Thursday, June 28, 2012

Retreat: Recharging our Batteries

Please welcome another post from guest blogger, Erica Mossholder


About this time right now, many CCA families are waking up in gorgeous Tempe, Arizona, and many others are headed that way in cars and on planes. I am so excited for all of my CCA friends, but I also have a sadness lurking inside me today. I was unable to attend this year and all week I've been bummed that I will miss out on the amazing weekend that is retreat. Sometimes schedules just don't work out and I understand that, so I'll try not to pout and simply explain how important retreat is for me, even though I'm not a "kid" (though my husband would probably beg to differ, haha) or a parent!

The thing that I will miss most about the CCA retreat is the overwhelming sense of belonging. I attended my first retreat only two years ago in Boston. From that first retreat to the second in Louisville, I went from coming in as a newcomer to returning as a much-missed relative. I had stayed connected on Facebook and through emails with the people I met in Boston and when I arrived in Louisville, those connections picked up right where they left off. I believe that is the case for so many of our families. 

Walking into the hotel ballrooms for breakfast during retreat is one of my favorite parts. It's like waking up and having breakfast with the biggest family I could ever imagine. I get to see cute sleepyheaded toddlers still curled up in their parents laps and boisterous little boys zooming in and out of tables, laughing in delight. There are teenage girls sitting around talking, texting and trading bracelets and high school secrets, and of course, there are plenty of parents chatting with one another over steaming mugs of coffee. The parents, though a little tired from fun in the sun and sightseeing, look so calm and happy that their children are playing with friends from across the country in a safe, welcoming atmosphere. The sense that we are a family and have a deep connection to one another is pervasive throughout the whole retreat, but perhaps it is best observed at those casual breakfasts (I would argue that it is best felt at the dinner dance, but that's another post entirely!). 

I love being a part of CCA because I know that our family cares for one another throughout the whole year and we get to recharge our batteries at retreat. I am sad that I have to go another year without linking up to the energy and positivity that is generated at our retreats, but I know my friends will share it online and in their communities when they return. It cannot be expressed in words, but yet I'll try again. The bonds formed at CCA retreats do more for me, my self esteem, my sense of purpose and my desire for belonging than almost anything I’ve experienced. One parent once said that attending retreat did more for her child's emotional needs than a year in therapy ... and I believe it! We're a family, a village and a network of people who believe in each other, our worth and our potential. 

To my retreat friends, I hope you have a wonderful time in Tempe and to other affected families and individuals who have never attended retreat, I urge you: Make it priority for Orlando 2013! I agree that is extremely hard to budget, plan, schedule and commit for a "vacation," but trust me: retreat is so much more than a vacation; for me and others at CCA, it's a family reunion and a integral life experience.

Sunday, June 24, 2012

I am Grateful for the Internet

Please welcome another post from Kerry Lynch and
the third blog in our "Grateful Sunday" series

In the first hours and days after Mary Cate was born the internet became my best friend and my worst enemy.

Google, wikipedia, webmd.. soooo much information to digest, information that I didn't "want" to know, I scoured the internet to find a website that said that Apert Syndrome would be cured after just a couple of surgeries and she would go on to live a happy and healthy life free from excessive medical care.  I still haven't found that,but I have also finally stopped looking.

Some of the information and pictures were way too much to handle in those early hours, but in an age of iPhones, the world is at our fingertips, and not easy to ignore.

That first night of her birth we wrote an email informing our family and friends about Mary Cate's diagnosis and what we were told to expect.  After I hit send, I looked at Chris and said "How the HECK did people do this 20+ years ago?????"  

We could not have imagined calling  people to explain it all.  We could barely utter the word Apert without turning into a sobbing mess.  How did people do this over and over again before internet and email.  This has been been our main mode of communication to friends, family, colleagues, neighbors and even strangers whom have been drawn to MC's story!

Since those early days, the internet has been a lifesaver.   Through it, we have been able to find the surgical team we will be using in Dallas, and the support networks of families with Apert Syndrome as well as other craniofacial syndromes.

We enjoyed a WONDERFUL afternoon yesterday with a few other Chicago area CCA gals (and their families)...all thanks to the internet! :)

Jessica - 8 - Crouzon Syndrome
Dominika - 6 - Apert Syndrome
Tinley - 2 - Apert Syndrome
Mary Cate - 6 months - Apert Syndrome

Thanks to wide web :)


Sunday, June 17, 2012

Grateful for Glasses

** Please welcome guest blogger Stephen Wright. **

Stephen is 43 years old and works in San Francisco at Wells Fargo Bank. He is a graduate of San Francisco State University where he completed an MBA. Stephen is a published writer with two articles published in PARADE magazine  (including interviews with Cher and the late Dr. Paul Tessier.) He has also been featured in a Canadian magazine about craniofacial issues. He has 22 nieces and nephews and one great nephew (all scattered throughout the United States)
Stephen has Crouzon’s Syndrome and has been affiliated with CCA since 1990 and was serving on the board of CCA from 2003 until 2011.  He has had 23 surgeries which includes complete reconstruction of the face as well as skull restructuring.

Do you remember in the movie Dumbo where the little mouse enables the elephant to fly by telling him of the powers of the magic feather? Well in my case the feather was a pair of glasses which my parents got for me when I was eight years old.

Apparently there was a lot of discussion by my parents as to how sound of an idea it was to enable me to “hide” from the world behind glasses.

My father thought that since I would have Crouzon's my entire life, I should have to deal with the world as it was and not try to “hide” away from it. My mother disagreed and thought the cosmetics would enable me to function better in the world.

When the eye doctor pointed out that my eyes were vulnerable to being damaged physically by the wind or being hit, the discussion was over.

I tested them out immediately by walking down to the corner drugstore to buy some sandwiches. I took a deep breath outside the entrance and stepped inside. The thing I noticed was that no one stared at me. They worked!

I proudly walked into the third grade with my new glasses. What for most kids would have been a stigma for me became a life line. The perception that the glasses changed my appearance enabled me to function much better socially. I wore those glasses until I was 20 and they served me well.

Sunday, June 10, 2012

This Sunday I'm Grateful for...

"This is the second post  in our "Grateful Sunday" series.
In addition to reading our posts here on the blog, 
follow CCAKids on Twitter and Like CCA on Facebook 
where we will be posting things we are grateful for every Sunday. 
We would love for you to participate!  
Use the hashtag #GratefulSunday **

A few weeks ago Peter had a follow up appointment with his craniofacial surgeon.  The surgeon performed her annual exam, looked at me, and said, “I wouldn’t touch him until he’s 16 and needs a final jaw surgery.”  “Really,” I said?  “Unless, he is unhappy with his appearance and wants something done sooner” was her reply.  She recommended that we consult with Peter’s oral surgeon who, she said, will be the specialist to perform his final jaw distraction/placement.  We haven’t had that appointment yet, but I’m still shaking my head in disbelief.

I guess this next major surgery has been hanging over our heads for so many years, that I’ve just learned to live with the possibility and not dwell on when it will actually happen.  When Peter was 2-3 years old, he had the rib bone graft to his mandible followed by jaw distraction.  The distraction left as many permanent scars on me as it did on Peter.  It was, by far, the worst of his surgeries.  After two weeks of turning the pins three times a day with Peter screaming his head off every time, we ended up back in the hospital due to an infection from the appliance.  That was followed by a week-long stay and discharge with a PICC line for continued I.V. antibiotics at home.  Most patients don’t have such complications from jaw distraction, but, unfortunately, Peter did.  The positive outcome from the surgery is that he was decannulated (trach removed) about six months after the distraction.  The negative is that over seven years later he still has an open stoma (too long of a story for this blog post).

Peter is now 11 and 16 is really not far off, especially when I think of how quickly time is passing.  It seems like just last week I was sitting outside the door of his preschool not leaving for fear that his trach would need suctioned and the staff would not know how to handle it.  We’ve both come a long way from those days; me on learning to trust and let him go and him on becoming more independent and learning responsibility.  As Peter makes the transition to middle school this fall, we will both have to continue growing in those capacities.  This Sunday I’m grateful for Peter’s capable surgeons and wonderful teachers who have influenced our lives in so many positive ways.

Have a safe and happy summer everyone!

Friday, June 8, 2012

Dad of the Year...

Please welcome guest blogger Kerry Lynch...

Hi, my name is Kerry Lynch, and my daughter, Mary Catherine was born on 12/08/2011 with Apert Syndrome.  We had no knowledge of this prior to her birth, so were shell shocked when she arrived.  We quickly adjusted to our new life as parents of a "special baby".  Research, doctors appointments, tests, travels, fears, anxiety, support, love, etc!  It sure has been a wild ride, and I'm sure it will continue to be. We are still newbies to the Apert world, but we are incredibly grateful for the support of the CCA family as well as the other families we have met through the CCA.  Mary Cate is scheduled to undergo her first finger/toe release in August, and we will see where the surgery schedule goes from there!  Please feel free to check out our website at to learn more about our little lady.

With Fathers Day quickly approaching, I would like to give a shout out to the father's of our amazing CCA kiddos, and especially to my husband Chris!

I have to admit, I was a bit nervous that Chris was going to have a hard time "growing up" and being a father.  He has always loved adventures: rugby, wrestling, rock climbing, mountain climbing, Go Ruck challenge (if you are wondering what this can google it), etc.  He is the definition of a "guy's guy".  During my pregnancy he spoke pretty openly about how terrified he was to have a daughter, and how he was already looking at youth rugby programs for when our little man arrived.  With the male dominance on the "Lynch" side, I kept telling him not to worry about it...this baby would definitely be a boy!  

Well.........our baby arrived and not only did we get the shock that she was a SHE, but we also got the shocking diagnosis of Apert Syndrome.  Chris was instantly thrown into, not only the role of father to a daughter, but a special daughter at that!

I remember seeing his tears and the fear in his eyes during those first hours and days after her birth, and I worried that my crazy, fun-loving, hilarious, adventurous husband was "gone".  Thankfully that lasted no more than 48 hours, and he was back to his old ways...times ten!  In our 12+ years together, I have never seen this guy smile and laugh as much as he does when he sees or speaks or even thinks of Mary Cate!

In the last six months Chris has blown me away with his amazing fathering skills, and Mary Cate absolutely adores him!  I am so grateful to have married such a fantastic man.  Mary Cate is the luckiest little girl to have him for a father.  (I promise Mary Cate, I will work hard to get my way and have you be an Irish Dancer, but I am pretty sure your dad already has you signed up for rugby in a couple of years!)

I recently got back from a weekend away with my girlfriends, and, not only did Chris do a fabulous job taking care of Mary Cate's every need, he never had to call to ask for help.  He also enjoyed every minute (OK, almost every minute-- maybe not the ones from 2-5 a.m. while she wanted to play).  I got to enjoy myself and not worry too much about how they were doing back home!

I even awoke Sunday morning to this great video!  You better believe that after watching this I couldn't have gotten home quicker to my loves, and, upon getting home, I found at least 5 more of these music videos on the laptop!

Thanks Chris for all you do for your girls...We LOVE you so much, and hope this year is the BEST FATHER'S DAY ever!  xxox

 Please tell us about your awesome CCA Father! 

Sunday, June 3, 2012

I'm grateful for...being wrong

** This week kicks off our new "Grateful Sunday" series.
In addition to reading our posts here on the blog,
follow CCAKids on Twitter and Like CCA on Facebook
where we will be posting things we are grateful for every Sunday. 
We would love for you to participate!  
Use the hashtag #GratefulSunday **


When Aiden came into our lives we loved him - no doubt - but we worried.

Our role as a mother and a father changed dramatically. It became a little less carefree and a little more complicated. The road appeared long and narrow and we had no idea where it would lead us. Inevitably, we feared the worst...only to be proven wrong.

With Mother's Day just behind us and Father's Day around the corner, I am proud to celebrate the many ways that Aiden has changed our perspective as parents.

I am grateful that our road, while bumpy, is not a scary path into the unknown but rather an amazing ride filled with accomplishments and proud moments that I would not have experienced if it weren't for the life we were blessed with.

Let me explain...

When Aiden was born,
we worried A LOT.

We worried that he would never learn
to sit, stand or walk...
...We were wrong.

We worried that he wouldn't be able to use
his tightly fisted little hands...
...We were wrong.

We worried that we wouldn't find the best team
of doctors to give him 10 fingers and 10 toes...
...We were wrong.

We worried that the many surgeries
would break his spirit...
...We were wrong.

We worried that the relationship with his brother
would suffer because of his differences...
...We were wrong.

We worried that Aiden would have a hard time
in school or that he wouldn't make friends easily...
...We were wrong.

We worried he wouldn't be able to perform
simple tasks like cut with scissors or use a fork...
...We were wrong.

We worried he wouldn't be
able to play sports...
...We were wrong.

We worried he wouldn't be happy...
...We were wrong.

We worried WE wouldn't be happy.

Thank you Aiden...
for proving us wrong
time and time again!