecting the broken half-shells of eggs and was just as thrilled to find these. I watched as parents huddled around their kids, counting their stash and looking for any prize-winning eggs. Caden was alone on the field by now but still signing "more".

"It's all done, buddy," I told him and walked him over to visit the Easter Bunny. We certainly didn't find the most eggs and may have even found the least in his age group. But this is one of the important lessons I've learned while raising Caden: the final score really doesn't matter. It's about just being in the game at all. And most importantly, having fun while you're doing it. It was freezing cold, bitterly windy, but Caden ran around the park afterwards for nearly an hour with his Easter bucket. He waited in line to hug the Easter Bunny twice. No one was as excited as my son simply to be there that day. In that respect, he beat them all.

Wednesday, April 15, 2009

What's in a name

Caden and I were walking out of gymnastics class when another mother pulled me aside. We hardly miss a weekly lesson yet I rarely do more than exchange smiles with the other parents. They chat with each other during the 45 minute lesson while I am actively assisting Caden with the exercises. They appear to all be friends now and though they are pleasant to us, I feel like an outsider at times. But Caden needs me and the class is about him having fun, not me making friends anyway.

So I was a bit taken aback when this other mother who is five months pregnant gestured to me as we finished putting our shoes on.

"I have to tell you," she said, "Our boy name for the baby is Caden." I hardly knew what to say. I was shocked silent. I think I managed to say something eloquent like "Oh wow."

"My husband heard you call to your son in here one day," she continued, "and he told me that he really liked the name. He kept saying Caden, Caden at home and then we agreed that was the name if we have a boy. We're waiting till the birth to find out the sex. We're going to spell it the way you do too." Another mom had walked over and was now smiling at me as well. She obviously had heard this news already.

I remember when The Tank and I were trying to select a name during my pregnancy. We'd bounce possibilities off each other for reactions: no, reminds me of my crazy aunt; no, reminds me of a bully in school; no, reminds me of a rude co-worker. Many names were eliminated because one of us had a negative association with it. I pictured this woman and her husband at home testing out Caden's name. Apparently neither of them said: no, reminds me of the boy with Down syndrome at gymnastics. The fact that there was no negative association with the name and that this mother seemed genuinely excited to share her selection with me was mind-blowing. I was floored and honored simultaneously. And I still had trouble finding any words to speak.

"What will the middle name be?" was the best I could do. She answered Michael, after her husband. Caden Michael. I told her how much I liked that pairing as my Caden bolted out the door, ready to go home and willing to take drastic measures like running into the parking lot to regain my attention.

There in this woman's belly grows a possible Caden who might have been a Landon or Hank had she not encountered my beautiful son in gymnastics class. It took me so long to absorb her surprising words that I didn't start to tear up until we were driving home. What an amazing compliment.

Monday, April 13, 2009

Being 1 out of 800

"Is that Caden?" the young woman asked me, gushing all over my son without waiting for my reply. We were in line for a child's ride at Hershey Park and this fellow guest was passing by when she spotted us. She looked vaguely familiar but I couldn't place her. She knew my son from....where? Gymnastics, the hospital, pre-school? I couldn't make the connection but she seemed excited to recognize us and Caden was having fun hamming it up with her. Let him have her attention then.

I'm shocked at how often this recognition happens. One day last summer I had taken Caden to a theater and about five minutes into the movie he had a massive diaper explosion. The bathroom didn't have a diaper-changing table so we set up shop on the floor in front of the sinks. In walked another mother with her young son but being in the middle of a fantastic mess, I didn't look up. Then I heard the familiar question, "Is that Caden?" I couldn't believe it. Of all times to be spotted! "We had storytime at the library with you guys," she offered. I seemed to recall her face but her son had changed so much I didn't remember him. It had been 3 years since that 4 week infant reading program but she still knew my boy.

A woman even recognized us from our running route. It seems we pass her house when I attempt to push Caden in the jogging stroller (he's not getting any lighter). I have no memory of ever seeing this neighbor in her yard or even through a window. But here she was asking us to stop by on one of our runs for our children to play together.

This is the consequence of my child being 1 out of 800, which is the rate of live births of children with Down syndrome. The other 799 children may not be as easily distinguished as that singular child whether the exception is due to sex, ethnicity or a disability. Everyone remembers the little boy with Down syndrome at swimming lessons. All of our neighbors recall the little tiger with Down syndrome that came around trick-or-treating at Halloween. We may not know them, but they know us.

Rather, they all know Caden. I once visited our local pharmacy alone. I had been at least a weekly visitor for the last two years at this business and every visit had the pharmacy counter clearing out as the employees gathered around to hug my son. However on this particular visit they had no idea who I was without him at my side. Apparently they never really looked at me before, just my beautiful boy.

Sometimes it catches me off guard to have people I don't recognize speaking to Caden. But he is such a social butterfly and basks in his popularity. And it does give me pause to consider that we are always being watched when we are out. I'd like to think that after all these friendly greetings from strangers that we are opening eyes and hearts as we go about our day. If so, the credit is all Caden's. He was born ready to be an ambassador of good will.

Thursday, April 9, 2009

Everybody's a comedian

This is the message the dishwasher repairman left for us:


Wednesday, April 8, 2009

First friendships

She ran up behind Caden all smiles. He hadn't spotted her yet but the look on her face alone tripped my heart.

We were at the gym and I was dropping Caden off in the babysitting room. He goes infrequently because of all his other commitments (his schedule is busier than mine!) but today he had no school, no therapy, no doctor visits. He absolutely loves to play with other children so that was my motivation to go work out while he played with his "friends", his sign for the other kids there.

He was excited to go and was yelling "Yay!" in the parking lot. A typical preschool classmate of Caden's noticed us entering and rushed over. His back was to her as she beamed with delight.

"Caden, look who's here," I said and finally he turned. He recognized her immediately. It was so clear how happy they were to see each other as they stood closely, practically nose to nose, waving, saying hi and sharing smiles.

The little girl's mother approached, saying "She talks about Caden all the time at home. She loves him! Too bad we are leaving." Our kids said their goodbyes and Caden recovered quickly, running across the room into a playhouse. I was ready to burst. It fills me with such joy and hope to watch my son interact with his peers and know he is accepted. I worry about when/if that will change. But for now, I soak up the purity and beauty of these early friendships. He is just one of the gang at this age and I couldn't be more proud.

Thursday, April 2, 2009

Can't stop my feet...

and I love Caden's "big finish" at the end too.
video