First of all, I got to meet Scott Guzzo. Scott is a 26-year-old young man who was born with Crane-Heiss syndrome. Being one of only 2 living people with this particular craniofacial condition, I'm sure you can understand just how special it was to meet him in person. To talk to him. Listen to him converse with us (although mostly I needed to defer to his parents to "interpret" what he was saying). Scott has multiple disabilities that keep him confined to a wheelchair and require feeding through a G-tube. But, at the same time, Scott is vivacious. He is capable. He is intelligent.
My friend Audrey and I spent an afternoon with Scott and his parents at their home. Over a lunch of homemade chicken salad and crunchy potato chips I was able to see first hand that life as I know it may be changed or may be "off course" from the life that had envisioned, but it certainly is no less amazing.
Paula, Scott's mom, is a parent advocate, an outspoken individual and a member on Children's Craniofacial Association's board. She is going to be the keynote speaker at Little Fire Big Heart and I am so looking forward to having her share her perspective with our audience. As craniofacial conditions go, I am, in fact, the rookie, she is the expert.
I've also recently completed two books (gasp! time to read? I know, right) that have offered very different views on grief, loss, and survival.
Josie's Story by Sorrel King is about a little girl who lost her life at the hands of the very capable, very respected staff at Johns Hopkins Hospital due to a medical error. A lethal dose of methadone was delivered during Josie's recovery from a bathtub accident at home. Sorrel tells this heartwrenching story about the loss of her daughter - unselfishly including insight into her darkest moments of guilt and "should-have-dones" - then transforms the piece and shines light on the good that ultimately happens as a result of the tragedy. She becomes an advocate, working tirelessly to support and invent ways to improve education in the medical field about the importance of parent/doctor communication and preventing medical errors.
The other book was called The Middle Place by Kelly Corrigan. It is a memoir written about the author's experience being diagnosed with (and surviving) breast cancer. She has a very poignant voice and as foreign as the world of cancer is to me it still resonated with me in so many ways. The shock of finding a lump paralelled the shock of learning about Aiden's diagnosis. The feelings of isolation. The resistance to accept, move forward, educate and fight. And then, the desire to do just that.
If there is one thing I've come to understand over the past few months, it is that unfortunately, everyone has their own battles they are fighting. Scott will never know a life of being able to run a race or savor a sliver of steak. Sorrel King will constantly grieve the loss of a child. She will think about the moments they should have shared. Kelly Corrigan will wonder why her body failed her. Fear the day that the cancer will creep back in and threaten her very existence.
I may not ever know their pains. I may not ever fully comprehend the journeys they have lived. Yet, at the same time, I feel a connection with each and every one of them.
The details, the story, the unique responsibility of raising a child with Apert Syndrome, the dealing, the surviving - that is our own. But the feelings of the heart, those are one in the same.
Today was a beautiful day for Ethan's very first soccer game. Ricky and I have been practicing with him at home for a few weeks, hoping to give him some clue as to how to play the game. It's clear that the boy has skills - he can kick, he can run, he can shoot the ball between two strategically placed orange cones. But throw in a dozen other bodies running about, all who have also learned to kick the ball without other legs racing in from all different directions, and all hell breaks loose.
Ethan just didn't get it. Every time he kicked the ball, he'd stop, give me a HUGE smile, then turn around and lose it when in that split second someone "stole" it from him. And no matter how many times you tell a kid not to touch a ball with their hands, well, that just doesn't make sense to them, so there were tears, stepped on fingers, nose-dives into the dirt, you name it. It looked more like a game of rugby than soccer. (Although I've never seen a game of rugby that included periodic trips on and off the field so that mommies could kiss boo-boos or kids had to "go pee-pee, like, NOW".)
Just in case Ethan ever doubts the mess that was his first attempt at sports, and just in case we ever want a good laugh and a glimpse at our beautiful 3 year old boy in all his soccer glory, we got it all on tape. :)
Thanks Nana, Lilly, Andy, Grandma and Paw-Paw for coming to Ethan's first game!
Click here to see more pictures.
What a beautiful day we had to celebrate the rising of Jesus Christ. The boys of course don't get it yet, but we hope to continue to teach them the true meaning of observing holidays like Easter and Christmas.
To them it was about the big fluffy white Easter bunny hopping into their house (or in this case, Nana and Grandpa's house, where we spent Easter this year) and leaving them baskets full of goodies and candy.
After mass, we headed out to Easter brunch at a local hotel. It was sunny and warm...perfect for our Easter egg hunt outside. The entire family was there - I felt so blessed to have us all together to enjoy eachother's company and let the kids play before heading back home to Indiana.
For more Easter pics, click here.
Then I couldn't stop thinking about the opportunity for our family. And Ricky, unbeknownst to me, couldn't stop thinking about how it might be good for his career at Samtec. A couple days later one of us brought it up again, this time posing it as a more serious question worth some consideration. We were both surprised that the other had even given it any more thought.
One thing led to another and before we knew it, Ricky had thrown his hat into the ring for the position and the two of us were on our way to Austin. We spent a week in the beautiful Texas city - Ricky went on sales calls with another Samtec FAE in Austin while I looked at houses with his wife who happens to be a realtor. Throughout the week, we were given a great tour of the city, the neighborhoods and beautiful dining spots overlooking Lake Travis. Ricky got a better feel for what his role would entail if he switched gears from being in the corporate office in New Albany. By the end of the week, we were pretty surprised once again that both of us were about 95% in favor of making the move.
Upon returning home, Ricky went back into work and gave Samtec his decision. We decided as a family that we were ready to do this. We are moving to Austin!
This won't be a permanent move - somewhere between 3-6 years - and it is a decision that Samtec fully supports is a good move for Ricky's career. Right now it looks like we will not head down there until the fall which works out great so that I can continue to plan Little Fire Big Heart locally - regardless, the event will still go on as planned no matter what our timeframe for the move ends up being.
It will obviously be very hard to leave our family and friends back in Indiana and Kentucky, but I think we've come to the conclusion that this will be a great opportunity for our family to travel to a new place and meet new people. We already have a few acquaintances in and around Austin that will help us feel at home. Another huge plus is the fact that we will be just 3 hours south of Dallas where Aiden's specialists are at Medical City.
So there you have it! I haven't been able to talk about it during the decision making process until we had 100% confirmed we were going to go. It feels great to get it out there finally!
Some people said I was crazy for taking on a project this large - right when we were finally looking at some surgery-free down time - but to me, this whole idea has been about more than just giving back to CCA. Quite honestly, all of the planning, phone calls, meetings, brainstorming and time spent developing this event has been a very positive outlet for me.
After Aiden was born, I can remember being at the hospital, my mind swirling with emotion, and having a hard time figuring out what foot to put in front of the other. There were so many unanswered (and unanswerable) questions. So much to think about. So much thrust onto our plate without having a choice or a clue as to how to handle it. There was talk of surgeries, appointment after appointment with specialist after specialist, therapies, disability health insurance - really mind-boggling stuff. I needed to be sure I could take charge of the situation and that meant leaving my job, which I loved, so I could focus on my newly appointed role as Aiden's mom. My employer, my boss and my co-workers were all very supportive and knew that home was where I needed to be.
As my career in marketing ended, my life as a full-time stay at home mom began. I always dreamed about having the opportunity to stay home with my family, I just never thought it would be more out of necessity rather than a choice. At the time it didn't phase me - I was doing what needed to be done. I grabbed the bull by the horns and worked tirelessly to make sure I was not leaving any stone unturned. I took my newfound role very seriously to say the least. Sometimes I had to remind myself to just stop and enjoy being a mom, and not just look at every day as another day on the job.
We made it through the first year and a half - surgeries, therapies, milestones and all - and life started to become more predictable. More routine. I no longer had to focus my energy on coordinating Aiden's care. Bills got paid and doctor visits were stretched farther and farther apart. Stress gradually diminished. And suddenly I found myself antsy.
I had become so good at what I was doing - managing schedules, discussing treatments with medical professionals, making follow-up phone calls, all while wiping bottoms and doing laundry. I had the multi-tasking thing down pat. So when it was time to sit down, take a deep breath and RELAX, I just couldn't do it.
My mind had shifted from defense to offense. I had the opportunity to start thinking proactively rather than reactively. And so the spark for doing something for CCA was lit. A few friends and family members and I got together to talk about what we could do, and Little Fire Big Heart was born.
With many hours of work going into this event it really has become my new "job". It allows me to think creatively, set and work towards a goal, utilize skills that I loved to showcase in my short-lived career in the corporate world, get out of the house to meet people and converse about things other than Winnie the Pooh or peanut butter and jelly, and, best of all, I still get to kiss the boo-boos, snuggle with the boys on the couch in between emails and stay in my pajamas if I so choose. I'm my own boss and I love it.
So while I am definitely enjoying the surgery-free downtime, clearly I need to work. It helps me feel useful. It helps me feel like I am making a small imprint in the world. And sometimes it refocuses my energy from the doubts, the fears, the worry that can creep up without warning into something more positive and productive. It's a win-win.
As the months go by and Little Fire Big Heart takes shape I am continually amazed by the support I have received along the way. I'm so excited to see all of the hard work materialize on September 25th. Thanks so much for the people near and far that have come together to make it happen. And for understanding that adding more things to my plate is just something I'm used to now. Knowing I have people there to help bail me out if I need it is one reason I'm able to keep pushing forward through it all. ;)
PS - Don't forget to register for tickets. There are only 150 of the 250 tickets remaining!
Visit www.littlefirebigheart.com to learn more.