Ten Squares, Three Squiggles

Vote for Andrea and Reece's Rainbow!

2010-09-14T08:46:00.003-04:00

Caden was fortunate to be born in the United States. He will have access to a quality education, to health care, to a community, to family, to love. He will be able to dream big dreams. But some kids with DS don't draw the long straw. In many countries, children with DS are abandoned in an orphanage. Then around the age of 5, they are transferred to an institution. Some are then chained to their beds, don't go outside, don't know the comfort of a hug. Many will die within 2 years of that transfer. I can't help but look at my son and imagine him living, and dying, like that.

This is why I will be voting in People Magazine's Reader's Choice Hero contest for Andrea Roberts. She has created an organization called Reece's Rainbow, named after her son with DS, to help these children from around the world find their forever families through adoption. Over 300 children are growing up loved, healthy, and happy because of Andrea's work.

Vote here daily until October 8. The $10,000 grand prize in Andrea's hands will literally save lives. I look at Caden and think "There but for the grace of God..."

Heh heh heh

2010-07-22T15:30:00.000-04:00

ksl.com - Boy with Down syndrome solves neighborhood crime

I love this story and can totally see Caden doing something like this one day...

Caden turns five

2010-07-01T09:23:00.002-04:00

No more baby. No more toddler. He is a boy. Caden is excited to be five and says that he is "growing up" with great flourish. I am so proud of him and madly in love.

Make photo slide shows at www.OneTrueMedia.com

Close My Eyes, Open My Heart

2010-06-10T09:12:00.000-04:00

I love that Australia has a See the Person Week (see the person, not the disability) and I love how this song incorporates that with the lyric "Close my eyes, open my heart..." This 6 member band, Rudely Interrupted, has 5 members living with disabilities which gives the song much more impact. Caden believes he is a rock star already but clearly this video shows he CAN fulfill that dream!

26 things I learned while running 26.2 miles

2010-04-19T16:11:00.006-04:00

1. Don't run a spring marathon that forces you to train during the worst winter in the last few decades (unless you really enjoy the treadmill).
2. Don't run a spring marathon in the Pollen Capital of the US, aka Virginia. We were so coated with pollen, we looked jaundiced at the end, covered in yellow grit.
3. Always check the inside of your socks very carefully before the race. After 26 miles, even a tiny string will leave an amazing blister.
4. Don't trust the race organizers to have enough energy gel and Gatorade for the duration of the event. Carry your own. We had none for the last 13 miles. Half the race with only water!
5. Don't trust race organizers who describe the course as "fairly flat with some rolling hills" if they are also ultra marathoners and have lost all perspective on what counts as a rolling hill.
6. Pee wherever you want. Those same out-of-touch-with-the-common-folk race organizers will not have enough portajohns. People were jumping in and out of the woods to do their business like antelope. One's level of modesty decreases as the level of pain/exhaustion increases.
7. Expect the event photographer to be planted at the hardest, most grueling part of the course to catch your pain and then post on his website for all to see. That's just rude.
8. Cover yourself in several layers of Glide or other anti-chafe balm. Parts of your body that don't normally touch will darn near light an ember after hours of rubbing together.
9. The couple wearing tie-dyed smiley face shirts and sparkly antenna headbands will run faster than you.
10. So will the crazy screaming lady with pink hair and a sequined miniskirt.
11. Not true for the veteran struggling but still running with the biggest flag he could find. Salute him when you pass.
12. The biggest motivator is your 4 year old son cheering "Go Mommy!" I nearly flew after hearing those words.
13. Wear a watch. Yep, blame those race organizers again for having not one time check on the course.
14. Who thinks a good idea would be to have the biggest climb of the race at mile 24? Apparently my awesome race organizers. I don't know these people, and yet I deeply detest them.
15. If you want the best beer in the entire world, run 26.2 miles for it first.
16. If you want the best massage in the entire world, schedule it for 2 days after that beer.
17. Pack an extra set of knees because yours will be lost on the downhills of the incredibly not-flat course.
18. Do not be demoralized when the oldest female entrant, aged 62, is already in the pizza tent when you cross the finish line.
19. Wear your medal. Why would they give it to you if you weren't expected to wear it? I'm going grocery shopping in my mine.
20. Ever ask a friend what your blind date looks like and get the answer "He's really nice"? Yeah, well, when someone describes a marathon course as "scenic", that's code for "You're better off running through the seven circles of Hell."
21. You might not have the energy to cry at the finish but tears will roll when your son hands you a certificate he made at school saying "Way to go, Mommy and Daddy! I am proud of you."
22. A good post-marathon recovery program does not include running a 10k two weeks later.
23. Take it easy on your stomach for the following few days. And maybe hang close to a bathroom too.
24. There is no greater inspiration for finishing such a monumental task than trying to live up to the efforts of your young son with special needs who always tries his best through every therapy, doctor visit, school day, etc no matter how hard it may be for him.
25. And he does it with a smile because he loves life.
26. What's your excuse, mom? I can't ask my son to work that hard and push himself if I'm not doing it too. I run for my son. Every step of every mile for Caden.

Alice can have her Wonderland....

2010-03-05T16:07:00.003-05:00

.....I'll take Morgan's Wonderland. Check out this new amusement park opening up next month in San Antonio. It is billed as the first fully accessible park designed especially for individuals with special needs. Everything from wheelchair accessible rides to a sensory village to rest areas for service dogs, it seems they've thought of everything but more importantly everyONE. Woohoo! Go Texas!

Up to speed

2010-02-25T15:33:00.002-05:00

So just to update on what we've been up to these last few months, here is a very brief and incomplete synopsis....Caden had scarlet fever, got eyeglasses (that he hates), and had his tonsils and adenoids removed. He goes to two preschools, one where he is the only child with special needs and one for the Early Intervention program where he also receives physical, occupational, and speech therapy. Privately I also take him to music therapy and additional speech and occupational therapy. He's also started soccer and Kinderdance, and we've started the transition process for his entry into kindergarten in the fall. My days seem to consist of chaffeuring him around to his various obligations. Heaven forbid that I do something crazy like find time for myself to train for a marathon (6 weeks away -agh!) Thus blogging fell by the wayside. My deepest apologies. Here's to finding time to share our crazy life with you!

Remember me?

2010-02-08T09:29:00.003-05:00

Hi little bloggy blog. Remember me? I know I've been gone for quite a while but have renewed my commitment to posting to you. Caden has grown quite a bit and is doing all kinds of amazing new things. Things that must be shared! Stay tuned ....

Caden's birthday party

2009-07-02T14:55:00.002-04:00

He was just a little excited about his party. Just a little...

My baby becomes a boy

2009-06-26T09:59:00.003-04:00

In honor of my little rockstar turning 4 (FOUR!!!!) next week, I'd like to share the video I made for his first birthday. Even though he's a big boy now, he'll always be my baby.

Caden's first year

Happy Father's Day

2009-06-20T22:21:00.001-04:00

We are so lucky, Caden!

Tottoos

2009-06-19T09:43:00.002-04:00

Time for a little product endorsement. Caden is a runner. He makes a break for doors, elevators and the like so I was very worried about taking him to various attractions in Baltimore on a busy weekend. And combine that with some mild hearing loss that makes it difficult for him to hear mommy yelling "Stop!" and we have a perfect storm. It would be way too easy for him to slip through the crowd and escape. So I tattooed our phone numbers on him. Well, actually it was a temporary Tottoo. It stayed on for 2 days before it started to peel and gave me some security that if he was lost, someone could then call my cell phone and reunite us quickly. There are other versions out there and other forms of ID for children but I was very happy with this particular product. Okay, product endorsement over. They should at least give me a discount on my next order, don't you think?

More Baltimore

2009-06-17T09:50:00.003-04:00

Here you can see our little rockstar in action:

Baltimore Adventure

2009-06-15T13:46:00.005-04:00

It's no accident that Caden knows the sign for "explore." This kids loves an adventure. The Tank and I recently took him for a long weekend trip to Baltimore and he had sooooo much fun. He was running from animal to animal at the Maryland Zoo, had to be dragged crying from the Port Discovery Children's Museum and still didn't get enough of the National Aquarium after two visits. As soon as Caden was dressed each morning, he hopped in his stroller and signed "outside". He didn't even want breakfast. And it was such a treat to see him discovering new things and see the absolute joy, wonder and amazement expressed on his face. We all had a fantastic trip. Our biggest moment of drama was when Caden pitched a toy into the harbor. The Tank was proud of our son's throwing arm but Caden was beside himself watching his stuffed animal drift away in the water.

The weekend was such a joy that I can hardly wait till our next getaway.

What a joy of a weekend. I can't wait for our next family adventure.

Soeren spreading the word to end the word

2009-06-12T09:30:00.003-04:00

This young man is such a powerful presenter, inspired by his love for his sister. Soeren Palumbo is a student at Notre Dame and because of his incredible message has had the opportunity to travel the world reaching out to others. Such an inspiration.

Watch him here asking an audience to stop using the r-word and to choose love instead.

Vote for Brad!

2009-06-10T13:41:00.002-04:00

I've previously mentioned an amazing individual and self-advocate by the name of Brad Hennefer in this blog and he's back in the spotlight again. From a National Down Syndrome Congress email I received:

Self advocate Brad Hennefer, founder of the Golf for Life Foundation, (and a very popular speaker and exhibitor at our convention) has been chosen as one of 90 finalists in People Magazine and Major League Baseball's "All-Stars Among Us" national contest.

Vote For Brad!

The individuals nominated are people who have gone "above and beyond" in service to their communities. Each major league team is represented by three finalists.

To vote for Brad, go to www.peopleallstars.com and click on the Philadelphia Phillies logo. (We know--this can be difficult if you're not a Phillies fan. But it's for a great cause!) Then click on Brad's picture.

If Brad wins the Phillies vote, he'll win a trip to the MLB All-Star Game in St. Louis on July 14th, and will be recognized there. If he's the top vote getter among all teams, Brad will be featured in an upcoming issue of People Magazine!

You can vote for Brad until June 24th--and you can vote as many times as you want every day!

Dr. Awesome does Broadway

2009-06-08T14:14:00.002-04:00

Speaking of Dr. Awesome in my previous post reminded me of the Broadway show Rent.

I saw the traveling version of Rent on a Sunday when I was 19 weeks pregnant. Three days prior, we had had the eventful ultrasound that showed various markers for a genetic abnormality as well as hydrocephalus. Though the Tank and I had previously declined an amniocentesis, after speaking to Dr. Awesome about the ultrasound results we marched right back into the radiology department. I was scheduled to work that afternoon and knew I couldn't make it now that I had this unplanned procedure yet to complete. I called into my boss but a coworker answered the phone instead. I apologized for not giving more notice that I couldn't work and expressed concern that they might not find a replacement in time. Because this was supposed to be "the" ultrasound where the baby's sex would be revealed, I had excitedly told everyone about today's visit in advance. My coworker didn't need much more information to realize that something had gone wrong with my doctor's visit.

"Is the baby okay?" she quietly asked. I had managed to hold myself together throughout the conversation but suddenly burst into tears. "No!" I sobbed, "No! He's not okay!" Then I hung up on her and crumpled onto the Tank.

Because the results were likely to take a week or two, we were in a torturous limbo after the amnio. What were we dealing with? What would we do about it if something was wrong? I could feel my little guy kicking strongly and couldn't believe that there could possibly be something abnormal with him. I clung to the two pictures we had been given at the ultrasound. As we watched our baby moving around on the screen that day, he appeared to be punching the placenta. One of these images had captured that moment with his little fist raised high. I felt that he was telling me he was a fighter and I needed to be a fighter too.

I spent the weekend trying not to let my mind wander. We didn't have any definitive diagnosis so I knew my worries were wasted. I asked everyone to please go on with regular routines. My parents were supposed to drive up from Virginia to see Rent with me and the Tank. They considered canceling but I refused to let that happen. I needed to stay busy, I needed to be around family and besides, we already had tickets.

As we sat down in our velvet-covered balcony seats, I opened the program. There on the first page was Dr. Awesome. I couldn't believe what I was seeing and asked the Tank to check his program. Yep, Dr. Awesome was there too. At the time, our hospital had a marketing campaign highlighting its various departments. Each print ad featured a large picture of either a patient or staff member from that department. Apparently Dr. Awesome was representing Obstetrics-Gyncecology in this latest version of the promotion. I was speechless. What are the odds and what did it mean?

"He's telling us that everything will be okay", the Tank offered. I looked down at the smiling visage of Dr. Awesome and had to agree that yes, no matter what the amnio results revealed, the good doctor knew everything would be alright. It was beyond comforting and for the first time since the ultrasound, I put my worries aside to enjoy the show, occasionally sneaking a peek inside the program for reinforcement.

A few days later, I had a scheduled appointment with Dr. Awesome. The amnio results still weren't in yet but being of "advanced maternal age" I had more frequent prenatal check-ups. I brought the program with me and couldn't wait to share it. I told the story to Dr. Awesome about opening the program only to see his picture on the first page and how we had decided he was protectively watching over us. He laughed and said that some of his residents had also attended the performance but they had a different reaction. They opened the program and said "He is always watching us. We can't get away from him!"

I still can't hear a song from Rent without envisioning Caden's perfect little courageous fist raised in the womb. And I still have that program. Our interpretation of the hosptial ad was spot-on: everything was alright.

Balloon Chasers 5k

2009-06-02T15:30:00.002-04:00

We completed our second 5k race as a family at a Children's Miracle Network celebration. Of course Caden finished ahead of me and The Tank while enjoying his fully catered ride complete with snacks, drinks and toys. Between his 45 pounds and the weight of the loaded-up stroller, I have to think there aren't too many more of these in our future.

Compassion and independence

2009-05-29T14:23:00.004-04:00

One of the things I'm most excited about with Caden's growth as he prepares to turn 4 is his increased independence and desire to help others. More regularly he wants to dress or bath himself, prepare his food and clean up (which requires frequent trash can inspections to ensure he didn't clean up TOO well), even help me get ready. Sometimes he will bring a coat for me to wear outside, or stand by the door with my keys and sunglasses. He has even tried to help put on my shoes and socks. Yesterday after the Tank packed his lunch for work, Caden carried the lunch box over to the front door and placed it beside the Tank's keys and cell phone, ready to go.

He also is more willing to try something new after seeing another child do it. I can try and try to get a backward roll out of Caden but it's not until he sees another kid roll over that he points to himself to say "My turn! I want to do it!" He definitely wants to keep up with his peers and it is a huge motivation for him.

Sometimes he will stop to help strangers. He has a wonderful sense of compassion and seems to always be scanning people around us to make sure everyone is happy. Crossing the grocery store parking lot recently, I reminded Caden of the rule to hold hands. He spotted a woman in front of us with no hand to hold so he reached out and placed his hand in hers, much to her surprise. I quickly apologized but she was delighted, saying her children were grown and she missed holding a little hand. So the three of us entered the grocery store holding hands.

The Tank and I took Caden to an event at the Pennsylvania Renaissance Fairegrounds this past weekend. Many of the vendors were in character, dressed in period costumes and speaking in an Elizabethan accent. As we walked through the stalls, a woman selling pickles passed by us. The pickles were stored in 2 big barrels which she pulled along behind her on a wheeled wooden cart. It was a hot day and as we ascended an incline, the pickle lady started to slow. Ever-performing, she implored event goers to buy her pickles to lighten her load. Caden saw her struggling and without signaling his intentions to mom and dad, quickly grabbed part of the handle to her cart to assist her up the hill. I don't know how much he actually helped but it was adorable to watch. When we reached the top of the climb, he was obviously proud of himself and gave the woman a hug.

I love that Caden increasingly wants to do things on his own. It's easier on me but more importantly, I hope that desire continues as he grows into an adult. I don't want him to be comfortable depending on others if he is capable of performing tasks independently. And I admire both his ability to see when someone needs help as well as his quickness to jump in and do what he can. He reminds me to look around and see what I can do for others. It comes so easily and naturally to him and it's an inspiring character trait.

He's growing up. He's reaching out. My baby has become a boy.

Mama

2009-05-26T15:36:00.002-04:00

Caden said Mama! Caden said Mama! Caden said Mama! After waiting 3 years and 11 months, I finally heard him utter those sweet sweet angelic words. Oh, my heart has soared into the stratosphere. He signs "mother" and he knows who I am if you ask where is his mother but to hear him say it..... what a gift and worth waiting every second for it. CADEN SAID MAMA!

Questions that require no answers

2009-05-22T13:55:00.006-04:00

I stepped off the elevator and immediately spotted my escort standing across the lobby. I had been invited as a Family Faculty member to give a presentation to new hospital employees about our experiences with Caden at their facility. This would emphasize the Family-centered Care training they had been receiving all morning. I wasn't familiar with the location of this particular conference room so I had been assured that somebody would wait at the elevator to guide me to the location. Sure enough, there she was, right on time.

"Hi," I said as I approached her. Then the blur of a doctor walked hurriedly between us. It was my obstetrician. The doctor that had treated me during my high risk pregnancy based on advanced maternal age (the politically correct term for old woman), the very doctor that had delivered Caden's prenatal diagnosis, the man that stood beside me and my family as we decided to continue the pregnancy, the same man that due to his handling of all of the above I credit with saving my son's life. I hadn't seen him since hand-delivering a copy of the Gifts book to his office a couple of years ago. Yet there he was, rushing by with his white coat trailing behind him, ready to disappear through a set of automatic doors. I forgot all about the young lady waiting to lead me to my presentation.

"Dr. Awesome!" I called after him. Obviously this is not his real name but we'll go with it here. "You might not remember me...." I started but he was already smiling and extending his hand to me.

"Of course, Caden's mom. I still have his birth announcement on my desk and my autographed copy of the Gifts book. How is he doing? How's your husband and your mom?" I stammered some replies but I was struggling with my emotions. Here I was about to share our hospital stories which start with my pregnancy and Dr. Awesome and I happen to run into him. What are the odds? My pregnancy was such an emotionally overwhelming time, for me and my family, and this doctor saw us through it all. To see him unexpectedly now brought all those powerful and still raw feelings straight to the surface. It was as if he had just delivered the ultrasound findings all over again. I was prepared to share the memories with a roomful of strangers but NOT to relive them like this. I could feel the tears welling up.

Dr. Awesome asked what I was doing in this particular wing of the hospital which houses the College of Medicine. I explained the Family Faculty role in the new employee training and could see the unasked question in his face: would I be talking about my history with him? It was the same look he had given me when I handed him the Gifts book and told him the second chapter was the story of how we decided to continue the pregnancy. He finally had asked, "Well, having not read the story, how did I do?" I could barely stifle a guffaw. How did you do? Let's see, you steered the Tank and I through the darkest time we'd ever known and then handed us the best gift we've ever received. You kept us from making the biggest mistake of our lives which in effect saved Caden's life. And you're seriously asking how did you do????

The good doctor must have realized that I'd certainly be sharing this story with the new employees because he ended up not asking about it. Since he was probably off to save another life and I didn't want to be late for my talk, we kept the conversation quick. But the impact had been made and I was coming unwound. I apologized for blubbering to my escort and dabbed at my eyes as we traveled through the building. I was choked up during most of my presentation which made many in the audience tear up as well. I was an emotional wreck but hopefully it at least made my words more impressionable.

I cried again as I recalled the chance encounter with the Tank that evening. There isn't enough gratitude one could express for what this man did for my family. At each of Caden's birthday celebrations, somebody kicks off the weepiness by mentioning Dr. Awesome's name. He will forever be one of the most important people in my son's life and they haven't seen each other since the day was Caden born. I can't imagine having a job where doing something so amazing is part of the routine. I wonder if Dr. Awesome appreciates how very unroutine the experience was to us and what a significant difference he made.

I wonder too if Dr. Awesome looked at Caden's birth announcement upon his return to his desk that day. I especially wonder why he still has the announcement and what it means to him. If I actually asked him, do you think he'd nearly guffaw right back at me, "What does it mean? I had to deliver horrible news, breaking your heart and soul during your pregnancy. But after a leap of faith, I ended up delivering a beautiful boy with none of the predicted diagnoses except an extra chromosome. And you ask what does it mean?" I don't know why Dr. Awesome holds on to Caden's announcement but the fact that he does is answer enough.

Tumbling into inclusion

2009-05-18T15:22:00.005-04:00

"Were you in the tumbling class this morning?" she asked from across the street.

I was trying to get Caden hustled out of the house so we could hit the pharmacy before it closed. Caden charged down our walkway as I pulled the door shut behind me. I turned to see him stop at the sidewalk, waving to the woman pushing two children in a jogging stroller across the street. He is, after all, the self-appointed mayor of our town and never neglects his welcoming duties. Everyone deserves a smile and a wave. She waved back and I recognized her but wasn't sure from where. Fortunately she asked the question about the tumbling class so I could place her.

"Yes, we were. Are you new to the class?" I responded. I had never seen her or her daughter in Caden's gymnastics class before. As she crossed the street towards us, she explained that they usually attend gymnastics on another day but were having a make-up lesson (which I didn't even know was possible; nice to find out AFTER cold/flu season).

When she stepped up onto our sidewalk, we did a round of introductions and I noticed her Pro-Life t-shirt. She was very interested in Caden and I was betting she was finding the nerve to ask if we'd had a prenatal diagnosis. As she asked more questions about Down syndrome, I casually added that bit of information but I think it only served to stir up more curiosity in her mind as she suggested that we should get together over tea or coffee sometime to continue the conversation.

Then she commented, "I'm impressed that you have him in the gymnastics program." I know she meant it as a compliment but in my head I was wondering "Well, what am I supposed to do with him? Keep him locked up in the house all day?" Maybe she assumed that there was a similar class for kids with disabilities (not in our area anyway) or maybe she thought that gymnastics might be too dangerous for a child like mine. It didn't bother me enough to dwell on it with her but the statement did remind me that every time I engage in a community activity with Caden, we are also taking on the responsibility of advocacy and disability awareness. Every encounter with the public is also an opportunity to open eyes and hearts.

Certainly things were different for previous generations but for children today, inclusion is becoming more common. I actually went to meet the owner of the gymnastics academy before registering Caden to make sure it would be a good fit for everyone. Not only were they extremely positive and welcoming, but they mentioned how many other children with disabilities were students there. We were far from being trailblazers.

Today was the last day of class and every child received a trophy. Caden stood atop the thick mat serving as the medal stand and raised his trophy high over his head. Then he hugged his teachers before running to me, both of us beaming with pride. Why would we miss out on a moment like that? Of course I have him in the gymnastics program.

LSD

2009-05-14T16:26:00.002-04:00

My sister says Caden has LSD..... Lead Singer's Disease. Not sure why she would say that. Maybe because Caden is a rockstar and all the world is his stage!

Above photo's were taken in the kids's section of a science museum. Caden had no problem jamming solo on the stage. In fact, he didn't want The Tank and I to join him. Maybe he does have LSD.

Let's hear it for moms

2009-05-08T14:53:00.003-04:00

Happy Mother's Day to all the moms out there. I feel so lucky to be a mother but even luckier that I'm Caden's mother. It just doesn't get any better than that.

Best of Apple Blossom 2009

2009-05-07T16:40:00.004-04:00

We took Caden to Virginia to experience his fourth Apple Blossom Festival. Caden loved every single minute. And about that band playing at the end of this video, the lead singer is Caden's uncle and that was the first time Caden got to see him perform. We only stayed for 2 songs and it was at 6 pm so don't go thinking I took my boy out clubbing! Caden used his short time there wisely and studied his uncle's every move to incorporate into his own rockstar routines.

Heard a new one

2009-05-05T13:55:00.002-04:00

I always welcome questions from strangers who are genuinely interested in learning about Down syndrome or in what makes Caden different and the same as everyone else. I feel like part of being an advocate is this public education. I knew very little about Trisomy 21 before Caden came into my life so I appreciate anyone who has the courage to approach us. But I heard a new one this weekend.

I was watching a parade with my family and friends. Caden was seated beside me when a quiet polite woman approached and sat on the other side of my son. She smiled at him and I could see the questions forming in her eyes. Finally she looked up at me and said "Do you mind if I ask you a question?"

"Not at all. Go ahead," I invited, glad to put her curiosity to rest.

"Is he bipolar?" she asked. I couldn't believe I'd heard her right. The parade was loud so I asked her to repeat herself and again she wondered aloud if Caden was bipolar.

I wanted to laugh. I wanted her to laugh and show me she wasn't serious. Bipolar? I've had people confuse Down syndrome with other conditions before but bipolar disorder? This was out of left field. Admittedly I'm a psychology major so maybe I have more familiarity with mental illnesses. Still I was a little shocked that there could be so little awareness of a condition much more common than Down syndrome. I reminded myself to grasp this teachable moment.

"No, he has Down syndrome," I finally replied to which she answered "Oh, of course." From there we had the conversation I was actually expecting about DS and life with Caden. She really warmed up as our talk progressed, hugging my boy and kissing him on the head.

No matter how outrageous the question seemed, I am still grateful that this stranger was brave enough to ask it even though it exposed her lack of knowledge in the process. We are all better off for it.

Everybody throw your hands in the air

2009-05-01T09:04:00.002-04:00

Caden was the only kid in his gymnastics class excited about picture day. He was throwing his hands up and yelling "Yay!" My little ham.

Caden is DA MAN!

2009-04-29T14:43:00.002-04:00

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.

When Jamie Foxx is your brother...

2009-04-27T13:50:00.007-04:00

...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

More Positive Exposure

2009-04-23T13:15:00.003-04:00

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.

Positive Exposure

2009-04-21T15:28:00.002-04:00

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....

The Egg Hunt Champion

2009-04-17T15:24:00.003-04:00

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.

What's in a name

2009-04-15T14:22:00.005-04:00

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.

Being 1 out of 800

2009-04-13T10:17:00.004-04:00

"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.

Everybody's a comedian

2009-04-09T19:45:00.003-04:00

This is the message the dishwasher repairman left for us:

First friendships

2009-04-08T14:40:00.002-04:00

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.

Can't stop my feet...

2009-04-02T13:18:00.001-04:00

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

Use Respect Instead

2009-03-31T09:47:00.003-04:00

A family member recently used the r-word in the presence of my mother. My mother asked, "You know you shouldn't use that word, right?" and the family member, rather than apologize, said she thought it was ridiculous to have to watch her language like that. This relative has a daughter with diabetes and snidely asked "Oh, so now I should say my daughter has special needs because she has diabetes and people shouldn't talk about it?" Clearly not sympathetic, clearly missing the point, clearly refusing to show compassion and respect. Not to mention that it's completely off target since people don't use the word "diabetes" as a derogatory term.

This confuses me. How hard is it? Someone shares why something you said was offensive. Why not apologize and pledge not to speak like that again? It shouldn't be that difficult to think before you speak unless you simply don't care about anyone else's feelings. That's what I gathered from this family member. She's refusing to stop using the slur and is basically telling my mother that she doesn't care who it hurts. Nice.

Yes this is a free country and yes one can speak however they like because of it. But know that it reflects on the person speaking. I remember feeling pity and sadness for an elderly man that recently used the n-word. That whole social movement seemed to have skipped over this person and his refusal to change cast him as a bigot. In my mind, it is the same revelation when I hear the r-word being used. It speaks volumes about its user.

Today is the Special Olympics' campaign to End the Word. Make a pledge to yourself to stop using it in everyday conversation. The English language is expansive. Please think of other words to use. The group of citizens that this word references have to work so much harder at everything they do, including earning some respect. It really takes so little effort on our part to give it to them. Please spread the word to end the word.

Cheesy face

2009-03-26T13:54:00.008-04:00

Don't ever ask Caden to say "cheese" for a photo because this is the guaranteed result: his trademark Cheesy Face.

Caden celebrates Mommy's birthday

2009-03-23T13:49:00.004-04:00

Listen for Caden's exclamation of "Whoa!" when he sees my birthday cake at the beginning. I love his absolute joy at new exciting things. And he loved blowing out the candles. You'll see him sign "more" at the end so we actually did this ritual a few times to make him happy. And here I was secretly hoping this birthday would hurry up and go away but if it makes my boy happy, I'll endure.

The Weight of the World Down Syndrome Day

2009-03-20T13:12:00.006-04:00

March 21 is World Down Syndrome Day. The date is selected for its representation of the three copies (third month) of the 21st chromosome (the 21st day). This year it is even more significant as it marks the 50th anniversary of the discovery of the cause of Down syndrome, that extra copy of Chromosome 21. It is named after the doctor, John Langdon Down, that initially described the grouping of symptoms as a syndrome in 1866. But it was not until 1959 that Jerome Lejeune found the cause.

One of the reasons for having this annual awareness day is "to acknowledge our community of people with Down syndrome who have made such wonderful progress over the past decades," as quoted off the World Down Syndrome Day website. But this year it doesn't feel like progress.

During his appearance on Jay Leno's Tonight show, President Obama compared his pathetic attempt at bowling to the Special Olympics. In case you missed it, here's the actual clip:

It is unbelievably heart-breakingly disappointing to have such prejudice escape the mouth of our national leader. He followed his appearance with a quick press release that he meant no harm to Special Olympics. Riiiiiight. The ol "But I didn't mean anything by it" excuse for disrespect. It's precisely because it meant nothing to someone that makes a comment like that so disrespectful. After all his campaign promises to cater to the disabled by fully funding the IDEA and to pass the Community Choice Act, then this? He ran against a disabled veteran whose running mate has a disabled child. I guarantee that he had been briefed ad nauseum on how to speak about people with disabilities. And STILL this? Sigh.......we've come so far but it's clear we have so far yet to go. I can never get discouraged though. I have my son's beautiful smile to keep me moving forward. And I can only hope that part of Obama's effort to dig out of this hole will be an increased spotlight on the Special Olympics, people with disabilities and the impact of words.

And there are a few rays of light out there in the public eye. Politics aside, Sarah Palin is still raising awareness about Down syndrome. THIS is the way one should speak about Special Olympics:

You gotta love Trig in his new glasses and his sister who can't take her eyes off of him. And did you see his adorable smile? It's that smile and it's Caden's smile that reminds us we can do better.

The Age-Old Age Presumption

2009-03-16T09:53:00.022-04:00

The crispness of the question hung in the air like a slap of cold water.

I was finally at the doctor's office for a regular check-up. Since having Caden, I had had exactly 3 doctor visits: my 6 week post-natal OB exam followed quickly by another visit for mastitis and more recently a trip for strep throat. I figured it was probably a good idea to get back into more regular visits considering I was having the big Four-Oh birthday in a matter of days and my body would certainly start to disintegrate post-haste.

I was first examined by a medical resident. He posed an hour's worth of thorough questions with an eloquent lilting accent, took copious notes and eventually was joined by the attending physician, a tall woman likely a decade older than myself. Both scolded me for not going to the dentist, the optometrist, the OB-GYN, etc. on an annual basis. The doctor also asked if, based on my age, I wanted a referral to a fertility clinic. I wasn't necessarily trying to get pregnant but we weren't exactly NOT trying either. I had been taking my folic acid just in case but with Caden turning four this summer, I was also growing comfortable with the idea of our family of three being complete as is.

Before I could answer, the doctor went into the ominous medical spiel about having a child at my age: increased risk of birth defects, pregnancy complications, health dangers to myself, and "things like Down syndrome." Who did she think she was talking to?

"Oh, yeah, I'm very aware of all that. My son has Down syndrome." I informed her. And then she proffered this presumptuousness:

"But you had him when you were younger, right?"

I bristled. THAT question again. The general thinking used to be that babies with Down syndrome were born to older mothers (aged 35 and up in medical terms). Though odds do increase with age, most babies with Trisomy 21 are actually born to younger mothers because that group is the one having most of the babies. Then when one considers that older pregnant women routinely undergo prenatal tests that could detect such "birth defects" and statistics show that 90% of women with a prenatal diagnosis will then choose to abort, the general thinking has shifted. Now when a baby is born with an extra chromosome it is common to assume that the mother was younger, didn't get the more accurate prenatal testing that an older women would and was thus denied the opportunity to abort. This doctor seemed to take my child's mere existence as proof of that.

It can be draining to explain over and over that I chose to have my baby, a baby with a chromosomal abnormality. It takes some fortitude and patience but I tend to welcome these questions in the interest of education and awareness from most people. I'm sure I would have the same wonderings if Caden weren't my son. I truly appreciate when someone is trying to imagine being in my shoes and I forgive initial misconceptions.

However, I was less lenient with the physician. She had my file in her hands and could have found the information herself. She could have used a more neutral phrasing like "How old were you when you had your son?" But she didn't. I expected differently from a trained medical professional and felt disappointed, and hurt.

"No," I corrected her, "I was 36 when I delivered Caden." Oh, now she flipped through my records. I knew she was searching to see if the hospital had missed the Trisomy 21 diagnosis. I decided to spare her the trouble and added "I had a prenatal diagnosis."

"Oh, okay," she stumbled while avoiding eye contact, "So you know what can happen."

The hackles were out. I didn't like the insinuation hanging around "what can happen". How could I possibly explain to this multiple-degreed yet not fully educated woman what I knew about "what can happen"? Would she comprehend that Caden was the best thing that ever happened to me, my rising sun, the pride of my life and its greatest blessing, my legacy, my love, my child? Could she understand that "what can happen" is the greatest love and deepest happiness I've ever known? And would she believe that knowing what I know now after having Caden, I would make the same decision again? And again?

The fumbling doctor still wasn't looking at me. I glanced at the resident and caught him watching with eager eyes. Maybe the doctor had an inflexible mindset but this young man seemed open to possibilities. He was the future of medical care and he was paying attention.

"Yes, I know," I stressed with a furrowed non-approving brow hoping she'd look up.

"We can give you that referral to the fertility clinic if you still want it then," she emptily offered. I know she expected me to decline as if having Caden should scare me away. Now I'm not about to go out and get pregnant just to prove a point to a doctor that will probably never appreciate the value of a child like mine. But the truth was that it would be beneficial to the Tank and I to find out whether another child is still a possibility. Having some diagnostic tests completed would be a good kick in the tush. Then we could move onward with whatever the findings may be instead of hanging in conception limbo. The doctor in one last attempt at dissuasion added that my insurance company probably wouldn't pay for anything more than the first consultation.

"Okay," I answered, "Might as well have one visit and see what they find."

"That's right," agreed the resident and I couldn't help but feel his genuine support in these first encouraging words of my visit. The doctor excused herself to go fill out the paperwork. The resident over-optimistically claimed that they'd be right back (doctors are never "right back") and followed her out of the room. He turned back towards me as he pulled the door behind himself. He was smiling. I whispered thank you and smiled back.

That's the way the cookie crumbles

2009-03-13T14:22:00.003-04:00

My cookie non-monster is starting to see what Mommy sees in cookies - yumminess. In this previous post, I mentioned that Caden has no interest in cookies. He also doesn't like candy, chocolate, ice cream, cake or pie. Maybe the sweet tooth skips a generation because I never met a dessert I didn't like. Caden has made some progress in the cookie department recently. He will eat sugar and oatmeal cookies now, but only if they are without frosting or other decor and very soft. Crunchy cookies are out. Except for Oreo's. Or more specifically the filling in the Oreo's which is my favorite part too. Not that I've demonstrated this technique to him but he likes to pull the two wafers apart, lick the filling and then hand me the gooey semi-dissolved wafer halves. He is so my son.

Z-O-O

2009-03-11T13:39:00.002-04:00

This weekend the area zoo had a birthday celebration for their mascot. We are members of the zoo so we are also frequent visitors. I usually ask Caden if he wants to go to the zoo by fingerspelling "z-o-o" followed by the sign for "animals". I assume it will be awhile before he can fingerspell but I like to first demonstrate the proper sign anyway. He had a grand time at this birthday celebration with the games, crafts and animal displays they had created for the occasion. Though he was so exhausted he could barely walk, he insisted he didn't want to leave every time we asked if he was ready.

The following day we were out running errands and found ourselves on the road leading to the zoo. At the last stop light before it becomes visible, Caden began to sign something from his car seat. His fine motor skills being what they are, I do admit that sometimes I have trouble deciphering his signs without a context. I asked him to try again. He repeated the same movement and I was still clueless. I hate when I don't get it. I feel like I'm failing him and I could see the frustration in his face as he tried his sign over and over. Finally he resorted to signing "animals" and then the light bulb went off in my head. He had been fingerspelling "zoo". I screamed so excitedly that The Tank nearly pulled off the road shouting "What? What's wrong?"

"Caden spelled zoo!" I was elated and shocked. "You want to go the zoo and see the animals?" I asked.

"Yeah!" he said with the same inflection that one would use to say "Duh!" I half expected him to roll his eyes at me. Unfortunately the zoo was closed and I explained this to my little genius but he didn't seem to mind. We were too busy doing the Caden-spelled-zoo dance.

John C. McGinley rocks again

2009-03-09T10:35:00.004-04:00

Man, this guy is an awesome spokesperson and I'm so glad he's on "our team". I'm thankful that he's willing to advocate for his son on such a public level. Remember to Spread the Word to End the R-Word on Tuesday, March 31.

Yay - a blog award!

2009-03-06T12:52:00.008-05:00

Michelle from Our Roads Traveled honored me with the Premios Dardos blog award. This award acknowledges the values that every blogger shows in his or her effort to transmit cultural, ethical, literary, and personal values every day. Thanks Michelle!

Here are the rules:
Step 1: respond and rework -- answer the questions on your own blog, replace one question that you dislike with a question of your own invention, add one more question of your own.
Step 2: tag - eight other bloggers to do the same.

1) What are you wearing right now? Fortunately I am wearing clothes though unfortunately nothing worth mentioning as my wardrobe is in a pitiful state of style.
2) What is your biggest fear? Dying while Caden is still young
3) Do you nap a lot? The will is there but not the time
4) Who is the last person you hugged? Caden before he went down for his nap
5) What websites to you visit when you go online? I check for news, read other blogs, and then there's that time-swallowing monster Facebook
6) What was the last item you bought? Bananas, Caden's new favorite food
7) If you could go anywhere in the world, where would you go? With Caden, a quiet gentle beach; with The Tank, New Zealand to relive our honeymoon adventure
8) If you could go to the Oscars, who would you want to sit next to? The best male actors group...wassup, Brad!
9) Has a celebrity's hair cut ever influenced your own hairstyle? My head is in my mother's hands
10) What is your most frightening moment? Getting Caden's prenatal diagnoses
11) What was the last movie you watched? Capote. I rent from the library so I'm really far behind in movies
12) What is the luckiest thing that ever happened to you? After the conception of my beautiful boy, I would say winning thousands of dollars when I was in the final four of the Shenandoah University car party
13) If you had a whole day to yourself with no work, commitments or interruptions what would you do? Go hiking
14) Is there a major goal you have that you haven't yet achieved? Visiting Antarctica. I've been to the 6 other continents already.
15) What is the first job you had? I cleaned a gift store called More Fun every Sunday when I was 14.
16) What is something that those in blog land might not know about you? I've gone streaking down an airport runway. Is that like a federal crime or something?
17) What is something simple that relaxes you and you enjoying doing? Yoga as long as my 42 pound toddler is not trying to tackle me in the middle of the moves
18) What is the last book you read? My Up & Down & All Around Book with Caden. Grown-up type books may have to wait till he enters school full-time.

Now to pass on the awarding of the award, I give shout-outs to:
1. Kristi at The Winchester Mantoni's
2. Jennifer at Five in my Family
3. Loren at Malakai Stow
4. Gayla at Where's My Angels
5. Renee from Life With My Special K's
6. Rebecca at E is for Everything

Yikes, I know it says to do 8 but my rock star is awake now and demands my full attention so 6 will have to do.

Putting it plain and simple

2009-03-03T12:25:00.009-05:00

My son is not....

a burden.
a mistake.
a wasted life.
a tragedy.
contagious.
disgusting.
retarded.
defective.
unwanted.
a sacrifice.
an angel.
a punishment.
drooling in a corner.
better off dead.
his diagnosis.

I am not....

a saint.
better suited to raise a child with special needs than anyone else.
carrying a cross.
throwing away dreams.
doing more than any other parent would do for their child.
the best mother I know.
cursed.
pitiable.
ashamed.
living with regret.
missing out on life.
better off without my son.
teaching my child more than he teaches me.

My son is...

purest joy.
unconditional love.
making me a better person.
amazing in every way.
his daddy's pride.
enhancing my marriage.
living every moment of every day fully.
the happiest person I know.
as worthy of life as any and every one.
a beautiful boy.
smart and funny.
just as he should be.
an inspiration.
deserving of all I can give him and more.
the best gift I have ever received.
a blessing.

Wait a minute, Mr. Postman

2009-03-02T13:52:00.002-05:00

Caden mailed his first package at the post office with much enthusiasm. One of his cousins lives over 5 hours away so we mailed her birthday present to her. He helped me wrap it and then refused to put the package down. He carried it to the car, in the car, and then into the post office.
He loves helping me out and doing things on his own so this was mega-fun in his book. He did a little dance with the present while we waited our turn in line.

He was so proud of himself as he placed the package on the counter. Too bad the postal worker wasn't as excited about it as we were. Spoilsport.

Fortunately the other customers in the lobby with us were full of smiles and high-fives for Caden. He was so disappointed to head back out to the car and kept signing "more". Guess I'll have to find more things for him to mail.

Stalking on Valentine's Day

2009-02-26T12:55:00.004-05:00

The Tank took me to a romantic Sunday brunch for Valentine's Day (hey, you gotta take what you can get when you need a babysitter). We traveled 45 minutes to an old Amish farmhouse that had been converted into a magnificent inn known for its weekend brunch menu. It was the first visit for both of us and I was excited to be on a date with my husband. No sooner were we seated at our cozy table by the window smelling drool-inducing homebaked muffins then The Tank told me to look over my left shoulder. I tried to be discreet and sneak a peek in the direction of his gaze. Lo and behold, there was a couple with their 20-something son dining together, talking about their recently-consumed food and obviously enjoying their time together. The son had Down syndrome.

I don't know why I become a stalker in these situations. Honestly with Caden being 3 1/2 you'd think I'd have grown out of this by now. But suddenly I couldn't focus on the menu or even on The Tank. I was obsessed with eavesdropping on this party's conversation and trying to spy on the young man's every move. I pictured that table as our little family in 20 years and that young man as my grown-up son.

We had just placed our orders with the waitress when the table of my obsession stood to leave. The mother left first while the father finished signing the credit card slip. The son turned to a somewhat surprised neighboring table and introduced himself. I hoped he'd approach us next but then the father had finished the bill and they both left the room. I was overcome with a desire to bolt to the window and watch them get in their car and drive away. I don't understand why and I don't know what I expected to see. But I managed to stay seated and eventually concentrate on our romantic morning get-away.

After our meal, I truly desired a yummy-sweet dessert. It was Valentine's Day after all but I had not planned properly. There was no room left in my stomach. I suggested to The Tank that we head home and maybe after that 45 minute drive had passed, we would be ready for dessert.

And so we were. We went to the best dessert-serving restaurant in town. I hadn't even removed my coat before I spotted the occupants of the booth two spots behind us: a couple with their 20-something daughter with Down syndrome. What is going on here? What are the odds? This time I was the one telling my husband to look over his shoulder.

They were preparing to leave. The father had given his daughter a beautiful bouquet and she carefully repackaged it to carry outside. As they left the building, she lovingly looped her arm through his. He patted her hand in acknowledgement and they both beamed happiness. And oh no, now I was crying. I felt guilty that we had left Caden with a sitter when these parents were so clearly relishing the time with their adult children.

We ordered our desserts and coffee while again I felt that we had been witnessing our future selves on Valentine's Day 2029. I couldn't wait to get home and hug my boy.There was no music playing in the restaurant but I could not shake a Bob Marley tune from my head: Don't worry about a thing, cause every little thing gonna be alright..

Goodbye, Corky

2009-02-20T13:15:00.003-05:00

Caden lost his last remaining great-grandparent today, his great-grandfather and my paternal grandfather, known to all as Corky. He was a hard-working farmer and livestock trader who lived to be 94 years old. Caden loved playing in the stream at Corky's farm and riding his auntie's horses that were stabled there. I'm so glad they knew each other, if only for a few years. We love and miss you, Corky.

Adieu long hair!

2009-02-18T10:57:00.009-05:00

First some background info: kids with Down syndrome have up to a 20 times greater chance of childhood leukemia than typical children. However they are also more likely to respond successfully to treatment than typical children. I know several online acquaintances and a couple real-life friends whose children have endured this additional diagnosis. I read their blog posts and see the photo's they post on various discussion boards. Through chemo and radiation and even after the loss of their hair, still these children smile. It is truly touching. So when I heard a local salon was holding a Cut-a-thon for Locks of Love, a non-profit organization that provides hairpieces to children suffering from medical hair loss, I signed up. Why not, I thought? My hair will grow back and what a great way to contribute to a fantastic cause.

Here are the before and after pictures of my hair from behind:

This was a really big deal for me. My mother is a hairdresser so no one else has ever cut my hair before and this was no mere trim. Here is the actual cutting off of the long ponytail donation as I ponder for a brief moment sprinting to the parking lot:

And here are the after photo's. It'll take some getting used to and I can say that the last 2 days I have not been able to get it to look like it did when I left the salon as I own NO hair product. A crazy realization considering my mother's occupation. But with long hair, I'd let it air dry and pull it up most days, no maintenance involved. Yesterday I woke up with my hair sticking out in every direction so those days are over. I can't shake the feeling that there is a bug on the back of my neck when the new short ends hit it. And I keep brushing my shoulder blades where my ghost hair feels like it should be. Then there's Caden's reaction as he keeps looking over my shoulder for the rest of my hair. But I'm sure we'll adjust soon. I just keep thinking about a child somewhere with no hair waiting on my wig and have no regrets whatsoever. And so, long hair that I've had for a decade, I bid you farewell and hope you bring much happiness to your new owner.

Up the Down staircase

2009-02-10T13:52:00.003-05:00

I've noticed that Caden's development tends to come in big waves with long periods of rest in between. Just when I think he's plateaued, he surprises me with several big achievements at once. And he accomplishes them strongly with no doubt they've been mastered.

At Caden's one month checkup, the pediatrician seemed fine with the fact that Caden was already delayed in some of the very early developmental milestones. I knew I should be patient and accept Caden wherever he is but I also wanted some help. At the time we had not been referred to Early Intervention or any type of therapy. I felt like I was failing my son already.

"He's not smiling yet," I informed the doctor "Well, he kinda smiles when he has gas but that's it."

The doctor looked up from his examination of my baby to ask "And that's not good enough for you?" I could have died right there. I wanted to burst into tears and shrink away. I already felt like a bad mother and didn't need any more help in the inadequacy department, especially from a medical professional.

That night I did cry as I filled in The Tank about the visit. He had also been concerned about Caden not smiling yet and we both felt the doctor's comment as a punch in the gut. I thought we had been pushing for our son to reach higher goals but the pediatrician had made us feel like complainers and parents who would never be pleased instead. I remember standing in the kitchen holding my beautiful baby as we re-evaluated our expectations, tears streaming off my face.

And then Caden smiled. I couldn't believe what I had just seen and told The Tank to get beside me pronto. Sure enough our son smiled again. And again. And again. Suddenly my baby was all smiles. I couldn't get enough of it and we laughed till bedtime.

Caden's first time sitting up, standing, crawling, even walking all happened in a similar manner. We worked on it, waited for it, no results. Almost always he would perform said milestone within a day of me mentioning its absence to a doctor or therapist. It was as if he was waiting for me to make the comment so he could prove me wrong. And when he did conquer a feat, he did it like it he'd been doing it for months. He didn't take one or two steps when he first walked. He zoomed across the room.

One of Caden's current goals is to master steps. He can go up and down with assistance though without alternating legs. He prefers one leg to be in the lead. We have a small stoop under our front door and I have seen him go up and down that single step without assistance, meaning nothing to hold onto, only a handful of times. Bigger steps he looks for a handrail or resorts to crawling up. Forget going down unless he's got a firm grip on both sides. The Tank had recently asked me if I thought the physical therapist was making this enough of a priority in their sessions. Caden had been climbing steps with assistance for nearly 9 months now and it seemed he should be able to do it on his own by now.

Yesterday after I picked Caden up from school, we took the 2 flights of stairs down to the ground floor. He was holding the handrail in one hand, my hand in the other. He steps down each time with the left leg first. The usual MO. His classmates seem to speed past us as they rush out of the building. But I've learned patience and know Caden is doing the best he can. We'll get there when we get there.

Once we hit the parking lot, we make a right turn to go up a small flight of 5 stairs to a secondary lot. The main parking area had been full so I had to park along the side of the building. Caden spots our car up the small slope and takes off, letting go of my hand. Before I know it, he has climbed up all 5 stairs. No handrail, no assistance, no problem. I am jumping up and down with glee and don't care who sees me. I give my amazing son a high five and then much to his irritation, scoop him up for a big kiss. "I am so proud of you, Caden!" He looks up and signs "more". He wants more steps. He knows he's got it down now and wants to show off his new skill. And true to form, he ascends the stairs like he's been doing it since he could walk. Wait till The Tank sees this. I love when Caden makes us eat our words!

What Caden did at school today

2009-02-06T14:49:00.004-05:00

It is hard for me as a mother to not know exactly what happens during Caden's school mornings. He tries to talk but his words are very mumbled so he relies mostly on sign language. When I pick him up, I always ask him what he did at school today but he has never been able to sign about past events, or future ones. His signing is usually descriptive about what is currently happening , or what he wants right now. I've tried to ask him "Did you paint today? Did you have fun today? Did you play with Katie today?" but he answers everything with an enthusiastic "Yeah!" I could be asking "Did you build a rocket ship today? Did you snack on caviar and Brie? Did you shoot lasers out your fingers?" and still I would get "Yeah!"

His typical preschool posts the daily events on a dry erase board but I always wonder how much Caden participated. Did he really eat marshmallows? The special education preschool sends home a check list on what activities he performed and which classmates he played with but there are no descriptives. When it says they built a class snowman, I'm certain they weren't outside in the snow. What does "class snowman" mean? I've usually calmed my trepidation with the knowledge that whatever Caden does at his schools, he loves it. He is very excited to go to either facility. That must do.

When I picked him up this morning and as I zipped up his coat, I did the standard "What did you do at school today? Did you have fun?" To my surprise, Caden signed "sleep" and pointed to one of his fellow classmates.

"Oh, was she sleeping?" I ask. Caden points to himself and again signs "sleep".

"So you were both sleeping?" I question.

"Yeah!" he exclaims. They don't do nap time at this school. Maybe it was part of a story or special activity. Maybe he's just being silly. I turn to the classmate.

"Were you sleeping?" She smiles and nods her head. Then we are approached by the little girl that gave Caden a piece of her artwork last week. She wants to hug him goodbye. Caden does the same pointing to her and himself while signing "sleep." This second girl also confirms that they were sleeping. Now I must know what happened. Caden has never spontaneously told me about his school day. Is he actually telling me about something they did or merely making up a story? I re-enter the classroom and approach the teacher.

"Were they pretending to sleep today?" I ask her. She looks a little puzzled at first and then recalls that Caden was under the table with 3 of his female classmates. She thought they were pretending to camp but they must have been pretending to sleep. "What a smart boy!" she says and gives him a big hug. I feel nothing short of blown away.

Later when I recount the story, The Tank is proud of his son's Casanova stylings in being under the table with 3 girls. But I am less impressed with what Caden did at school today compared to what he learned.

Today Show tissue-grabber

2009-02-05T15:23:00.003-05:00

http://today.msnbc.msn.com/id/26184891/vp/29030653#29030653

Watch the video called "Player with Down Syndrome wows fans". Man, I would give anything for Caden to have an experience and friends like this in high school.

Caden's first snowman

2009-02-02T13:18:00.000-05:00

Lucky

2009-01-30T14:22:00.004-05:00

"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."

How's this for irony?

2009-01-29T16:16:00.002-05:00

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.

What to say to a pregnant woman

2009-01-27T13:21:00.005-05:00

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.

Followup to 25 Random Things

2009-01-26T10:07:00.003-05:00

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.

25 Random Things

2009-01-23T12:40:00.002-05:00

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.

The Art of Friendship and Acceptance

2009-01-21T13:29:00.003-05:00

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.

Farmer Caden

2009-01-15T09:17:00.003-05:00

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!

The Special Needs Trust Blues

2009-01-09T13:30:00.003-05:00

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!

Lessons of Africa

2009-01-07T13:42:00.008-05:00

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.

When math is good

2009-01-05T13:21:00.000-05:00

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!

When Mommy takes a shower...

2008-12-30T12:56:00.003-05:00

... the toddler has power. I should have known something was up when he got super quiet but I thought he was watching his new Nemo movie. Unfortunately the call of unwrapped presents under the Christmas tree was too much for Caden to resist. Tissue paper stuck in the door is never a good sign:

Guilty! Trying to hide behind your table won't help!

For the love of Santa

2008-12-22T22:31:00.006-05:00

Caden has really fallen in love with Santa this year. He has no idea that you're supposed to tell Santa what you want for Christmas and then he leaves tons of presents for you under the Christmas tree. He loves Santa because he's a nice cuddly warm guy in an easily recognizable fuzzy red suit. Like Elmo.

Our local fire department drove Santa through town on top of one of their fire trucks. Seemed like a great idea except that they kept blaring the horns and sirens of the trucks and turned Santa's arrival into a somewhat terrifying moment for younger children. You'll see Caden clinging to his mother with all his might in this video and then hear him excitedly chanting "DADADADADADA" as in San-DA when he realizes who's on top of the last truck.

After we retreated indoors, Caden kept bringing his coat to us as if he wanted a do-over. He was knocking on the front door and even brought my coat to me. He wanted to go back out and find Santa Claus despite the accompanying fright fest of noise.

Caden's gymnastics class held a holiday party. It was basically an open gym session for the kids to run around and play. At one point they were asked to sit together for some caroling. Suddenly Santa appeared. Caden jumped up and did a little jig, spun in circles, cupped his face, shouted "DADADADADA". He could not contain his pure joy and it made everyone around us smile and laugh. Every time he sees Saint Nick is as exciting as the first time.

Now we have to work on when he sits on Santa's lap, Caden should do more than melt. He looks like he's settling in for a nap and completely collapses on the man. It is difficult to take pictures when your son's neck looks broken as it rests on that soft red suit. Santa usually asks Caden several times what he wants for Christmas and it always ends the same: he wants a hug. I think Caden understands the spirit of the season just fine.

Geraldo update

2008-12-19T14:10:00.002-05:00

As a followup to my previous post about Geraldo's upcoming investigation into the dire Waiting List situation for individuals with disabilities, I have an update on when the segment is to be aired. There is now a change of date. It has been moved up to Saturday, December 27 on 10 pm on the Geraldo at Large FOX News show. This is great timing to catch people in the "holiday spirit" which may open their eyes and hearts to this big segment of the American population living in desperate circumstances. There is also hope that local Fox affiliates may jump on the bandwagon and do their own local reporting on the Waiting List. Tune in next Saturday!

In the spirit of the season

2008-12-18T21:27:00.002-05:00

Caden thumbs his nose at silly

2008-12-17T14:30:00.005-05:00

I saw it coming. SMACK! And down went Caden like a fallen tree. Let the tears begin.

We had been invited to a friend's house for dinner. They were hosting some out-of-state guests with children and thought Caden would like to play with the kids. Which he did. He followed them around from room to room with me right in tow. My friend told me to relax as the kids would be fine and there was nothing they could break in the house. I gave Caden some space and tried to unwind enough to socialize with the adults. One of the guests was an overly-animated New Yorker who talked with all of her body, hands moving continuously. As a child that relies on a lot of sign language, Caden was confused by her movements. She had a sudden booming laugh that scared him and brightly-striped pants that made your eyes water if you stared at them for too long. For all her vivaciousness, Caden seemed to be happy to be in another room away from her.

I saw the kids tear out of a bedroom chasing each other down the hall, Caden bringing up the rear. When I heard the playful screaming I realized that they had reached the end of the hall and were turning around to chase each other back. Caden was still plowing full steam ahead just as the other kids turned and SMACK! One of the older girls leveled my boy flat onto his back. He was scared more than anything but wailing his lungs out for good measure nonetheless. I scooped him up and tried to calm him down when the mother of the girl approached to see that Caden was okay. It was the stripey-pants lady, hands gesturing wildly as she dramatically apologizes. As sweet as she is, I expect that she may end up making things worse.

Caden looks up with his puffy red face soaked with still-streaming tears and takes a solid head-to-toe look at her. I wonder if he might start screaming anew when he raises his thumb to his nose. He begins to then wiggle his hand, pinky outstretched. Stripey-pants lady realizes he is making a sign.

"What did he sign?" she asks me.

"He said..." I consider lying, not sure how this stranger will react with everyone gathered around us listening. Maybe I could say he signed thank you, or pretty. I opt to translate honestly instead. "He said you're silly" I reply while choking down a giggle.

"He said I'm silly?" She seems surprised by his opinion of her and straightens up. He has stopped her in her tracks. Then she surprises me by kneeling down to his eye-level and gently smiling. In a near whisper she says "Yes I am silly!" Through his tears, Caden smiles and I know the drama is over. She hugs him and seems to rejoice in her new label while Caden returns to playing with the other kids. All is right with the world again.

Happy feet

2008-12-15T14:35:00.002-05:00

One of my more embarrassing moments

2008-12-11T14:40:00.000-05:00

Two days ago I gave a presentation at our local hospital. Doesn't sound so embarrassing. First some background so you can appreciate the mortification I am about to share.

I have been helping this hospital for the last couple of years with their Family-Centered Care Training. The organizers of the training feel that they can speak to their coworkers all day about what family-centered care means and how it should be done but the biggest impact comes from having actual patients come in and speak from personal experience. At first the training was part of the new employee orientation but this year they wanted ALL employees included. They offer the program one or two times a month but of course everyone waited until the last date of the year to attend one of these required presentations. They were expecting around 200 people. In previous trainings, they've had about 40 attendees. Three cheers for procrastination.

I frequently am asked to give the patient portion of the presentation because I can speak for myself during my prenatal experiences as well as for Caden as a pediatric patient. More bang for the buck, I suppose. However it was becoming more difficult for me to attend due to Caden's busy schedule. They've also had other presenters not show up due to weather or illness so last year they videotaped one of my presentations to have as a back-up. They've shown it close to 20 times since but thought that because this upcoming group was to be so large, it would be nice to have me in person.

The group is in fact so large that we are moved from the usual lecture room in the medical college to an auditorium at a conference center. The organizers agree to meet me at the door since I don't know my way around this building. As I approach, one of them says "And there you are in your outfit. That's the exact same outfit you wore in the video presentation we've been showing. Right down to the necklace!" Uuuuhhhhhh.... what do you say to that? Is that whooshing the sound of air being sucked from my body? I consider wearing my winter coat during my entire talk.

It's true that the only clothes I've purchased since having Caden have been from Sam's Club while picking up diapers and wipes or the consignment shop when dropping off some clothes he's outgrown. In fact, Caden has a more fashionable wardrobe than his mother. Being a stay-at-home mom, I pretty much live in sweats and jeans. I have 2 nice "adult" outfits for these presentations that aren't 100% outdated. Though the boots that I wore with this particular ensemble I've had since high school. I've had them so long that they're back in style. Yikes! I think it's time to face the ugly truth that I need to do a complete wardrobe overhaul. Or else they'll really start to wonder about me if I show up in this outfit yet again.

Yeah, it's like that

2008-12-08T15:15:00.004-05:00

"What is Down syndrome, really? Is it like a learning disability?"

Talk about your loaded question. This is the one placed before me at a local holiday train display. The volunteer running the model trains was a 71-year-old man with a great-grandson also named Caden. He approached me about my Caden, asking how old he was and commenting on his size. I respond that Caden is big for a typical boy his age, much less one with Down syndrome. Children with DS are usually smaller than their peers and even have their own growth chart to reflect that. But at this rate, Caden will grow to be taller than me or The Tank. Because I've mentioned DS, I know I have opened the door for related questions from this stranger. Sometimes I feel like a person wants to ask about it but doesn't know how so this is my way to say it's okay. Indeed the volunteer does accept my unspoken offer but comes at me with a question I've never been asked before: is Down syndrome like a learning disability?

"Well, it's caused by an extra chromosome..." I start but he is nodding his head in a way that says "yada yada yada, I know all that".

"It's a random occurrence..." I continue as his head continues to nod.

"Being a syndrome, there is a wide range in the way it is expressed in an individual..." Still the head-nod. In his mind, he is probably fast-forwarding me.

"But in nearly all cases there are the characteristic facial features and some degree of mental retardation." Finally he smiles as I approach some meatiness.

"Anymore with the amount of therapies and stimulation, Early Intervention, better schooling and medical care, the MR is generally mild to moderate. Caden is very bright. He knows all his letters, colors, and shapes. I stopped counting his signing vocabulary when he hit 200 words. He can read over 40 words and is starting to learn numbers. He will learn to read and write and do math. He CAN learn, he just learns at a slower pace or sometimes in a different way." As I hear my own answer, I realize I have talked his question to death. I could have answered it much simply so I backtrack.

"Yes," I finally declare, "I guess it is like a learning disability."

The more I've thought about that conversation, the more I like that way of thinking. Mental retardation sounds scary, clinical and something with which most people may not have experience. But a learning disability...well, heck even Tom Cruise has a learning disability. That makes it more approachable and familiar, different but okay. It doesn't sound like such a big deal to say that his extra chromosome has given Caden beautiful almond eyes and a learning disability. Over simplistic, yes, but still I like this great-grandfather's perception.

Why is Play-Doh yummier than cookies?

2008-12-04T10:20:00.003-05:00

Caught in the act of eating Play-Doh

Realizing he's been caught redhanded

What gave it away? Would it be the purple slime quickly turning to concrete on my face?

Caden releases his inner rebel

2008-12-01T14:08:00.002-05:00

We have entered the phase of "question all authority". I used to be able to tell Caden "No, don't do that" and he would stop whatever he was doing. Simple. Now he looks for alternative methods to accomplish his mischief. For instance, last week we visited our local pharmacy. They had an enormous Christmas tree fully decked out in their lobby area. Caden's hand went straight for the closest ornament. "No, Caden, no touching" I warned and watched my angel's hand go down as he respectfully obeyed his mother. I put my arm around him to enjoy this peaceful quiet moment taking in all the lights and decorations when suddenly Caden's foot shot out and kicked the tree. Who does that? Who kicks a Christmas tree? I did NOT just see that! And to top it off, the little stinker laughed because he knew I had only said not to touch the tree. I never said anything about kicking the tree.

We recently rearranged our living room so that our cockatiel is further from the cold of the front door. She's now in a corner that is too accessible to Caden. He never paid much attention to the bird before but in her new location, she has become fascinating. He runs toys up and down the bars of the cage, tries to push toys into it, hits it, throws balls at it and of course, kicks the cage. My guidelines about the bird grow each day: no hitting, no kicking, no throwing, no toys, no food, no pushing your stool over for a closer look, no dragging the table it rests on.... My poor bird has suffered through my college days, 2 cats and moves across 4 states but I don't know if she'll survive a toddler. Yesterday Caden invented a new form of civil disobedience with the bird: screaming. He stands within an inch of the bars and screams at our poor freaked out feathered pet at the top of his lungs. I have been defeated by a three year old. Again.

I'm proud of his inventiveness. I'm proud of his independent streak. I'm proud of his persistence. And I am utterly exhausted trying to stay one step ahead of this smart little boy.

Giving thanks

2008-11-26T14:58:00.003-05:00

...to everyone who loves and supports our little rock star. He has blessed us in so many ways, including this circle of amazing people that care about him. Thank YOU!

The Cookie non-Monster

2008-11-25T08:24:00.002-05:00

This is the only 3 year old in the world that doesn't love cookies. I thought maybe if we made and decorated our own, he might be more motivated to try one. He loved decorating them, he loved feeding them to mommy but not one morsel went in his mouth. Crayons, PlayDoh, pine cones - yes. Cookies - no.

Geraldo takes on the Waiting List

2008-11-21T14:03:00.003-05:00

I recently read that today's children with Down syndrome will be the first generation to outlive their parents. It's wonderful that medical advancements have allowed them a longer and more enjoyable life. At the same time, it creates a new set of problems for parents who now need to plan for their child's future after the parents have passed away. It is one of those embers that always seems to burn somewhere in my brain...what will happen to Caden when I am gone? Hopefully I will have raised him to be self-sufficient and as independent as possible. But what if he needs some assistance? In most states, almost as soon as the child leaves high school and transitions into adult services, they will be added to the ever-growing list of people with disabilities who are in need. And they will wait for those services. Sometimes the family members can pick up the slack and offer housing and such until the state funds become available but many others are in extremely urgent situations. And still they wait. In Pennsylvania, that waiting list is over 20,000 people long. It terrifies me, that Waiting List. I don't ever want Caden to be on it but there just isn't enough money to go around. If he needs services from the Mental Retardation program, he will most certainly become a number on the list.

So I was pleased to read this from Peter Bern, the Executive Director of the ARC:

"Visibly moved by comments from self-advocates, family members and
chapter leaders at the Opening Plenary Session of The Arc's 2008
National Convention, renowned television journalist, Geraldo Rivera,
electrified the audience, pledging that on January 6, 2009 - the anniversary
of his expose about Willowbrook - he will present a one-hour news
special to shine light on the current crisis facing people with disabilities and their families - the Waiting List.
This news expose will only be possible if chapters of The Arc, self-advocates and family members come forward IMMEDIATELY with VIDEO and STORIES
that dramatically illustrate the challenge people with intellectual disabilities face today in accessing the service they need to live freely in the community.
The Arc of the United States will be working with Geraldo and his staff to gather the
background information, stories, video and other media to make this show a
success..... but time is very short.
Have good video to share? Send it in today.
Have a compelling story to tell? Then get to work today.
Write it down or, better yet, take out your video camera and film away!
Geraldo needs stories about the crisis people with disabilities and their families are facing at all stages of the life span.
Send your video or stories to communications@thearc.org.
For assistance contact Laura Hart, Director of Communications at hart@thearc.org
or Stacy Monoghan, Online Advocacy Manager, at monoghan@thearc.org
Let's make this the beginning of the end of the Waiting List."
In 1972, Geraldo jumpstarted his career, winning an Emmy in the process, with a story about the neglect and abuse of patients with mental disabilities at New York's Willowbrook Hospital. This report led to a class action lawsuit against the state institution. It was settled 3 years later but by then, NY had decided it was time to start moving its patients into community programs. The publicity generated by the case encouraged the passage of a new federal law called the Civil Rights of Institutionalized Persons Act of 1980. This law allows the Attorney General to seek
relief for patients confined in public institutions where conditions exist that deprive them of their constitutional rights. In 1983, NY announced it was closing Willowbrook.
I can't wait for Geraldo to take on the Waiting List! Tune in on January 6.

Snug as a bug...

2008-11-19T15:14:00.003-05:00

I bought a rug for Caden's bedroom and he was so excited about it that he wouldn't let me carry it through the store. He had to hold it across his stroller. Even through checkout he held it, making the cashier come around to scan it. A couple of guys offered to carry it to our car but Caden wasn't having that. Unfortunately he is so in love with his new flooring that a couple times a night we usually have to put him back in bed because he is sleeping on his beloved rug on the floor.

The Child King

2008-11-17T13:16:00.002-05:00

Continuing the previous post's theme about Christmas gifts, here is another great one: The Child King. This is a movie that was released straight to DVD last year and its website describes the film as "the inspirational story of a determined young man with Down syndrome who takes his little brother on a life-changing quest to find Santa Claus at the North Pole." It's truly a gem of a family film and the actor with DS that plays the older brother steals the show. Watch a trailer and buy the DVD here. Added bonus: 100% of the producer's profits go to the Child King Foundation which provides funds and grants to those groups and individuals that assist people with intellectual disabilities.

I love the background story as to how the movie came to be made. Again from The Child King website:

"It is a bittersweet irony that The Child King, an inspirational tale of love and redemption, was born in the midst of a famously tragic event in American history.

In 1993, Jeff Kerr was a federal agent with the Bureau of Alcohol, Tobacco and Firearms (ATF) assigned to the siege of David Koresh's Branch Davidian compound in Waco, Texas- a siege that would end in a horrific loss of life. On the day of his departure for Waco, Jeff had a chance encounter at the Federal Building in Boston, Massachusetts with a fellow agent who had brought along his three year-old son for a visit. The boy was captivating, energetic, full of affection… he also had Down syndrome.

In the following weeks during the long siege at Waco, Jeff found free time to begin developing an idea about two brothers traveling to the North Pole to find Santa Claus. Recalls Jeff, "The Child King was written during off-duty time and while sitting in one of the Jeeps surrounding the Branch Davidian compound. Our Jeep was stationed way out in the dark countryside, the middle of nowhere, with nothing but cows and bulls for company. There were two agents assigned per Jeep and we alternated taking hour-long breaks. During my off-time I would scribble The Child King under a flashlight."The story he scribbled needed a hero. Inspired by his earlier meeting with a certain precocious young man in Boston, Jeff made his hero a teenager with Down syndrome.

Twelve years later he would team with brother Frank, a longtime filmmaker, to finally realize the feature motion picture, The Child King." His brother became the director and co-producer.

I was tickled to receive a phone call from the writer Jeff Kerr after I had placed my order, wanting to confirm my address. Apparently he's handling the merchandising himself.

If you find yourself stuck for a Christmas gift idea, you can't go wrong with this movie!

A Perfect Christmas Gift

2008-11-14T09:16:00.004-05:00

Speaking of adoptions in my previous post leads me to a wonderful organization called Reece's Rainbow. This organization was formed by a mother of a 6 year old boy with Down syndrome to help families adopt children with DS from around the world. In many countries the children are sent to "orphanages" until around the age of 4 when they are transferred to a mental institution. At that point they receive no education, little medical care and will never leave if they manage to live. It is a constant race against time to get these children adopted before being sent to the institutions. On their website you can see children available for adoption now that are most at risk due to their age. You will also see how much money is in their grant fund. Reece's Rainbow accepts donations that become attached to a particular child and goes directly into their fund. This money is an adoption grant to ease the financial burden for the adoptive families as the average cost of an international adoption is $25,000. In 2 years, this wonderful group has helped 120 children find homes.

Have a person on your Christmas list that is hard to buy for? Give the gift of a family and make a donation to Reece's Rainbow in that person's name. They are currently running their Christmas Angel Tree fundraiser until Dec. 15 which allows you to sponsor children who remain unmatched. For a donation of $35 or more, donors will receive a beautiful porcelain ornament with your sponsored child's photo on the back to hang on your Christmas tree. They will send the ornament, along with a beautiful gift card, announcing your gift to the intended recipient while 100% of your tax-deductible donation goes towards the adoption of your sponsored child. Please consider a donation and help a child with Down syndrome find a home and know love. Imagine how different that child's Christmas could be next year...

Strength in numbers

2008-11-12T14:10:00.003-05:00

Waiting list for adoption....I couldn't get past these words. I don't remember a lot of useful information coming from my meeting with a genetic counselor during the process of deciding whether or not to continue my pregnancy. Mostly she shared statistics and medical information that I already knew. But I must give her credit for making this one statement that had a very powerful impact on me. She simply advised, "There is a 100-person waiting list to adopt babies born with Down syndrome." I couldn't absorb this news. One hundred seemed like an awfully large number. I didn't know any person who would want a baby like mine but here were one hundred, ready and willing.

During the following week as the Tank and I continued to wrestle our souls over The Decision, I kept coming back to the adoption waiting list. How could I abort this baby when he was wanted by over one hundred families who would take him regardless of whatever health issues he was facing? What did they possess in their beings that I didn't? I knew I would feel like a failure as a mother if I continued the pregnancy but then put him up for adoption. That 100-person army of love challenged me to find strength in my heart and to become a better person for my son. The waiting list haunted me. Eventually I determined that if these mysterious list-people could do it, I could too.

I'm fortunate my genetic counselor shared this information with me. Studies show that many if not most of the 90% of women who eventually terminate after a prenatal diagnosis were not given this knowledge. Maybe the outcome would still have been the same for them whether or not they were aware of the adoption option. But... maybe not.

A recent Washington Post article states that the list to adopt a child with Down syndrome has now grown to over 200 families. Missouri Senator John Loudon was one of these families and has since adopted a son with Trisomy 21 named Sammy. Loudon was so moved by his experience with Sammy's adoption that while the federal government was working on passing the Kennedy-Brownback bill, he pushed through his own legislation in his state last year called Sammy's Law. The law requires medical professionals to provide accurate up-to-date information on the outcomes of people with Down syndrome to mothers with a prenatal diagnosis as well as to share adoption resources with them.

During the recent presidential campaigns, we heard candidates agree that the ultimate goal for both sides of the pro-life/pro-choice debate should be to reduce the number of abortions. These new laws sounds like a step in the right direction to me. I hope that as more pregnant women facing the same grueling decision that I did learn of the adoption waiting list that they too will find peace and ultimately strength in its numbers.

In honor of our veterans

2008-11-11T13:37:00.003-05:00

Thank you for your service and for securing freedom for someone like my son. No where else in the world could he live the kind of life he is privileged to enjoy in the United States of America. We are grateful.

Live to die another day

2008-11-06T13:15:00.007-05:00

Speaking of my trip to Nepal in my previous post made me recall the tragic news last month that a small plane of tourists had crashed at the Lukla Airport in eastern Nepal, killing all aboard. Having flown in and out of that airport if it can truly be labeled such, I thought I'd share my adventure there. It is a "there but for the grace of God" experience as flying in this region is amazingly dangerous and requires extremely talented pilots.

Lukla is known as the gateway to the Himalayas. Most people going to Mt. Everest fly here from Kathmandu and then begin trekking. It is situated at about 9400 feet and there are no roads in the area, just mountain trails. Flights are very often delayed because of weather. It is windy, in and out of cloud cover, often rainy. I was stuck at the Kathmandu airport for 2 days waiting for good weather which consisted of flying in a cloud. Didn't seem like optimal conditions to me. Every now and then the white fluff would clear and I'd catch sight of the mountain peaks around us which seemed to be eye level -yikes!

The airport is one building beside a strip of dirt carved into the side of a mountain. The landing strip is very short at 1700 feet which appears to be 6" long from up in the air. It is set at an incline of 12% so after landing, gravity helps to slow the plane down as you hurtle towards the side of the mountain. There is no room for error as you approach.

My pilot tried to assure me of his skill saying that he'd never had to pull out of a landing before which was fortunate because there is no way to pull out. In other words, he hadn't wrecked yet. I recalled that information as we circled and circled before landing. He said the weather has to be perfect to drop down on the airport. It was a rough fast landing on dry dirt which has since been paved, surely giving the illusion of added safety. Just when I thought we were destined to crash into the mountainside, the pilot made a sharp right turn onto the helipad and quickly came to a stop. Everyone on my tiny plane (five passengers and 2 pilots, we were nearly on each other's laps) broke into applause afterwards. It is that nerve-wracking. It is often called the scariest airport in the world and I can vouch for that.

As if I didn't have enough to worry about around Mt. Everest what with avalanches, cerebral and pulmonary edema, hypothermia and the like knocking at the door, I couldn't help obsessing about the flight out. I considered walking the entire way back to civilization but everyone assured me it was safer to depart than approach the airport.

The take-off consists of speeding downhill to the end of the strip which is a 2000 foot drop-off to the valley below. If you don't quite pick up enough speed, there is a slight drop as you fall off the edge of the mountain until the plane (hopefully) recovers momentum. Another mountain seems to be in the flight path so the plane must quickly veer to the left to avoid it and continue gaining altitude. Again I had to wait a day for clear weather and I noticed a plane carcass covered by a blue tarp laying beside the runway from a previous crash. Way to instill some confidence. Here is the wreckage after the tarp blew away, in clear view of all approaching and departing aircraft. I've never been much of a nail biter but I nearly chewed my fingers off before takeoff.
I taped my departure but it is on videotape and I have yet to convert it to DVD so I can't share it. Here is a video I found on youtube that gives you an idea of what it looks like outside the plane. Inside the plane is another sensation altogether. Do you ever wonder how you would react under stress? Would you remember to stop, drop and roll? Would you remember self-defense training? Would you blank out and stand immobilized? If I could share the video, you would see that under stress I laugh maniacally. Nice to know I can be counted on in an emergency for some giggles. As it happened, we had a clean takeoff and return trip to Kathmandu and I have a crazy airport story to share.

The lesson from the ink pad

2008-11-03T13:47:00.004-05:00

My son was covered in blue ink when I picked him up from school today. He looked like he'd just auditioned for the Blue Man Group. His teacher expressed regrets that they didn't realize they were doing stamp art with permanent ink until Caden was coated in the stuff. Great, thanks. As I drive home, Caden waves at passing cars as always. I shrink in my seat assuming that the other drivers are labeling me a bad mom because of my child's cerulean condition. As soon as we get in the door of the house, I strip him down and start scrubbing. Nothing works. He is still blue and now a little raw. I groan at the thought of taking him to the hospital tomorrow for his rehab swallow study looking like Papa Smurf.

Because tomorrow is election day, my mind travels back to my trip to Nepal a few years back which coincided with their national election. I spent a month there with 3 weeks trekking the Himalayas, eventually climbing Kala Patar over Mount Everest's base camp. I traveled to and from Kathmandu alone but was met at the airport by a Sherpa I'd hired over the internet (ah, the naivete of youth). On my first day in the country, I wanted to kick the massive jet lag by staying up all day. Sherpa Raj wanted to get the permits and supplies ready for our mountain trip but first I needed lunch. He sat beside me sipping tea while I sampled my first dish of dal bhat (rice and lentils, soon to become my staple meal). Then I spotted his thumb.

"What happened?" I asked, hoping I wasn't being rude in doing so but I was genuinely concerned. It was black, like he'd taken a hammer to it.

"I voted," Raj replied nonchalantly.

"Uh, okay," I was confused but he offered nothing more. I hoped his meaning was lost in the translation and that the voting process didn't involve a hammer to the thumb. "Did you get your hand stuck in the voting machine or something?"

"No, we put our thumbs in ink before we vote." I was still confused but he explained that they use the thumbprint to prove that each person only votes once and is the actual person they claim to be. Once you get through that identification process, you go on to mark your ballot. The permanent ink remains for a few days afterwards, hence the state of his thumb. I started to like the idea. You could also see who had not yet voted and encourage them to do so. He said it makes the voting procedure a long one but to people not accustomed to democracy, it was worth their time. The blackened thumb was a source of pride.

Back in the States, it is too easy for me to fall back into routine and take things for granted. I learned so much during that month in Nepal about what is important in life to me and what I really need to be happy. At the time, Nepal was the fifth poorest country in the world and I understood how very fortunate I was to be born in the United States of America, particularly as a woman. I know too how extremely lucky Caden is to have been born in this country. For all its problems, it is still one of the only places in the world that will recognize him as a human being deserving of education, medical care and a life of his own. The majority of the world does not grow up in an environment where "all men are created equal; that they are endowed by their Creator with certain unalienable rights; that among these are life, liberty, and the pursuit of happiness..." I look at my inked-up son and remember Raj's thumb on this day before we cast our votes. I will be proud and honored to vote tomorrow and will not take the matter lightly. Caden always has a way of getting his point across. I just wish it wasn't in such a bright blue!

Happy Halloween!

2008-10-31T09:45:00.003-04:00

Pumpkins are so much fun!

ROAR! Though very cute, this costume didn't make the final cut (actually it's a little too small and thus too tight on him). He did enjoy roaring and attacking the Tank during the brief time he wore it.

Someone loved his glow stick!

This is my Heisman move.

The UVA football outfit was the ultimate Halloween costume winner for Caden though he refused to have anything to do with the helmet. Wouldn't even carry it.

We have enough candy to last till next Halloween, I believe. Seeing how Caden doesn't like sugar (he only has a sweet tooth for fruit; can't really complain about that but I do find it hard to believe the chocolate addiction isn't a dominant gene he inherited from me), I better grab another cup of coffee and get to work on some nibblin'!

Block Head

2008-10-29T14:59:00.003-04:00

Yesterday I was very under the weather. By afternoon, I was collapsed on the sofa watching Caden play. After several attempts to arouse me by screaming joyfully in my face, Caden decided to simply make the most of an immobile mommy. He started piling up his wooden blocks in an outline around my head. Comforting to know that should an emergency arise, EMT's would certainly find me surrounded by blocks.

The metaphysics of a prenatal diagnosis

2008-10-27T14:22:00.004-04:00

There is a physics theory stating that there are multiple versions of yourself existing simultaneously in different layers in different times. It makes me ponder what the Current Me would tell the Pregnant Me of the Past about life with Caden if our layers overlapped. It was difficult to be excited about my pregnancy when there seemed to be constant doom and gloom from the medical professionals. Knowing what I know now, what advice would I offer to that sad scared version of myself? I wish the Pregnant Me of the Past could have taken a tiny peek into the Current Me's kitchen last weekend.

When the Tank is available on weekends to keep Caden occupied and out of harm's way, I like to get a good bit of cooking done. I enjoy cooking with music playing so I have a flip-down flatscreen tv installed under one of the wall cabinets. I turn on a digital music station and get to work (we don't subscribe to this service and it is the only tv in the house that mysteriously gets the music channels so I'm not complaining). Caden is enthralled by this magic tv that appears out of nowhere. Plus he loves music of any kind so it doesn't take long before he's in my way in the kitchen. I try not to be annoyed and remind The Tank that he will go hungry if he doesn't keep his son entertained. But it is a political season and within minutes, The Tank has become distracted by the googling possibilities of various candidates and plants himself in front of the computer. Caden runs back into the kitchen.

I turn to Caden impatiently and ask him to please go play in another room until mommy is finished. Instead he gives me a big cheeky smile, signs "please", and grabs both my hands in his. He is asking me to dance.

It is a beautiful fall day with sunlight streaming through the single kitchen window. I have a beautiful son that wants nothing more at this moment than to dance with his mother. Always he reminds me to live in the moment. Who could resist?

I turn up the volume and we dance away for half an hour. Sometimes we take solo's, sometimes I hold him in my arms, but mostly we dance holding hands. We both invent a few new moves and showcase our best for The Tank. We all laugh and smile till our cheeks hurt. Who cares about cooking? Life is beautiful.

The Tank had commented that I should hope no one spotted us through the window or they might think we'd lost our minds. I thought, "And why should I care if someone witnessed this fantastically happy moment?" That was when it occurred to me that there is one face I would love to see spying in on us: the Pregnant Me of the Past. I remember how much she wanted to believe that these days would exist. I would wave to her and know after witnessing that scene, she would only need four words of advice: Stop worrying. Start dancing.

Caden on Youtube!

2008-10-24T07:00:00.001-04:00

It's a pretty surreal feeling to find a video of your child on Youtube that you did not put there! And it's already been viewed 981 times. Some stranger was so touched by the encounter between Palin and Caden that he made this Youtube video. It starts with her signing Caden's sweatshirt saying she loves it, it's beautiful. She looks for us, then beelines for Caden. It even catches his sweet sweet hug and Palin saying "I love him!" when she hands him back. Politics aside, this is truly touching.

Cadyn Skynyrd

2008-10-23T11:34:00.004-04:00

Caden had his first recital for music therapy. Of course he didn't perform live as well as he practiced at home but he is so very 3. However at the end, Caden morphs into Cadyn Skynyrd.

Sarah Palin meets a rockstar

2008-10-22T09:57:00.002-04:00

For a little more info on how she got so lucky, please visit Patricia Bauer's blog.

A Ghost in the Window

2008-10-15T10:59:00.004-04:00

Ding dong!

Crud, the doorbell was ringing while I was giving Caden a bath. Who was calling on us this late in the evening? I suspected yet another visit from Obama supporters. That's the fun part of living in a swing state.

I called to the Tank to answer the door. He was in the basement trying to fix the wheel of my jogging stroller. The ball bearings had fallen out (no, I don't take him offroading!) and though the stroller is only 3 years old, the manufacturer no longer supplies parts since they have discontinued that model. Of course.

By the time the Tank opened the door, I was certain the visitors would be gone. From the bathroom, I could hear him call out "Thank you!" before closing the door. We must have left the lights on in the car and some passerby was kind enough to alert us, I thought.

Then the Tank handed me a small bag of Halloween candy and toys he'd found on the porch. There was a note inside explaining that it was a secret buddy game. Someone had "boo'd" Caden and now it was his turn to pass it on and "boo" 2 other kids. There was even a ghost image to put up in the front window so other people would know we'd already been hit. The Tank said Caden's boo buddies were hiding in the bushes, hoping to see him pick up the surprise but when the Tank opened the door instead they took off running around the side of the house. He couldn't tell which probable neighbor it was but tried to call out thanks after them.

I remember this game being played last Halloween. I thought all the ghosts in the windows were part of some school project because every house with a child had one. Eventually we were boo'd, the day before Halloween. It was too late for me to put together a goodie bag to pass on even if I could find a house that hadn't already been boo'd. I was grateful Caden had been included but saddened that he must have been the last kid in town to put a ghost up.

Not this year. I had seen NO ghosts so far. In fact, I had forgotten about the game. I hung Caden's ghost in our bay window with a lump in my throat. I'm embarrassed to admit that I actually drove around the neighborhood to confirm my suspicions that this year, Caden was one of the first to be boo'd. Yep, less than a half dozen ghosts were posted. I wish I knew the identity of Caden's secret buddy so I could hug them again and again. They have no idea how much it means to have my son included like any other kid on the block. I'm generally thankful to have him be acknowledged at all but to have him be so accepted was unexpected and humbling. In our home, thanksgiving is coming over a month early thanks to our ghost in the window.

Vote for Warren Sapp!

2008-10-10T08:44:00.003-04:00

If you didn't have a favorite on Dancing With the Stars, well you do now! All we hear from the participants on the show is how tight their schedule is by the time they are informed if they survived for one more week of competition to choreographing and practicing a dance, getting fit for a costume, dress rehearsals, promotions, etc etc etc. Yet somewhere in that busyness, Australian professional ballroom dancer Kym Johnson is working with the Down Syndrome Association of LA to hold weekly dance lessons for individuals with DS. She says, "Seeing how much they enjoy doing the dances, it’s fun for me. It’s kind of selfish, actually.” She even hopes that this may lead to a performance for the group in November. How awesome is that? Her partner on the show is NFL star Warren Sapp so don't forget to vote for them this week! For more on Kym's classes with the DSA of LA, read a newspaper article here.

Brillante!

2008-10-07T13:45:00.005-04:00

I was nominated for my first web award yesterday by Jessica of Raising Joey. Thank you so much! I am flattered and will now pass on the honor per the following requirements:

1. The winner can (and should, really) put the logo on his/her blog.

2. The winner must link to the person from whom they received their award.

3. The winner must nominate at least 7 other blogs for an award.

4. The winner must place links to those blogs on their own blog.

5. The winner must leave a message on the blogs of the people they’ve nominated.

And here are the nominees:

1. Kristi at The Winchester Mantoni's...and other stuff

2. Sarah at Class of 2008

3. Tara Marie at Emma Sage

4. Gayla at Where Are My Angels

5. Angie at Dancing in the Rain

6. Sheree at The Phamily Blog

7. Trina at Trina Riggott Photography

Down Syndrome Awareness Month

2008-10-06T14:06:00.002-04:00

October is Down Syndrome Awareness Month. In celebration, many locations across the country will be holding Buddy Walks. You can find one near you here. Just type in your zip in the box at the top.

Also, from September 26th- October 9th, Regal Entertainment Group will air this special public service announcement in 6,700 screens across the country.The Today Show Co-Anchor Meredith Vieira, Actor John C. McGinley, Baseball Star Albert Pujols of the St. Louis Cardinals, Access Hollywood Co-Host Nancy O’Dell, and former actor from the TV series 'Life Goes On' Chris Burke, and other self-advocates have come together to help raise the awareness for people with Down syndrome. Find a Regal Cinema location near you here.

Passing the torch

2008-10-02T10:52:00.002-04:00

Last Friday I went to an area Gold's Gym while Caden was at his special ed preschool. There were signs everywhere requesting volunteers for the regional Special Olympics competition being held two days later on Sunday. The gym was hosting the weightlifting events and the remaining events were being held at 3 other local venues. I was shocked that this was the first I'd even heard about the S.O. being held in my town. I read the daily newspaper out of Harrisburg regularly as well as two weekly small-town papers. There was NOT ONE mention in any of these papers about these Games. No wonder my gym still needed volunteers. I signed up and even volunteered the Tank as well. Cool beans.

On to spinning class. At the end of class during the stretches, the instructor got the group talking about weekend college football games. As they drained that topic, someone asked "What else is going on this weekend?" I waited and could not believe that the instructor didn't mention that her employer was hosting these games. I blurted out "The Special Olympics will be RIGHT HERE at the gym on Sunday!" Cricket, cricket. Silence. No one even looked at me. Finally from behind me someone mentioned upcoming high school football games and that was that.

Sunday arrived and the Tank and I were ready to go when Caden decided to have one last poopie explosion in his diaper before we hit the door. We were taking Caden with us since my gym offers childcare and he might even want to watch some of the competition. Now we were running late but there is just no rushing our kid. He runs down our front walk only to hit the sidewalk and stop to dance. Then a run over to the car parked behind ours so he can blow kisses to his handsome reflection in the shiny door. As he's finally climbing into the car seat, he notices the velcro on his shoes is pretty cool and bends down to have a few rips at that. AAGGHHH! After getting Caden buckled in, I take a deep breath to revive what little remains of my former Type A personality and tell the Tank to step on it. We go no further than 3 blocks and traffic is stopped. What NOW? I see police cars and people running down the center of the street...what the hay? And then I spot the torch. Held up high over the head of a man with Down syndrome. It's the torch run to kick off the Games. The torch bearer is surrounded by other athletes and volunteers as they run up to the middle school for the opening ceremony. Frank breaks out his camera and chases after them. I bust into tears.

We are walking distance from my house yet I had no idea that this procession would be passing by this morning. Obviously my neighbors were also in the dark as there is NOT ONE person lining the route. Nobody to cheer them on. I can only imagine that one day Caden may be the young man carrying the torch. If so, I can promise you this: there will be press and advance notice about the Games. But for today's competitors, I am angry at the lack of community support and filled with a determination. I jump into the driver's seat, back up and zoom down to the next intersection, ditching the Tank. I hop out as the procession approaches, clapping and yelling like a mad woman. "Way to go! Go get 'em today and have fun! Looking good!" Everyone in the runner's group says thank you and offers a wave, even the guy carrying the torch. In fact he hoisted it even higher with pride. I continue bawling as they run out of sight. Then I remember to drive back and find my stranded husband.

At the gym I am especially pleased at the number of volunteers that arrive. There were even 2 current world record holders in powerlifting helping out. Once the bench press got under way, the Tank and I were no longer needed as volunteers but we stayed to serve as cheerleaders. The only people in this back room were the athletes, their coaches and some family (this event brought teams from many counties away so most athletes had no family present) and the volunteers. I was peeved that out of all the gym members who came to work out that morning, NOT ONE bothered to so much as peek into this room. There was a big welcome table in front of the main door so there was no mistaking that the S.O. were being held there at that moment. Just five minutes of cheering from each of those gym members, or from even half of them, would have taken so little effort yet meant so much to these amazing athletes.

And about these athletes, I can say without a doubt that they are among the best on the planet. Their support and respect for each other, their joy and pride in simply being a part of the day, their sportsmanship and camaraderie was all exemplary. I had a frog in my throat as I struggled to hold back tears. I clapped till my hands hurt, gave out high-fives and even some hugs and had my soul filled to the brink with inspiration and hope. The summer Beijing Olympic games were impressive and Michael Phelps is awesome but this... was... beautiful.

I try to imagine Caden competing in 20 years. I hope that if we as his family cannot attend for whatever reason that there are volunteers or, dare I dream, spectators to encourage and congratulate his efforts. I hope that the local press will not only advertise the Games in advance but then will report on the results afterwards. These competitors deserve nothing less. They trained hard, some traveled far, they did their best and they deserve some type of recognition from the community.

I hope other regions are more keyed in to their S.O. programs. I truly hope that my town is not representative of others but just in case, here is the Special Olympics website where you can find local events and volunteer opportunities for yourself. Use the "find a location" button at the top of the page. And then go support others and enjoy!

He gets it honest

2008-09-29T16:06:00.003-04:00

C'mon, you know you can't wait to try it!

It passed! It passed!

2008-09-26T09:19:00.003-04:00

The Kennedy-Brownback bill, also known as the Prenatally and Postnatally Diagnosed Conditions Awareness Act and co-sponsored by John McCain, was passed by the Senate on Tuesday and the House joined them yesterday. Now on to the President and it will be law - woohoo! This is an amazing collaborative effort between advocates on both sides of the abortion issues. Those that are pro-life hope that more babies prenatally diagnosed will be born rather than terminated and those that are pro-choice are creating a more informed and thus empowering choice for women. Having experienced a prenatal diagnosis, I can personally attest to the fact that the doctors delivering the news do NOT provide accurate up-to-date or supportive information. A woman is not making a true choice when the only option explained comprehensively is abortion.

Medical professionals receive little if any training on persons with disabilities in medical school or during their residencies. My OB pointedly said that he knew little about Down syndrome because that is the pediatrician's realm. However you don't see a pediatrician if the baby is never born. Any info pulled together while pregnant tends to be about the increased risk of certain medical conditions associated with DS. I know the doctors have liability issues and need to inform their patients of all these negative possibilities to cover themselves. However they completely neglect to inform their patients of all the positive probabilities or of all the support systems and resources available. They leave a woman scared out of her mind, pregnant with a condition rather than a loved and wanted child. It is no wonder that termination rates are over 90% after receiving a prenatal diagnosis.

My genetic counselor offered to schedule an abortion for me. She even recommended that we go ahead and make the appointment with the knowledge that I could cancel it later should I "change my mind". She made that option easy. She did not offer to schedule an appointment with a social worker, a special education teacher, an Early Intervention therapist, or even a parent of a child with Down. I can reflect now that I had NO accurate representation of what life would truly be like with my son. That was a complete disservice to me as a patient and as a woman trying to gather as much information as possible to make the right decision for my family.

My doctor had diagnosed hydrocephalus, cardiac calcification, an enlarged abdomen, a misshaped bladder with possible kidney reflux, among other things throughout the pregnancy. Each ultrasound seemed to find something new. Then 3 weeks before the due date, the blood flow and pressure to the baby through the umbilical cord was decreasing. He appeared underweight and there was also suspected meconium aspiration. Labor was induced and with each contraction his heart rate dropped. A bed was prepared for Caden in the NICU (Newborn Intensive Care Unit) whose staff was present in the delivery room, ready to whisk my baby away. Instead Caden came out pink and screaming. He got a 9 on his Apgars, was a pound heavier than they predicted and had none of the expected problems. He did have the extra chromosome and he did develop jaundice which kept us in the hospital for five days but he didn't spend one second in the NICU. I very much respect my OB and know he was doing his absolute best for us. Still, if he could be so wrong about Caden's prognosis in the short-term, how could he be expected to provide a long-term prognosis when I first received the diagnosis? He referenced "quality of life" several times with the insinuation that my son's might be compromised. Yet I could feel this little guy kicking, turning and hiccuping in my belly and nothing felt out of the ordinary. Thank goodness I listened to my pregnant gut and not my well-intentioned though ill-advising doctor. I shudder to think how close I came to losing the best thing that ever happened to me.

This bill is a step to remedy this whole process. It provides for families to receive scientifically sound information about the nature of the condition involved, as well as to help them make connections with support services, websites, hotlines and parent networks. The bill also provides for the development of a national clearinghouse of information for parents of children with disabilities, expansion of peer-support programs, the development of a national registry of families wishing to adopt children with disabilities, and education programs for health care providers who give parents the results of prenatal tests.

The political parties might be jousting over the financial bail-out but I am thrilled to see them pull together to decidedly give women the power of a choice that is informed. This is politics working for the people. This gives me hope.

Stormy weather

2008-09-25T16:11:00.005-04:00

Any day's a good day to play outside, even when it rains.

Praying with Lior

2008-09-22T14:44:00.002-04:00

What a way to return to the movies! I have not seen a movie outside my home since Caden was born. Well, I did try to take him to a couple of those free Family Day shows that various cineplexes offered over the summer but we never lasted more than 20 minutes and I don't count the cartoons they showed as "going to the movies" anyway.

Praying with Lior is a must-see. The documentary follows a 13-year-old boy with Down syndrome through his bar mitzvah. Its themes however cross all religions and will really make you ponder the meaning of faith, prayer and ritual. It will make you think about community, tolerance, inclusion and family. It's so beautiful and moving I'm welling up again just writing about it. I was emotionally exhausted after seeing it and am still thinking about its storyline today. I love when a film has the power to do that to a viewer.

At various points I was sobbing with joy, sadness, pride, despair, even simultaneously with laughter. Yes, I was sobbing. It was embarrassing the amount of saltwater rolling off my face. Fortunately snacks had been provided beforehand because all I had to catch my tears with was a cocktail napkin I'd shoved into my empty Dixie cup. Unfortunately it was smeared with the frosting off a chocolate cookie which blended rather well with my mascara to create an extreme work of art on my face. At least I was not boohooing alone. The Tank was choked up. I heard sniffles and noses being blown everywhere. I saw hands wiping cheeks from the silhouettes seated in the rows before us. The lady directly in front of us even crumpled onto a neighboring shoulder (hopefully it was someone she knew). No one was unaffected.

We had the added bonus of a Q and A session with the filmmaker directly afterwards which was equally amazing. I loved the questions that emerged and the dialogue the film was creating. Quite an impressive night.

There's a trailer on the website as well as a schedule of screenings. The DVD isn't out yet so I strongly suggest attending one of these screenings if it's in your neck of the woods. Don't forget your Kleenex.