He was just a little excited about his party. Just a little...
Friday, June 19, 2009
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?
Monday, June 15, 2009
Friday, June 12, 2009
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.
Wednesday, June 10, 2009
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!
Monday, June 8, 2009
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.
Tuesday, June 2, 2009
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.
Friday, May 29, 2009
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
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
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
Thursday, May 14, 2009
Friday, May 8, 2009
Thursday, May 7, 2009
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
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
Wednesday, April 29, 2009
He will be going on his first date with a girl from his typical preschool to a Wiggles concert. I am so excited for him. The classmate's mother called as soon as the tour date was announced to see if Caden would go with her daughter to the show. She said she had asked her daughter if she wanted to take a friend along and the first name she said was Caden. How touching is that? The mother asked "So you're going? I can tell Katie that Caden will be with us?" After I agreed, I heard her give the news to little Katie who shouted "Yay!" I know Caden will have so much fun at the concert as he loves the Wiggles but this is like a dream come true for me. I worry about if he'll have friends and how he is accepted at school but apparently, I worry over nothing. He's doing just fine.
Monday, April 27, 2009
...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.
Thursday, April 23, 2009
At the Positive Exposure lecture, there was one person in the audience I was particularly thrilled to see: my geneticist. After receiving my prenatal diagnosis, we met with this woman to discuss Down syndrome, hydrocephalus and the other conditions the doctors suspected at that time. She didn't tell us much we didn't already know but that was helpful too as she managed to confirm the accuracy of some of the info we'd read on the internet. And you know how that is. You start googling a medical condition and get the wits scared out of you.
She gave us a phone number where we could still get an abortion performed 5 1/2 months into the pregnancy and that was that. No followup from her until the Gifts book was released. I had a book signing at a local Barnes and Noble and invited the genetics counselor as well as other doctors and specialists we had seen. She informed me by phone that she could not attend but would buy the book and was excited to read it. I gave her permission at that time to give my name and number out to any patients she saw in the future with a diagnosis of Trisomy 21. I had not heard from her since.
But there she was in the audience of this presentation celebrating the beauty of genetic differences. It was fantastic to know she was interested. And she wasn't only interested in the photographer's slide show. She was extremely interested in me and Caden. Every time I looked around, she was watching us, smiling. I wondered how often she saw her clients like this, 4 years after their worlds were forever altered. Could she tell that Caden is the best thing that ever happened to me? Could she see how madly in love with him I am? Could she see that he is far from suffering and is smart, funny, extremely sociable and living a big life? As if to emphasis that point, about halfway in to the talk Caden inexplicably turned around and waved to this curious stranger with a huge happy grin.
At the end of the lecture, Caden gave the photographer a hug which included his trademark patting on the back. Over my shoulder, I heard "I am so jealous!" It was the geneticist. I tried to get Caden to hug her too but he was already ascending the stairs out of the auditorium. When we reached the top and crossed over to the exit, I looked back down at the remaining crowd. She was still there, still watching us, still smiling.
Tuesday, April 21, 2009
Friday, April 17, 2009
We took Caden to a township-wide Easter egg hunt. There were tons of kids in each age group. When it was time for the 3 year olds, Caden was quickly left in the dust as the other kids ran ahead and filled their baskets. Caden managed to score about a half dozen eggs. He would lift an egg, yell "Yay!" and turn to leave like the game was over. We had to keep telling him to get back in there and look for more eggs. With his fine motor skills being what they are, by the time he grasped an egg and tossed it in the bucket (if it went in and he didn't have to start over with picking it off the ground), the kids around us had picked the ground clean. Then Caden started collecting the broken half-shells of eggs and was just as thrilled to find these. I watched as parents huddled around their kids, counting their stash and looking for any prize-winning eggs. Caden was alone on the field by now but still signing "more".
"It's all done, buddy," I told him and walked him over to visit the Easter Bunny. We certainly didn't find the most eggs and may have even found the least in his age group. But this is one of the important lessons I've learned while raising Caden: the final score really doesn't matter. It's about just being in the game at all. And most importantly, having fun while you're doing it. It was freezing cold, bitterly windy, but Caden ran around the park afterwards for nearly an hour with his Easter bucket. He waited in line to hug the Easter Bunny twice. No one was as excited as my son simply to be there that day. In that respect, he beat them all.
Wednesday, April 15, 2009
Caden and I were walking out of gymnastics class when another mother pulled me aside. We hardly miss a weekly lesson yet I rarely do more than exchange smiles with the other parents. They chat with each other during the 45 minute lesson while I am actively assisting Caden with the exercises. They appear to all be friends now and though they are pleasant to us, I feel like an outsider at times. But Caden needs me and the class is about him having fun, not me making friends anyway.
So I was a bit taken aback when this other mother who is five months pregnant gestured to me as we finished putting our shoes on.
"I have to tell you," she said, "Our boy name for the baby is Caden." I hardly knew what to say. I was shocked silent. I think I managed to say something eloquent like "Oh wow."
"My husband heard you call to your son in here one day," she continued, "and he told me that he really liked the name. He kept saying Caden, Caden at home and then we agreed that was the name if we have a boy. We're waiting till the birth to find out the sex. We're going to spell it the way you do too." Another mom had walked over and was now smiling at me as well. She obviously had heard this news already.
I remember when The Tank and I were trying to select a name during my pregnancy. We'd bounce possibilities off each other for reactions: no, reminds me of my crazy aunt; no, reminds me of a bully in school; no, reminds me of a rude co-worker. Many names were eliminated because one of us had a negative association with it. I pictured this woman and her husband at home testing out Caden's name. Apparently neither of them said: no, reminds me of the boy with Down syndrome at gymnastics. The fact that there was no negative association with the name and that this mother seemed genuinely excited to share her selection with me was mind-blowing. I was floored and honored simultaneously. And I still had trouble finding any words to speak.
"What will the middle name be?" was the best I could do. She answered Michael, after her husband. Caden Michael. I told her how much I liked that pairing as my Caden bolted out the door, ready to go home and willing to take drastic measures like running into the parking lot to regain my attention.
There in this woman's belly grows a possible Caden who might have been a Landon or Hank had she not encountered my beautiful son in gymnastics class. It took me so long to absorb her surprising words that I didn't start to tear up until we were driving home. What an amazing compliment.
Monday, April 13, 2009
"Is that Caden?" the young woman asked me, gushing all over my son without waiting for my reply. We were in line for a child's ride at Hershey Park and this fellow guest was passing by when she spotted us. She looked vaguely familiar but I couldn't place her. She knew my son from....where? Gymnastics, the hospital, pre-school? I couldn't make the connection but she seemed excited to recognize us and Caden was having fun hamming it up with her. Let him have her attention then.
I'm shocked at how often this recognition happens. One day last summer I had taken Caden to a theater and about five minutes into the movie he had a massive diaper explosion. The bathroom didn't have a diaper-changing table so we set up shop on the floor in front of the sinks. In walked another mother with her young son but being in the middle of a fantastic mess, I didn't look up. Then I heard the familiar question, "Is that Caden?" I couldn't believe it. Of all times to be spotted! "We had storytime at the library with you guys," she offered. I seemed to recall her face but her son had changed so much I didn't remember him. It had been 3 years since that 4 week infant reading program but she still knew my boy.
A woman even recognized us from our running route. It seems we pass her house when I attempt to push Caden in the jogging stroller (he's not getting any lighter). I have no memory of ever seeing this neighbor in her yard or even through a window. But here she was asking us to stop by on one of our runs for our children to play together.
This is the consequence of my child being 1 out of 800, which is the rate of live births of children with Down syndrome. The other 799 children may not be as easily distinguished as that singular child whether the exception is due to sex, ethnicity or a disability. Everyone remembers the little boy with Down syndrome at swimming lessons. All of our neighbors recall the little tiger with Down syndrome that came around trick-or-treating at Halloween. We may not know them, but they know us.
Rather, they all know Caden. I once visited our local pharmacy alone. I had been at least a weekly visitor for the last two years at this business and every visit had the pharmacy counter clearing out as the employees gathered around to hug my son. However on this particular visit they had no idea who I was without him at my side. Apparently they never really looked at me before, just my beautiful boy.
Sometimes it catches me off guard to have people I don't recognize speaking to Caden. But he is such a social butterfly and basks in his popularity. And it does give me pause to consider that we are always being watched when we are out. I'd like to think that after all these friendly greetings from strangers that we are opening eyes and hearts as we go about our day. If so, the credit is all Caden's. He was born ready to be an ambassador of good will.
Thursday, April 9, 2009
Wednesday, April 8, 2009
She ran up behind Caden all smiles. He hadn't spotted her yet but the look on her face alone tripped my heart.
We were at the gym and I was dropping Caden off in the babysitting room. He goes infrequently because of all his other commitments (his schedule is busier than mine!) but today he had no school, no therapy, no doctor visits. He absolutely loves to play with other children so that was my motivation to go work out while he played with his "friends", his sign for the other kids there.
He was excited to go and was yelling "Yay!" in the parking lot. A typical preschool classmate of Caden's noticed us entering and rushed over. His back was to her as she beamed with delight.
"Caden, look who's here," I said and finally he turned. He recognized her immediately. It was so clear how happy they were to see each other as they stood closely, practically nose to nose, waving, saying hi and sharing smiles.
The little girl's mother approached, saying "She talks about Caden all the time at home. She loves him! Too bad we are leaving." Our kids said their goodbyes and Caden recovered quickly, running across the room into a playhouse. I was ready to burst. It fills me with such joy and hope to watch my son interact with his peers and know he is accepted. I worry about when/if that will change. But for now, I soak up the purity and beauty of these early friendships. He is just one of the gang at this age and I couldn't be more proud.
Thursday, April 2, 2009
Tuesday, March 31, 2009
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.
Thursday, March 26, 2009
Monday, March 23, 2009
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.
Friday, March 20, 2009
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.
Monday, March 16, 2009
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.
Friday, March 13, 2009
Wednesday, March 11, 2009
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.
Monday, March 9, 2009
Friday, March 6, 2009
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.
Tuesday, March 3, 2009
My son is not....
a wasted life.
drooling in a corner.
better off dead.
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.
living with regret.
missing out on life.
better off without my son.
teaching my child more than he teaches me.
My son is...
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.
deserving of all I can give him and more.
the best gift I have ever received.
Monday, March 2, 2009
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.
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.
Thursday, February 26, 2009
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..
Friday, February 20, 2009
Wednesday, February 18, 2009
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.
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.
Tuesday, February 10, 2009
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!
Friday, February 6, 2009
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.
Thursday, February 5, 2009
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.
Friday, January 30, 2009
"You are lucky". Short and sweet. That was all the woman behind us in the grocery store check-out said to me. No explanation given from the smiling stranger.
Was I the lucky one millionth customer served? Was I lucky to get the last package of Dunkin Donuts Vanilla coffee? Was I lucky to not get a cart with a screwy convulsing wheel? No, I knew she was referring to my beautiful rockstar child seated in the grocery cart at the end of the lane. When I've heard similar statements in the past, it's usually followed by the person sharing how they garnered an appreciation for a 47th chromosome like "I have a grandson with Down syndrome" or "I teach special education". But this woman offered nothing further. She was gazing at Caden still so I too turned to join in her admiration.
And there he was in all his glory. Suffering from a feverish cold with snot running out of his nose, both hands shoved into his mouth so he could chew his thumbs (I think this helps when his ears hurt), droning "aaa, aaa, aaa, aaa" while kicking the plastic shopping bags hanging beside him. I wondered how many people must be questioning why I had him out of the house but after 2 days holed in from the weather, we were out of the basics. I searched for a tissue wishing he was feeling better to appreciate this compliment.
Caden spotted us eyeing him and his face lit up with a brilliant smile as he waved. Then the cashier said "awwww" which sent him into high ham mode. He double-waved to both the shopper behind me and the cashier joined by a flirty sideways "hiiiiiiii!" Then he brought both hands up to his mouth and blew them simultaneous kisses, which of course made his new fans melt. "He's so cute!" "I want to take him home". Now the lady checking out beside us is joining in with "What a darling!" as Caden reached out to hold her hand. Just like that, their hearts were stolen. To seal the deal, he turned back to me with a big you're-still-my-favorite hug and a gentle stroke of my hair. Oh, how I love this boy.
I turned back to the woman waiting in line. She was clutching her chest with both hands. "Yes," I said, "I am lucky."
Thursday, January 29, 2009
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.