Wednesday, November 4, 2015

Own That Ride

    Caden has a no-nonsense speech therapist. She is not fooled by his charming attempts to distract her and realizing the importance of her techniques being repeated often and correctly at home, she includes me in each session, provided I am not a distraction. She is not afraid to tell me when to assist - and when not to ("Now mom, he's never going to do it on his own if you always prompt him". Doh!) Yesterday was the first day I thought she might actually kick me out of the room. I had one of those giggle fits that just won't leave you alone. I laughed until I cried and just when I thought it was out of my system, boom! The laughter snuck out again. I tried to stifle it but was nearly convulsing from the effort. It was almost painful.

    Caden was doing his usual delay tactics to keep from doing the work: clearing his throat, shuffling and reshuffling his speech cards, readjusting his chair. This therapist has other-worldly patience and waits him out while I am at my wit's end swallowing my maternal need to tell him to cut it out. He finally starts vocalizing his word list but is fidgeting in his chair, even rocking it up onto the back legs. Suddenly his eyes widen as he starts to lose balance. He tries to recover by throwing his torso forward but it's too late. Realizing he's going over backwards, he gleefully throws both arms up in the air and exclaims, "Wheeeee!" The last things I saw were his feet rising straight up in the air from behind the table before he hit the ground. He quickly got up and righted his chair. He was clearly okay but that image of him going down with arms and legs out, saying "Wheee!" like it was some amusement park ride killed me. I didn't want to look like a bad mother and I truly tried to stop laughing but it was useless. It was such a classic Caden move. Knowing he was going down, he figured he might as well go big and enjoy the ride! I'm still chuckling today though I'm worried I may be banned from the next speech session. And if anyone is having a tough day, just take a page from Caden's book: own that ride and say wheee!

Friday, October 30, 2015

By the light of the moon

    I remember worrying about Caden's future after getting his prenatal diagnosis of Down syndrome. There were a lot of unknowns with his multiple health issues and I wasn't very familiar with life with an intellectual disability. I worried that our fast-paced world might leave my son behind and that he might miss out on a lot of experiences.

    This morning well before dawn, I was startled awake by Caden yelling from his bedroom, "Mommy! Daddy! Come here, quick!" In a panic, I raced down the hallway to find him standing in the dark at his window.

    "What's wrong?" I asked as I moved forward to make sure he wasn't injured, bleeding, vomiting, or suffering from any other scary nighttime malady. 

    "The moon!" he gushed, pointing outside. I took a peek and indeed, the moon was stunning. Nearly full and glowing like a huge spotlight in the sky, it illuminated our entire backyard.  Though the scene was a daily familiarity, the bright darkness made the landscape appear foreign. It reminded me of old black and white negatives with the colors reversed so that images must be studied for a bit before they are recognized. 

    While I was sleeping to recharge for another busy day, Caden was the one catching an incredibly beautiful moment. And he wanted to share the world he was seeing with his mommy and daddy. Had I been awake first, I most certainly would not have given the moon its proper due if I had noticed it at all. Soon the sun would rise and our surroundings would return to normal. I stood at the window cherishing the fleeting vision.

    I used to worry that Caden would miss out on a lot by not being able to keep up in a fast-paced world. He reminds me that sometimes that fast-paced world causes us to miss out on a lot. Thank you, son, for waking me up to the moon.

    Happy Down Syndrome Awareness Month!

Friday, October 2, 2015

Celebrate the gap!

October is Down Syndrome Awareness Month! Three cheers for that third 21st chromosome!

Did you know that certain physical characteristics are more common with Down syndrome? These features include almond shaped eyes that slant up rather than down, a flattened facial profile, shorter height, low muscle tone and excessive flexibility, a simian crease ( a single crease across the palm of the hand), and small ears. An individual may have most or just a few of these traits.

Another common feature is called sandal gap which is an increased space between the big toe and the rest of the toes. Medically, it may be considered a deformity but functionally, it is a splash pad jackpot. Caden can funnel water through that gap and hose people down like nobody's business. And by "people", I mean me. He's my little terror in water parks!

Tuesday, September 29, 2015

Kicking Down Walls

I could tell he was uncertain, maybe nervous, choosing his words carefully and probably hoping not to offend me. He presented a list of reasons that his proposition would be beneficial to all involved, himself included.

"Do you think Caden would be interested in being the assistant team manager of our girls soccer team?" Coach J asked. I could hardly reply. Was this really happening?

Caden started playing soccer with a community organization called Soccer Shots when he was 5. Before signing him up, I remember anxiously emailing the founder, Coach J, to see if he thought Caden might be able to participate successfully. I wanted it to be a positive experience for everyone and I wanted him to be safe. Caden didn't walk until he was 3 so even at the age of 5, he was still mastering running and kicking. I wasn't sure if this was a highly competitive group or if the coach had experience with any children with special needs. His reply was enthusiastically supportive: yes, he would love for Caden to join Soccer Shots. Whewwwwww. The heaviness of bated breath while waiting to see how your child might be received in new environments is agonizing so the exhale upon reassurance is profound.

Caden loved Soccer Shots and participated for a couple of years until he aged out. It was primarily for preschoolers through kindergartners but Coach J was kind enough to let my boy continue to play an extra year. Eventually we moved on to TOPSoccer, designed specifically for children with disabilities. Caden continues to play with this group and very much enjoys it. Occasionally we'd run into Coach J at random events and he was always very interested to catch  up with Caden's progress and proud to know he was still playing soccer.

And then out of the blue, I recently received a phone call from Coach J saying he still thought about Caden and sharing how much he learned from him. He was currently coaching his daughter's travel soccer team, the Hershey Force, and was interested in finding a way for Caden to be involved.  He wanted to make it an inclusive experience and he felt it would be a great opportunity for Caden to grow, as well as the players. He was open and upfront, asking about proper terminology when speaking about Caden and how to handle any questions the girls might have. He had thought out some possible duties and wanted feedback on them. He even had a title ready: assistant team manager.

I hope I spoke coherently. It was such an unexpected moment of elation. Caden is involved in many inclusive activities but in nearly all of them from school to TOPSoccer, he has an aide or a buddy at the ready. He is the one always needing help. But this was a chance for him to assist others and to have responsibilities to make him proud.

And as his mother, the best part to me was that it was an opportunity I did not initiate. I wasn't the one making the call asking for out of the box thinking for ways to include my boy. I wasn't the one making the list of possible tasks or offering ways to make it successful. It was all someone else's doing. The tables had been turned. I loved it and I barely knew how to properly respond. I wanted to dance. I wanted to cry. I wanted to thank Coach J. I especially wanted him to know how incredibly meaningful this was to us. It makes my heart explode to know that someone not in our immediate circle thought to himself, "Hmm, I wonder what opportunities are available for Caden? I'm gonna call and ask and I'm going to create something for him". This is inclusion. This is community.

Is Caden interested in being assistant team manager. Pick-an-expletive yeah! He wouldn't miss it!

The first home game for Caden was this weekend. He beamed - no - he BEAMED standing next to Coach J during the pre-game preparations, handing out player cards, organizing water bottles and helping with warm-ups. During the game, he sat next to the bench with a clipboard so he could keep track of which players scored goals. Afterwards he helped clean up, high fived the other team, and then joined his team as they ran across the field to thank the parents. When he spotted me and The Tank, his grin took up so much of his face that his eyes disappeared. Other parents clapped for Caden instead of their daughters. "Good game, Caden!" "Great job, Caden!" I'm sure there's no crying in soccer but the appreciation cannot be contained when you have this kind of community helping to kick down walls for your child. They are indeed the Hershey Force.

Tuesday, September 8, 2015

Squeal Together



"Why is he acting that way?" asked the 8 year old boy sitting in front of me on the swings. He was speaking of Caden, seated behind me. We had just finished one turn on the ride and since there was no line, the ride operator had offered us all another go. This young boy could hear Caden squealing with joy while Frank and I couldn't stop laughing at his glee during that first ride. The boy had actually moved seats to be closer to us after that, explaining, "Whenever I see such happy faces, I can't resist!" But now he was getting a better look at Caden and was curious. I looked over my shoulder at my son and saw nothing but excitement.

"Because he's happy," I answered, thinking it should be pretty obvious. The little boy watched and pondered Caden some more as he babbled away in his unclear speech and made nonsensical sounds of delight.

"Does he have braces?" he guessed.

"No braces - yet," I replied ."But he did have ten teeth pulled earlier this year. Are you seeing the gaps in his smile?"

"No. I thought maybe that's why he couldn't talk. Because he has braces."

I typically explain to children that Caden has low muscle tone so speech is difficult for him but he can use sign language and his iPad to communicate. This is usually pretty interesting to other kids, even giving my boy a cool factor. But I was so humored by this boy's idea that people who get braces can't talk that I couldn't go into teachable moment mode. No matter. The new friend had moved on and was asking us if we were going to ride again, even though we were still waiting for our current turn to begin. Once we got going, he echoed Caden's squeals and commented on how much more fun the ride was while doing that. He spent the majority of the ride nearly turned backwards to watch Caden and share in our happiness.

To me, this is life with a disability in a nutshell. Other people notice differences. It's only human. Sometimes they stare, sometimes they ask questions and sometimes they do both. Part of sharing Caden with the world means embracing this natural reaction to help others understand. But then we move on. We focus on what we share in common and how we are alike. We learn from the differences but we revel in our similarities. Then it's easy to be in a happy place and squeal together.

Friday, August 7, 2015

First guest blog post!

This is exciting news! I had the honor to write a guest blog post for Children's Miracle Network Hospitals regarding the Champions tour. My first guest blog post! It is still very difficult for me to put into words what this experience was like and what it meant. My standard response, even now, is to well up. I'm so glad we get to do Take Two in February to reunite our "family" and to give me another opportunity to fully take it in.

Tuesday, June 16, 2015

Though they be but little...

...they are mighty CHAMPIONS!

Here are some of the many inspiring children and their families that we met during our time in Atlanta and DC. These are undoubtedly some of the finest human beings you could ever meet in a lifetime and to be in their collective presence was deeply humbling. To learn more about their medical journeys, please visit the Children's Miracle Network Hospitals website and read about the Champion from each state. I adore each of these children and know you will too. I hope Caden has lifelong friends in this exceptional group.

Friday, June 12, 2015

Champion Tour Day Five: Washington, DC

We were invited to participate in  a media satellite tour this morning with Miss America at the National Press Club so we had to be up early AND functioning for interviews. Tough task but nothing a lot of caffeine couldn't remedy.

It was so fascinating to be in that building and see pictures on the walls of famous people who had been in the exact same location over the years. It is also interesting to see how satellite interviews are actually performed, not being able to see the person speaking to you while hearing them in your earpiece and still smiling into the camera. Very other worldly. That Miss America though! She sat through each interview (we're talking hours of TV and radio interviews from all over the country) and managed to be beautiful, eloquent and fresh for each one. I really don't know how she pulled it off.

We had two live TV interviews and one pretaped radio interview. Caden decided to get more energetic with each one. He also saw some of the teenaged Champions doing their interviews without their parents so after our first interview, he was already asking me to stay in the waiting area. It wasn't so much that he wanted to speak independently to the media but that he was jealous the other kids were getting alone time with Miss America - his "princess"! When we were finished with our interviews and ready to leave we said our goodbyes to the remaining Champion families. Caden then realized he didn't have a proper goodbye with Miss America but she was still taping interviews. He tried to storm the studio and was heartbroken that we wouldn't let him in. I didn't have the heart to tell him that there will be a different Miss America when we travel to Disney in February. Kira stole his little heart! Click below to watch one of the TV interviews with a local channel from our area, WGAL:
TV interview with WGAL

The other families and Champions were absolutely wonderful to watch during their interviews. We were able to view their tapings from a waiting area. Everyone was so supportive of each other and when someone would return from their interview back to the rest of us, they were greeted with applause, high fives, and praise. I have a hard time putting into words the awe and bond I feel for all of them. It is a unique group to have this shared experience with our children though our stories are all so different. It was a privilege to be in such company all week. I learned so much from their willingness to share their stories and open hearts. It brings tears to my eyes thinking about how touching this whole week was. February can't come soon enough!

We had a driver service deliver us back to Pennsylvania. Caden started out excited to be headed home to his Wii U games but then quickly crashed. He gave it everything he had these past few days!  Is he dreaming about this over-the-top week he just had or the one coming up in Disney? Or Miss America? All we know for sure is that his Chico's Miracle Bear is also comfy under the head.

Champion Tour Day Four: Washington, DC

Hmm, we have some free time today. What should we do after admiring the Washington Monument from our hotel window? Oh yes, we must do a photo shoot first! Cheeeeeese!

And then head to the National Air and Space Museum. Caden has recently been fascinated with the planets and outer space so this was a must-do. We never made it to the "air" side of the building and spent all of our time pretending to be astronauts on the "space" side. 

That evening the Champions were treated to an amazing red carpet private movie screening of Rio 2. The entrance to the movie area was set up like a Hollywood premiere draped in fabric and bordered by velvet rope. Inside there were concession areas, fancy seats and an area for kids to lay down and watch the movie with blankets and pillows. And lots of stuffed animals! I could hardly believe how much effort went into making this the best movie night ever. 

Yep, that's Caden up front turning around to check on mommy and daddy. For most, this was their last event of the Champions tour so there were many goodbyes. We were invited with a few other families to participate in a satellite media tour the next morning so fortunately we didn't have to say goodbye to everyone just yet. I can't believe how close we've all become so quickly. There were lots of shared happy tears during the week and lots of sad tears as we departed each other's company. At least for now, it's merely an "until next time" when we will all be reunited in Florida in February 2016. We were honored to become friends with such incredible families and will truly miss them.

Thursday, June 11, 2015

Champion Tour Day Three: Washington, DC

Here we are halfway through the trip and I still can't grasp that it is really happening! Being around these amazing Champion children is so inspirational. They are full of light and life which makes it hard to reconcile that happy image with their medical histories, knowing the dark and emotional journeys from which they've traveled.  It's also an unique experience to have this immediate bonding with the families because no matter the medical journey, whether it was due to a congenital or acquired condition, an accident or an illness, we've shared those feelings of helplessness and the instant change in your life perspective when your child's health or even very life is on the line. No other roomful of strangers could connect like this. It certainly makes it difficult for me to keep my eyes dry this week!

So today we stormed Capitol Hill and took our message of awareness for Children's Miracle Network Hospitals directly to the decision makers of our country.

Caden is easy to spot in the group photo of all the state Champions. He's the one with the celebratory fist in the air. Because of course.

Caden had a lot of hugs for Miss America the past couple days. He even made her Instagram account where she declared him the best hug giver in all the land. She oughta know!

We then attended a luncheon with an incredible view over the DC skyline hosted by Senator Orrin Hatch. We were hoping for a tour of the White House but unfortunately it was not possible. And even if we had been there, the visit would've been canceled or interrupted because it was a crazy day for security with multiple bomb threats and evacuations! Instead we stayed at the Capitol Building and visited the offices of our Pennsylvania Senators. They were tied up in meetings but it was fun to make an appearance and sign the guest register. When they review that, they will feel sorry to have missed a chance to meet "Caden Hulk"!

There was one moment of panic today.  I wanted to get pictures of Caden on the steps of the Capitol so I asked him to go up a few while I crossed the plaza area to get the whole building in the shot. Suddenly a security officer of some sort holding a RIFLE stepped onto the terrace over Caden. And a bike cop rolled up to Caden on the steps and handed him a paper. What was happening? I dashed back to my boy thinking he was getting arrested! Maybe given the bomb threats, we weren't supposed to be standing on the steps. But it turned out that the bike cop was making Caden a junior officer and put a sticker badge on him. The armed dude was keeping an eye on us, however. You can see him in the background here. That wasn't unsettling at all. .

We finished the day at the White House. Even if we couldn't get inside, we at least wanted to see it. However, security was still on high alert and we were turned away from the area several times before we finally made it. Caden wanted to climb the fence. I almost let him.

The Pennsylvania Champion was proud to represent on Pennsylvania Avenue! And taking his ambassador role seriously, Caden made sure to say hello to everyone we passed on the street which was a lot of people from all over the world. But he kept his spirits high and put smiles on a lot of faces. Spreading awareness while spreading joy. A perfect job for Caden!