CCA Spotlight: Roberts Family Update

Delaney Roberts was born in August of 2004. She was born with CranioFacial Dysplasia with Cleft Lip/Palate. She also had a hole in her diaphragm called a diaphragmatic Hernia. Her hernia was repaired when she was about 26 hours old and would be the first surgery of many.  Delaney will be having another surgery about the time she graduates this June from the 6th grade. She was hoping to have her braces off her teeth this past Halloween, but the bone graft she had done last year did not take and is the reason for the scheduled surgery.

Delaney loves to “FaceTime” with her best friend, who lives out of state and you will rarely find her without her beloved iPod. Her favorite artists are Rascal Flatts and Taylor Swift. She just started Upward Basketball for her second season. She loves working in the mornings at school as a Safety Patrol Member and was excited to be picked to be 1 of 15 classmates out of  50 total patrol students from her school to walk in the Starlight Holiday Parade. She also recently receive a Tiger Award at her school for “Being a good Math Participant.”

She loves her little sister, Kendall, who was born in October of 2008. Kendall is in the 1^st grade and loves to steal hugs from her big sister, which Delaney says is “totally annoying,” but what little sister isn’t at 7 years old?  Kendall is trying out her first season of Upward Cheer and hopes to be able to cheer at one of her sisters basketball games this season.  When cheer/basketball is over she wishes to go back to taking ice skating lessons or gymnastics. She loves to collect Shopkins and play Animal Crossing with her sister on her Nintendo. 

Delaney and Kendall have attended two CCA retreats and hope to go to more. They have both really enjoyed meeting new friends and making memories of the fun at retreat!

Hopefully, the girls will get to attend more Retreats in the future, but unfortunately they'll have to miss the 2016 Retreat because Delaney is having a surgery this summer. Good luck, Delaney, we will miss you and we will be thinking of you both! 

CCA Family Update: The Morris Family

Morris Family Update: March 2016

The Morris family is our second family to be featured on our monthly e-newsletter feature. We love this crew and we're so glad they got to enjoy the 2015 Retreat with all of us! Read on for more about what they've been up to since then...

Brockman is now 11 and in 6^th grade. He is enjoying his last year in elementary school! He absolutely loves to read books and along with that he is now writing! He posts his stories on Wattpad, an online site that young aspiring authors can share their work! 

He played football again this year: nose guard as well as on the offensive line. He loves to sack the QB and had some nice sacks this season! Roosevelt finished 2^nd in their division! He also is wrestling Varsity with a record of 4-0. He played for the Junior Giants over the summer, and is going to try his hand at baseball in the Spring. 

He continued in band, however, he switched instruments. After 2 years of playing Trumpet, he chose the Baritone. He toured his future Jr. High School (middle school) and found he is interested in Theater! He was cast as “Head Guard" in the play Shrek. He also is in the “Mighty Milers Club” at school and he has walked/run 6 miles to date. He made Honor Roll and is becoming a wonderful young man! 

Bastian is now 10 and in 5^th grade. He joined his brother and played football this season He played special teams (kick off) and recovered a couple of fumbles as well as played a bit of defense. He is wrestling and is improving with more mat time! He played for the Junior Giants and loved playing Catcher with more practice he really could be great! 

He continued in band this year playing the Alto Saxophone. He was picked for a special blended class this year, combining 4^th  and 5^th grade. They needed children that were helpful, who work independently and are self motivated. We are proud that he was chosen and Bastian has proven to be a wonderful student, friend, and just an all around great kid! 

He also enjoys acting and performed as Pinocchio in Shrek! He is on Honor Roll and had many lunches with his teacher for his accomplishments. He is working on a cartoon script called “The Morris's” where he chronicles our daily events and hopes to make people laugh with his writing and drawing. Watch out, we may be the next Simpsons..... 

Breeanne  turned 9 this year and is in the 4^th grade. She participated in Cross Country and finished 32^nd out of 100 in District Championships! Academically, she has had a 4.0 for the past 2 years, and is very creative artistically, so she will be tested for the GATE program this coming year. 

Dr. Gupta, her neurosurgeon, told her she could play softball in the Spring - and she is so very excited!  She is a Junior Girl Scout. She really branched out this past year and went door to door selling cookies, as well as sold them in front of a few grocery stores. She wore her Passy Muir Valve and her speech was so clear that she even had a couple of people just donate money to her troop! I was so proud of her since we know how hard it is to overcome some of the social and medical challenges that she faces. 

She played in the band this year, with her brothers. She originally tried the flute, but unfortunately she could not push the air due to her cranial abnormality, so instead she tried her hand playing the bells, which looks like the Xylophone. She had her first solo in the Winter Concert and did amazingly; she really nailed it! 

She had heart surgery last June, plugging PDA, which went well with no complications. This May, she will be having her  Mid-face Advancement/RED. We will be posting the progress on Facebook for whoever would like  to share  this process with her and us. Friend request us @Kirsten Castillo Christian Morris.

We continued our tradition and went to Santa Cruz/Monterey over spring break and to Lake Tahoe in September. We attended our 1^st CCA Retreat held in Newport Beach last June. We met some amazing people, attended wonderful symposiums and had a great time at all the events that CCA provided the families. I would 100% recommend attending Retreat to anyone who has the chance! My children were so happy and carefree during their time at the retreat.

Thank you to the Morris family for sharing their update with us!

Mom to Mom: A Hug in the Parking Lot

We found this post in one of the craniosynostosis groups on Facebook, and graciously, the author, Xanthe Faulkner, agreed to let me share it on our blog. I believe it's a succinct and beautiful peek into the lives our amazing cranio moms and dads, and a great example of why family networking is so critically important and part of the work we do at CCA Kids. 

***

Why we cranio families are who we are (long!):

So Helmetbaby here is in daycare. And the day he started, 4 months ago, I looked at a boy in his class and thought "Saggital. For sure." But you know how it is - I never crossed paths with his parents, don't know the family, maybe he's already being followed, etc... But we're very public about our son's journey, so all the staff know us and the details of our little guy's condition and journey.

So this morning I was carrying my son across the parking lot towards the school. And a woman I don't know calls to me, softly, and comes over. "I need to talk to you," she falters, "I'm so happy you came just now. The teachers said I should, that I could..." And tears well up in her eyes, and I knew right away. With my son cradled in one arm I wrapped my other arm around this stranger and held her tightly. Of course she was the other little boy's mom, and she had gotten CT confirmation of fused saggital and metopic the day before. "I'm so upset," she said, soft spoken and shocked, "I never expected. I'm beside myself. I forgot all my groceries in the store yesterday. I'm so distracted and scared, I don't know what to do."

She doesn't have Facebook to get support from you all, she hasn't even met with a neuro yet, but I gave her my number. We'll have coffee. I told her my son was fine, more than fine, and that while it had been scary, the results were fantastic. That everything will be okay. And guys, I felt so clearly... That we as cranio parents are the only ones that get it. The sudden fear of realizing they will have to cut your child's skull open and piece it back together. The terror of things going wrong. Worries about their little growing brains. The unknown. And I thought about how people who understand first hand are the only ones who seem to bring any comfort sometimes. You can't fake having been there. And once you've been there, you are driven to reach out to others standing in the new fear,

To hug them in the parking lot,

To whisper,

"I know."

Thank you all for being that for me and so many other families. 

Thank you for teaching me how to be that for others. XO.

-Xanthe Alyse Chefurka Faulkner

Brown Family Blogging

Today we have a post from one of our family bloggers, Lisa Brown. Welcome to the blog, Browns!

Hello from Texas.....we are the Brown family.  My name is Lisa and my husband is Steve, and our two boys from left to right are Landon (8), and Logan 12. 

Logan was born with Apert Syndrome on January 18, 2002 at Harris Methodist Hospital in Fort Worth, Texas, and also has a diagnosis of ADHD.  We are very fortunate to be close to our craniofacial team here in Dallas, as it is only about a 2 hour drive for us.  We live in Weatherford, Texas, which is just outside the metroplex of Fort Worth, and enjoy living in the "country."  I have been a special education teacher for 12 years, and my husband was a former teacher/coach, but now works for the railroad at BNSF as a dispatcher.

Logan has had a total of 11 surgeries - 5 of them were cranial vaults, 2 syndactyly releases, LeFort III (mid-face advancement - attach and removal), arterial tear coil clamp, and a palletal fistula repair. Our next adventure will most likely be orthodontia.  Oral appliances, braces, etc...here we come!!

Logan loves to create and build things from Legos, without directions I might add, and he comes up with some pretty cool designs!   He also likes to play video games and drive his new go cart.  As a family, we enjoy being outdoors riding go carts, swimming, camping trips, going to the ballpark to watch the Texas Rangers baseball games, and watching movies together.

We are a very blessed family, and thank God everyday for the blessings He has given us, through the good times and the very tough times.

Logan has inspired us and taught us more things than I can even mention through his strength, courageousness, and perseverance.
I have recently entered into the world of "blogging," and find that it is a wonderful tool. It has helped, not only to share our story, but to connect with others and hope that families with children who have craniofacial differences can relate in some way, and feel that they are not alone.  It has taken me 12 years to get to this point, to reach out, and am so thankful that I have.  If you ever want to visit my blog, go to: onerealhero.blogspot.com, or it is also posted on the CCAKids Family Blogs under the Apert Syndrome link.
I am still an amateur at blogging, but would welcome feedback from experienced bloggers.

-Lisa

Media Monday: The Ewing Family

This Media Monday post comes from Goshen, Indiana. The Ewing family had a wonderful story published in their local news outlet, the Goshen News, spreading awareness and acceptance during Craniofacial Acceptance Month. Thank you Ewings! Your beautiful story encourages many who find strength and refuge in their strong faith.

Ben, Jeannie, Felicity, and Sarah Ewing

From the article:
It’s a different journey than that taken by other parents they know, as the Ewings’ days are consumed with doctor’s appointments, testing, dealing with social service agencies and trips to Riley Hospital for Children. All this provides a lesson in patience and humility, the couple said.

“We may do different things on weekends but the goal is the same — to have a closer family,” Ben said.

During this Craniofacial Acceptance Month and beyond, the couple most wants others to realize “the simplest thing — to look beyond our physical differences and look at the heart of a person. Every soul is unique with gifts and talents,” Ben said.

“Don’t be afraid or uncomfortable with someone who’s different. Make eye contact,” Jeannie urged. “Stop and see the person — the human within.”

- See more at: Goshen News Online

Welcome to the CCA Family, Sarah!

There are no Absolutes: How to Handle Bad News from the Doctor

Here's the second post in our "How Do You Handle Bad News from the Doctor?" series.

As parents of children with complex medical issues, we are no strangers to receiving bad news from doctors. Although we've never been dealt what I would consider devastating news, we have certainly received our share of difficult reports and diagnoses.  I still remember what the geneticist told my husband and I twelve years ago just days after Peter's birth.  He said, "This is not doom and gloom, but this is a very difficult road."  He was most certainly a very wise doctor!

The first life-shattering report we received came from the maternal-fetal specialist at my 20-week ultrasound.  That is when we were told that our baby had at least two significant birth defects related to his kidney and jaw.  The doctor's exact words were, "Where there is smoke, there is fire.  You may want to think about terminating your pregnancy."  As you would expect, we were heartbroken and terrified.  I couldn't sleep for days following the news and vividly remember sobbing alone in the middle of the night, grieving the loss of the child I had been expecting. 

What got me through the remainder of the pregnancy was a focused concentration on researching syndromes with jaw and kidney abnormalities.  Searching the Internet was my way of coping and preparing for the arrival of the unknown.  I reached out to several listserv groups that offered very useful advice.  For example, I learned a great deal about micrognathia (small jaw) and found that children with the condition often require tracheotomies to help them breathe.  Before Peter was even born, I was ready for the possibility that he may need a trach.

More importantly, I had quick and immediate access to a group of experienced parents that taught me how to care for him, knew what questions I needed to ask doctors, and gave me advice on how to deal with all the other baggage (insurance, therapy, medical equipment, and so on) that consumed our lives for several years.  To this day, I credit the support and knowledge received from these parents for helping our family survive the first years of Peter's care.  Although I've only met a few of the listserv members, I will forever be grateful to all of them for their encouragement and support.

You never forget where you were, what you were doing, and who you were with when you receive bad news from a doctor.  It's so traumatic that it's forever etched in your memories.  I can recall a doctor telling me that Peter would never chew food or even swallow water.  She told me this with absolute certainty, even though he was only six months old at the time.  What I remember from that appointment is leaving the hospital in tears of grief that eventually became tears of anger before I finished the one-hour drive home.  How dare she deliver such an absolute diagnosis before Peter even had a chance to try?!  From that point on, I became suspicious of any specialist that thought they possessed a crystal ball.  Once you have enough experience, you come to realize that medicine is, indeed, a practice.  The only real absolute is that there is none.

More recently, we encountered a doctor who told us with ridiculous certainty how Peter's life will unfold.  She emphasized all the things she believed him to be incapable of doing while providing almost no positives.  She was disrespectful to both Peter and us as his parents.  I was once again heart broken and grieving the visions I had of Peter's life.  Why, after so much experience, I chose to "buy into" what this doctor was selling is beyond me.  After getting my emotions back in check, I once again sought the solace of research and information.  I met with other specialists and received several other opinions.  They were all in conflict and disagreement with the initial report.  Having these other opinions reassures me that I'm not running from the problem or in denial.  It also means that we are not making life-altering decisions for Peter based on the recommendation of one so-called expert.

Medicine is called a practice for a reason; it's full of uncertainties.  As parents to these medically fragile children, the ultimate decisions regarding their care lies on our shoulders.  It is a huge responsibility, but we have tools that no expert will ever acquire.  We know our child better than anyone else, and we love our child more than anyone else.  Although it may sound insignificant when compared to a seasoned doctor's opinion, I have found it to be a reliable and trustworthy guide.

Friday Remix: The Dyson's Story

Today's Post is a "Friday Remix." Friday Remix is the day we repost favorite blogs, articles, and stories that we've collected and found applicable to our readers.

Deena Dyson describes her family's first experience at the Annual Retreat. Since the images are a bit small below, you can access a larger version of the story here.

Comfort Zone

We all have a ‘comfort zone’, a place where we feel secure, at ease, with no stress. Our comfort zone feels safe because it’s familiar; it’s what we’re used to. It’s reliable as well, because we know that the comfort zone never fails to make us feel better.

I get to enter my comfort zone once a year, at the end of June. What else could I be talking about but the annual CCA Cher’s Family Retreat? This is the place where I feel the safest, most loved and most accepted. These feelings will never change, no matter how old I get.

The comfort sets in when I arrive at the hotel where the retreat is held. I immediately become on the ‘lookout’ for other CCA families. This year, my mom and I landed in Arizona early, so I was on the ‘lookout’ for a few days! The excitement rises when I spot the first CCA family; I get the biggest smile on my face and say “look Mom! There’s so and so!” For some, it’s only been a year since we last saw each other, but since not everyone attends every retreat, then it can become years before we see each other again.

We all have that desire to ‘fit in’ and to be accepted. We strive to find our place in the world. I am so thankful to have that; a place where I feel confident and not scared to be myself. Having been born with a craniofacial syndrome, I constantly have to deal with judgement and stares from the public. It’s not easy to fit into a world where society is so focused on ‘outer beauty’ and having the ‘perfect image’. This is one of the reasons why the retreat is my comfort zone. For a few days, I have a chance to get away from the negativity and just feel comfortable in my own skin. When I’m with my CCA family, I just block out everyone else. For instance, in Arizona, when we were hanging out by the pool, I did not even look up once to see if anyone was staring at us, because frankly, I didn’t care. The retreat is my escape. I get to hang out with friends and just have fun, without worrying about anything else. 

This year was deemed as one of the BEST retreats ever and I could see why. Even on the first night, where we have an ‘ice cream social’, you could feel all the positive energy in the air. Everyone was talking up a storm, laughing and joining in on the activities. If an ‘outsider’ came in and saw us, they’d look and think that we’ve all been close friends for years, but in reality, we may have only just met for the first time! No matter what, we welcome everyone with open arms. I know how overwhelming it can be at the first retreat, therefore I always try my best to make new families feel at ease. 

Not only is this an annual retreat that happens every year, but also; a family reunion! I can hear people saying “but wait, they’re not your ‘actual’ family, so you can’t say it’s a family reunion". That’s where they’re wrong. I strongly believe that family does not only include ‘blood relatives’. There’s so much more to it than that. A family is based on unconditional love, support, and encouragement -which is exactly what I feel when I’m surrounded by my CCA friends. Every year at the dinner and dance, there’s always one very important song that plays; ‘We are family’, which couldn’t be more accurate. After studying Psychology of Music last semester, I could feel the power of this song bringing everyone together. We all sing it, loud and proud “we are family!”

The ‘dinner and dance’ has always been my favourite part of the retreat. We all have the biggest smiles on our faces while dancing away, without a care in the world. Sometimes I wish I could pause the time, so the night could last longer. This year, they played the song “Born this way” by Lady Gaga. I was with my friend Casey when it started playing and we instantly got on the dance floor. For anyone, this song has a lot of meaning, but in the CCA world... this song means everything to us. It’s the phrase we have used countless times growing up, answering to questions from strangers “I was born this way”. Therefore, I don’t have to tell you how amazing it felt to dance to that song at the retreat. Being with my CCA friends and singing “born this way” is a memory I’ll always cherish.

Once we’re in our ‘comfort zone’, it can be difficult to get out of it, which is why the ‘goodbye breakfast’ is always the most dreaded part of the retreat. No one likes goodbyes. Even though we’ve only spent a few days together, we have already become so emotionally attached. We form an unbreakable bond. The sense of security from this comfort zone is so powerful that when I got to the airport to return back home, I immediately felt out of my element. When I was waiting in line and noticed people staring at me, part of me wanted to jump back in my comfort zone. I actually found myself looking around, hoping to see a CCA friend nearby.

At the retreat this year, a very wise friend said “this is our normal”, meaning that everything we go through, is just a part of OUR life. All of our CCA families have been through similar surgeries and we’ve all faced criticism and judgement from the outside world. Does that mean our lives are worse? No. We may have to face difficult challenges, but that’s only one part of our lives. The other part is filled with love, happiness and moments of incredible achievement. What makes our CCA bond so strong is that we can all relate to each other. We don’t have to explain how we feel because the person we’re talking to has gone through the exact same thing. The retreat gives us a chance to all be ‘normal’ together, a chance to meet new people without the fear of rejection.  

Even though I can only physically be in this comfort zone once a year, I can feel it emotionally when I communicate with others online. The comfort zone doesn’t disappear just because the retreat ends. I have to take those feelings that I get during the retreat and keep them with me as I go off into the real world. The confidence that I feel when I’m surrounded by my CCA family, should also be there when I’m surrounded by strangers. It is easier said than done, but by taking one step at a time, I know I can gain that confidence to face the world and not feel afraid to be myself.

“Beyond the face is a heart” – Children’s Craniofacial Association

- Sabrina

Choices

Twelve years ago at my 20-week ultrasound, I was informed that my baby had at least two serious birth defects. The maternal-fetal specialist that delivered the news had no bedside manner and completely lacked compassion. His recommendation was that I terminate my pregnancy.  I walked out of his office that day and never saw him again.  

Eleven years ago, when Peter was only six months old, a developmental pediatrician informed me with absolute certainty that Peter would never eat, chew, or swallow.  She was 100% certain that she was right.  I never saw that pediatric specialist again.

A few months ago, I encountered yet another specialist with a crystal ball.  This Harvard-educated doctor had never met Peter until the day of his appointment but was apparently able to assess everything necessary to predict his entire future.  I will not be seeing her again.

Peter is followed by 8-10 pediatric specialists on a regular basis and has had appointments and evaluations with countless others.  The specialists that regularly care for Peter are the ones who never take away hope and never speak in absolutes.  They are the doctors and surgeons that treat me as an equal part of Peter's medical team, take the time to listen to my concerns, admit there are no certainties, and enjoy watching Peter grow and develop. Peter's team of specialists take pride in his accomplishments, value our family, and use their knowledge and expertise to open doors rather than close them.  The specialists that haven't lived up to these expectations are not part of Peter's medical team.

Sadly, fewer doctors are choosing to go into pediatric specialties.  This is creating longer wait times to secure an appointment and fewer choices for parents of kids with complex medical needs.  What if I had not been able to secure second, and in some cases third, opinions in the above scenarios?  Would Peter have even been born? Would I have invested the time in therapy that enabled him to learn to eat?  While access to care is paramount to Peter's survival, the ability to choose who provides his care is equally important.  No matter what the future of healthcare provides, I hope that parents of medically-challenged children retain this right to choose.

Happy New Year!

2013 promises to be an exciting year for CCA, starting with the launch of our all-new website at www.ccakids.org.  This new website will have frequently updated information and links, including connections to all of our social media outlets.

One of my favorite new sections is the “Choose Kind Wonder” page.  It includes a comprehensive list of links about the book, including many educational resources.  There is also a downloadable sheet for teachers with instructions on how their students can make a real-life connection to a CCA WonderKid or Sibling!

CCA’s current and past newsletters are available for download on the new website as well as our syndrome booklets, one-sheet overviews, and webinars.  You can also browse our CCA Web Store and check out several clearance items.  Most importantly, the “Donate Now” icon can’t be missed at the top of every page.  Making a contribution is the best way to endorse the new website and to show your support for our other programs and services.  CCA’s existence is 100% dependent on donations from individuals and corporations.

Outreach and support for our affected families remains the highest of our priorities.  For our CCA families, there is information about registering for the annual retreat, applying for financial assistance, family networking, and finding a qualified craniofacial center.  The “Help CCA” section is full of ideas and guidelines on how to host a fundraiser, examples of successful family fundraisers, and information about the “Retreat Reward Program”.  Resources about how to raise public awareness will be added as we expand the content.

The CCA Board and Staff look forward to serving our families in 2013.  Useful tools like www.ccakids.org and new programs like the CCA WonderKid project are sure to help us “Widen the Circle of Acceptance” and to fulfill or mission of empowering and giving hope to individuals and families affected by facial differences.

Dede Dankelson
CCA Board Chair

It Takes a Village

We often hear the term "It takes a village to raise a child".  These words have never rung more true than they have in the last 7.5 months.  In the early days after Mary Cate was born I remember the doctors asking me over and over how we were doing and how we would get through this??  I remember my first response was always ...

"We have the most amazing support network known to man, and THAT is how we will get through this".  We are blessed with an abundance of friends and family, but we are also very blessed to live in one of the most supportive communities on the planet!  People often ask how our family has taken so much in and taken it in stride, and, honestly, it has been with the support of all of YOU!

From day one I knew my next mission in life would be to raise and spread awareness of Apert Syndrome.  I knew my daughter had started her life with many obstacles to overcome, so why not make it easier for her?  Why not show her off?  Why not parade her around?  Why not make her life normal?  Why not educate myself, my family, friends, community and the world?  Why not let everyone fall in love with My Mary Cate and know who she is, so that as she lives her life everyone will already know that she is Mary Cate.  She has Apert Syndrome, she does look different, but she is still a beautiful, happy and sweet little girl!  The less questions for her as she grows up the easier it will be to live her life normally.

This is my passion, my job, and my number one love.  I want to share the wealth!  I wholeheartedly believe that people are inherently good, and that ignorance comes from lack of knowledge.  From logos, to campaigns, to ice cream socials, to bake sales, to bar crawls, to snow cone stands, to "Team MC bows"-- Love is all around us, and we hope all of you are fortunate enough to feel the same!

article from a campaign called "Changing the Face of Beauty".  This was featured in Chicago Special Parent magazine's Summer 2011 edition and was recently featured on Maria Shriver's blog.

We are rare.  CCA families are few and far between, but with supporting each other and helping spread the word we will take on the world and show the world the loves of our lives!

xo

Kerry

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 you...world wide web :)

xo 

 Kerry

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 www.mymarycate.org 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 is...you 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!

YouTube link to view video

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! 

My Story

This week marks the one year anniversary of my 40th birthday (wink, wink). I feel GREAT, more like my old self and less like the stranger that possessed my body and mind for the last decade. What happened you ask? It’s a long story, but I’ll try to give you the brief version starting with my 30th birthday.

That was the day I had an amniocentesis done after just finding out that “there is something wrong with the baby.” Then there was Peter’s complicated, traumatic, and two-month early birth that had me scared out of my wits. That was followed by his over three-month stay in NICU, which really was a cake walk compared to taking care of him at home his first year. There was also the constant fight with our state Medicaid as well as the management of Peter’s numerous clinic appointments and piles of paperwork. It was a very lonely time for me even though we had a constant stream of strangers (therapists, nurses, and social workers) in and out of our house. In the midst of surviving Peter’s first year, I was dealt another blow by the sudden and tragic death of my brother. I also had two very early miscarriages during that time—one at his funeral.

How can all this be happening to me I thought? How much can a person take? What ensued was a very long bout of guilt, grief, and depression. I rarely left the house, was in a constant state of fear with the responsibility of Peter’s care, and sometimes never even showered or dressed for the day. It’s really something that I can’t even describe.

I did gradually claw out of the darkness. I had to for Peter’s sake. We had big decisions to make about surgeries and specialists. Those 2-3 years flew by in a blur of accomplishing what had to be done for Peter. Then, just as I was thinking life was calming down a little, SURPRISE again! I was pregnant. At the earliest opportunity, I had a high-level ultrasound. Once that came back normal, I did get excited about welcoming another baby. Also, Peter had his trach removed about a week before Jacob was born. We had a MAJOR celebration over that milestone!!! Things were definitely looking up.

Jacob’s birth, when I was 34, was a great joy. For me, it was very healing compared to the trauma of Peter’s arrival. I (stupidly) thought taking care of this baby would be easy compared to what we went through with Peter. Boy was I wrong! It turns out that all babies are exhausting—even the so called “normal” ones. Who knew?! Jacob never slept more than a few hours at a time and was very colicky. Poor Peter endured countless hours of hearing his new brother scream his head off and take all the attention away from him.

I do recall good times and laughs during all those years, but they were definitely overshadowed with a lot of responsibility. I still remember the words of the geneticist who diagnosed Peter. He said, “This is not doom and gloom. But, this is a very rough road.” Life is challenging and messy. We aren’t given the luxury to choose our trials, but we do have the choice to grow and learn from those events.

I’ve never shared my full story, but I’m hoping that it gives support to other Mom’s like me. Nobody would ever choose to have their child go through as much pain as ours do. It is not your fault. Let me repeat that again, IT IS NOT YOUR FAULT that this happened. You will survive the many challenges of motherhood, and, eventually, you will emerge a wiser and more compassionate person. I hate to tempt fate too much, but I say bring it on world! I think us “special” Moms can handle just about anything—wrinkles and all.

Reaching Out

It's not everyday you meet someone with Apert Syndrome. In fact, it'll typically only be a once-a-year occurrence, that being the annual CCA Kids Family Retreat where scores of craniofacial families come together to hang out, share stories and enjoy a different city with new friends and old.

Recently, however, I stumbled across a family blog of a child with Aperts in our area. Every now and then I google "apert syndrome" to see what new information comes up - research, new medical information, families. When I found this family's blog, I realized that not only were they in my area, they were actually staying at the local Children's hospital recovering from a recent surgery. I immediately wanted to reach out to them.

I found the mother's email address on the blog and shot her a quick note. Realizing it might seem like spam to get a random email from an unfamiliar email address, I was sure to put "mom of boy with Apert Syndrome" in the subject like to catch  her attention. We exchanged a few emails, then phone calls, then made plans to meet at the hospital. I couldn't wait!

When we arrived at the hospital, we met this sweet little boy who was full of life. Even after undergoing a critical head surgery, and while dragging an antibiotic IV bag, he shuffled around his room from toy to toy as if nothing was wrong. Once again a testament to the resilience of children.

After chatting a bit about his surgery, I asked the mom how many other families she had met that had kids with craniofacial conditions. Her son had recently turned 2, so I assumed she had probably had contact with many others, just as we had at that point in Aiden's life. I was completely stunned when she told me I was the first and only.

She seemed to have a very good handle on all things related to her son's medical care, and having met her mom and best friend while at the hospital, I knew she had a lot of support nearby, but I was still surprised that 2 years into her son's journey she had never had the support of someone who knew exactly what she was going through. Maybe she didn't want it. Maybe she had never even thought to look. But it was a great feeling to be there for her at such a crucial time. I felt like the timing was just right and quite possibly "meant to be".

I shared with her information about CCA and talked to her about the recent retreat in Louisville. And although she didn't seem too interested in learning more, I figured she had much more important things on her mind as her son recovered. Hopefully this meeting will spark a friendship at the very least, and perhaps open her up to seeking out support from other craniofacial families in the future.