Friday, May 29, 2009

Compassion and independence

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.

Tuesday, May 26, 2009

Mama

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!

Friday, May 22, 2009

Questions that require no answers

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.

Monday, May 18, 2009

Tumbling into inclusion


"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.

Thursday, May 14, 2009

LSD


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.

Friday, May 8, 2009

Let's hear it for moms


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.

Thursday, May 7, 2009

Best of Apple Blossom 2009

video

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.

Tuesday, May 5, 2009

Heard a new one

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.

Friday, May 1, 2009

Everybody throw your hands in the air


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.