Thursday, June 27, 2013

How To Handle Bad News at the Doctor: "You are Stronger than You Think"

This June contributors and guest posters were asked to write a post titled "How to Deal with Bad News from the Doctor." Our fourth post in this series comes from Sabrina Robineau. We hope you have found this series helpful and encouraging. 

"You are Stronger than You Think

It is safe to say that over the past 24 years, I have dealt with a fair share of bad news at the doctor’s office. Having been born with Pfeiffer Syndrome and a congenital heart defect, life has presented me with many challenges.

When it comes to coping with bad medical news, the one thing I have noticed is that my perspective has dramatically changed since I was a little girl. When you’re a child, the doctor's office is the last place you want to be. When the doctor comes in and talks about tests results and surgeries, you’re not really paying attention because your parents are doing that for you. When the doctor would give us bad news, these were the questions that I would ask:

-          “Will I miss a lot of school?”
-          “Will I still be able to go my friend’s birthday party?"
-          “Will it hurt?”
-          “How long will it be before I get to play with my friends again?”

Just before my 12th birthday, I found out I needed to have my shunt revised. Instead of being worried about the surgery, I remember asking the doctor, “Can we reschedule the surgery so I can have my birthday party first?” – As I look back on my childhood, it amazes me how ‘normal’ my life was, despite all my time spent at the hospital. No matter what I had to go through, I still wanted to play and hang out with my friends. I never wanted to miss too much school either.

As I got older, my ‘questions’ changed. I became more aware of what could go wrong during surgeries.When I would hear bad news from the doctor my main concern was ‘death.’ Instead of worrying about pain, missing school and activities with friends, the only thing I truly worried about was whether or not I would survive the surgery. The thing I feared most was dying.  

November 26, 2009, is a day that I will never forget. I had my annual check up with my cardiologist. Every year I get an echocardiogram to make sure my heart is working fine. At 20 years old, I had already been through 2 open heart surgeries. When the cardiologist walked into the office, nothing could have prepared me for what he said next: “You need heart surgery.” I was in shock. Even though we were warned that someday I would need a 3rd open heart surgery, I didn't think it would happen until I was in my 30's or 40's.  Even when doctors warn you in advance about future medical procedures, it is still surprising when the time actually comes. No matter how much you try to prepare for it, you can still experience shock and fear when you hear the news.

When we left the cardiologist’s office and got in my mom’s car I burst out crying. Suddenly it all hit me: the potential risks that come with open heart surgery. I was terrified. When you spend 20 years of your life going through so many medical procedures, you can’t help but think “How much more can my body handle?” - I asked myself “Is my body strong enough to go through a 3rd open heart surgery?” 

Upon hearing the news, I had 4 months to prepare for the surgery. My emotions were like a roller coaster; had many ups and downs. There were so many ‘what if’ scenarios running through my mind, such as: “What if I don’t survive the surgery?” I often expressed my concerns with my family and friends. They would always reassure me that I was strong and that I could get through anything. It really helped to have them by side. However, deep down, I was still terrified. I started wishing I was a little kid again so that I wouldn't be so worried about what could go wrong.

The heart surgery was a success, but the recovery process was very slow and tough. It was also hard on my mom to see me in so much pain. She once said to me, “I just hate that you’re going through this! It’s not fair. You've been through enough!” – My response to her was “You know what mom? I am just so grateful to be alive! I may be having chest pains, but at least I’m still breathing! I am still HERE!” Suddenly, my perspective changed again. No matter how bad the days were and how slow the recovery was, at least I was still alive - I survived! The only thing I was then focused on was getting through each day, one step at a time.

My 3rd open heart surgery showed me that my body is strong and can handle just about anything. What I learned is that I have to trust everything happens for a reason and that I should not waste so much time thinking about the ‘what ifs.’ We cannot stop bad things from happening but what we can control is how we cope with it. I don’t know what the future holds for me, but what I do know is that if I’m ever faced with bad medical news again, I will try to remind myself:  “You are stronger than you think. You can handle anything that life throws at you."


Sunday, June 23, 2013

Grateful Sunday

Have you heard about Lentil, the Ambassadog who is changing the way people view animals and people with clefts and facial differences?

Well, I don't think the folks at CCA could be any more grateful to this adorable ball of cute! Lentil and his friends recently raised over $14,000 for CCA!!! We're astounded and so, so grateful.

Lentil, Thank You and and your friends and family and the wonderful mission on which you've em-bark-ed. ;)

Happy Sunday, Lentil!

Lots of Lentil Love!

Sunday, June 16, 2013

Grateful Sunday: Nathaniel’s Father’s Day Gift

Happy Father's Day!

Today we have a guest post from Russel, a CCA Dad from Matthews, NC. Russel has two sons,  Nathaniel, who has TCS, and his brother Jacob, who is an amazing supporter! His lovely wife Magda is the rock of the family.

I guess Nathaniel, like any kid, is starting to wonder each Father’s Day, “What do I get dad?” 
At least I hope he wonders that!? Treacher-Collins Syndrome or not, shouldn’t every 9-year-old boy be of the age that he wants to please his dad? So what he’s had more than 30 surgeries in 9 years? I know, I know, kids aren’t always nice to him because he looks different. In fact, they are often downright mean. So what! Isn’t today my day? I know Nathaniel; the road ahead is still tough. Your mother, Brother Jacob and I still worry each and every day about the future that lies ahead for you. We know it won’t always be smooth. Sorry little guy, today that doesn’t matter. Because you see… TODAY IS MY DAY! Father’s Day!!

Nathaniel, I have news for you; I’m just kidding. You see since you’ve been born, every day has been a gift for me and you mother. No tie could ever teach me to be as brave as you! No golf club, shirt, picture or other trinket could ever replace what you give me with every breath you take.

This all requires greater explanation.

Before you were born I had hopes and dreams for our relationship. Teaching you how to play lacrosse was going to be awesome. Swimming in the ocean together was going to bring back memories of my own childhood with my dad. I would marvel at the number of girls you would date! We would wrestle, play tackle football generally do all the things that fathers and sons do. Boy, was I mistaken.

When you were born with Treacher-Collins syndrome, quite honestly, I panicked. I remember the moment you came from your mother into this world. I crumbled. Literally and figuratively, I crumbled to the ground. Were all my dreams of fatherhood shattered? Would you live? How would I raise a boy like you? What had I done wrong? Where would I turn for answers?

Then something strange and beautiful happened. Late that night, as your mother and I sat in a hospital room in total shock, tears streaming down our faces, something so wonderful happened. I know this might not make sense to you now, but when you’re a dad it will. It was late and Mommy and I were staring blankly at the television. It was some music show. And then, there she was, Christina Aguilera singing on stage all by herself. The song was called "Beautiful." Its chorus: "YOU ARE YOU BEAUTIFUL, NO MATTER WHAT THEY SAY!" Something in those words sent a chill down my spine. Mommy’s too. I got up and came to the side of your bed and stared at you for hours. You didn’t say a word. You didn’t have to. But you spoke to me. And I knew in that instant you were the greatest gift.

Since that moment you have taught me so many things and given me so many Father’s Day gifts. Other children with craniofacial differences do the same for their Moms and Dads, I'm sure. Here is just a short list of the gifts you have given me:
  • Toughness: I thought I was tough. I was wrong. Kids like you define toughness. And through you I have learned the true meaning of the word.
  • Laughter: In spite of all you have been handed, more often than not you laugh! You laugh with such passion that the world smiles with you.
  • Perspective: Because of you I have completely changed my view of what life is or should be. Because of you I know to roll with the punches, take everything in stride and appreciate the life we have been given.
  • Bravery: You walk into a room with reckless abandon and a smile on your face. Kids like you walk into rooms knowing there will be stares, glares and unkind words. Yet, you walk in. You never turn away. That is bravery and that is a gift.
  • And most importantly LOVE… Nathaniel you don’t do love a little bit. You give 100% of your heart and soul to the people in your life. Whether it is your friends, your brother, your extended family or me and Mommy, you have shown total and complete love. This my son is the greatest gift you could ever give me!
So, each Father’s Day from today forward I want to make you a promise: Don’t worry about the gift you will give me, because I promise you that each and every day I am blessed to have you as my son. It's is a gift I could never repay.

To the other special Dads out there: HOW LUCKY ARE WE? What we thought was a challenge has revealed itself to be a gift. So to all of you, HAPPY FATHER'S DAY! Cherish the gift we have been given.

And Nathaniel… love you duder tooter pumpkin rooter! 

Friday, June 14, 2013

Friday Remix: 35 Gifts Your Children Will Never Forget

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

 You give but little when you give of your possessions. 
It is when you give of yourself that you truly give.” – Kahlil Gibran

I have countless holiday memories. Most of them center around faith, family, and traditions.
Very few childhood memories actually include the gifts I received. I distinctly remember the year that I got a blue dirt bike, the evening my brother and I received a Nintendo, and opening socks every year from my grandparents. But other than that, my gift-receiving memories are pretty sparse. Which got me thinking… what type of gifts can we give to our children that they will never forget? What gifts will truly impact their lives and change them forever?
To that end, here is an alphabetical list of 35 Gifts Your Children Will Never Forget.
  1. Affirmation. Sometimes one simple word of affirmation can change an entire life. So make sure your children know how much you appreciate them. And then, remind them every chance you get.
  2. Art. With the advent of the Internet, everyone who wants to create… can. The world just needs more people who want to…
  3. Challenge. Encourage your child to dream big dreams. In turn, they will accomplish more than they thought possible… and probably even more than you thought possible.
  4. Compassion/Justice. Life isn’t fair. It never will be – there are just too many variables. But when a wrong has been committed or a playing field can be leveled, I want my child to be active in helping to level it.
  5. Contentment. The need for more is contagious. Therefore, one of the greatest gifts you can give your children is an appreciation for being content with what they have… but not with who they are.
  6. Curiosity. Teach your children to ask questions about who, what, where, how, why, and why not. “Stop asking so many questions” are words that should never leave a parents’ mouth.
  7. Determination. One of the greatest determining factors in one’s success is the size of their will. How can you help grow your child’s today?
  8. Discipline. Children need to learn everything from the ground-up including appropriate behaviors, how to get along with others, how to get results, and how to achieve their dreams. Discipline should not be avoided or withheld. Instead, it should be consistent and positive.
  9. Encouragement. Words are powerful. They can create or they can destroy. The simple words that you choose to speak today can offer encouragement and positive thoughts to another child. Or your words can send them further into despair. So choose them carefully.
  10. Faithfulness to your Spouse. Faithfulness in marriage includes more than just our bodies. It also includes our eyes, mind, heart, and soul. Guard your sexuality daily and devote it entirely to your spouse. Your children will absolutely take notice.
  11. Finding Beauty. Help your children find beauty in everything they see… and in everyone they meet.
  12. Generosity. Teach your children to be generous with your stuff so that they will becomegenerous with theirs.
  13. Honesty/Integrity. Children who learn the value and importance of honesty at a young age have a far greater opportunity to become honest adults. And honest adults who deal truthfully with others tend to feel better about themselves, enjoy their lives more, and sleep better at night.
  14. Hope. Hope is knowing and believing that things will get better and improve. It creates strength, endurance, and resolve. And in the desperately difficult times of life, it calls us to press onward.
  15. Hugs and Kisses. I once heard the story of a man who told his 7-year old son that he had grown too old for kisses. I tear up every time I think of it. Know that your children are never too old to receive physical affirmation of your love for them.
  16. Imagination. If we’ve learned anything over the past 20 years, it’s that life is changing faster and faster with every passing day. The world tomorrow looks nothing like the world today. And the people with imagination are the ones not just living it, they are creating it.
  17. Intentionality. I believe strongly in intentional living and intentional parenting. Slow down, consider who you are, where you are going, and how to get there. And do the same for each of your children.
  18. Your Lap. It’s the best place in the entire world for a book, story, or conversation. And it’s been right in front of you the whole time.
  19. Lifelong Learning. A passion for learning is different from just studying to earn a grade or please teachers. It begins in the home. So read, ask questions, analyze, and expose. In other words, learn to love learning yourself.
  20. Love. …but the greatest of these is love.
  21. Meals Together. Meals provide unparalleled opportunity for relationship, the likes of which can not be found anywhere else. So much so, that a family that does not eat together does not grow together.
  22. Nature. Children who learn to appreciate the world around them take care of the world around them. As a parent, I am frequently asking my kids to keep their rooms inside the house neat, clean, and orderly. Shouldn’t we also be teaching them to keep their world outside neat, clean, and orderly?
  23. Opportunity. Kids need opportunities to experience new things so they can find out what they enjoy and what they are good at. And contrary to popular belief, this doesn’t have to require much money.
  24. Optimism. Pessimists don’t change the world. Optimists do.
  25. Peace. On a worldwide scale, you may think this is out of our hands. But in relation to the people around you, this is completely within your hands… and that’s a darn good place to start.
  26. Pride. Celebrate the little things in life. After all, it is the little accomplishments in life that become the big accomplishments.
  27. Room to Make mistakes. Kids are kids. That’s what makes them so much fun… and so desperately in need of your patience. Give them room to experiment, explore, and make mistakes.
  28. Self-Esteem. People who learn to value themselves are more likely to have self-confidence, self-esteem, and self-worth. As a result, they are more likely to become adults who respect their values and stick to them… even when no one else is.
  29. Sense of Humor. Laugh with your children everyday… for your sake and theirs.
  30. Spirituality. Faith elevates our view of the universe, our world, and our lives. We would be wise to instill into our kids that they are more than just flesh and blood taking up space. They are also made of mind, heart, soul, and will. And decisions in their life should be based on more than just what everyone else with flesh and blood is doing.
  31. Stability. A stable home becomes the foundation on which children build the rest of their lives. They need to know their place in the family, who they can trust, and who is going to be there for them. Don’t keep changing those things.
  32. Time. The gift of time is the one gift you can never get back or take back. So think carefully about who (or what) is getting yours.
  33. Undivided Attention. Maybe this imagery will be helpful: Disconnect to Connect.
  34. Uniqueness. What makes us different is what makes us special. Uniqueness should not be hidden. It should be proudly displayed for all the world to see, appreciate, and enjoy.
  35. A Welcoming Home. To know that you can always come home is among the sweetest and most life-giving assurances in all the world. Is your home breathing life into your child?
Of course, none of these gifts are on sale at your local department store. But, I think that’s the point.

Thanks, Becoming Minimalist and Joshua Becker for this post.

Thursday, June 13, 2013

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.

Sunday, June 9, 2013

The Wonder of Wonder

Contagious acts of kindness started taking place in classrooms around the country this school year.  Many teachers were inspired to read the book Wonder by R.J. Palacio with their students.  For the classes that read the book, the message will remain with them forever:  Choose Kind.  

CCA was thrilled to come across such a positive story about a young boy living with a facial difference and wished to give it our full support.  We have always wanted to develop an educational outreach program to schools, and Wonder gave us the bridge to do finally do it.  Throughout this school year, CCA offered supportive materials to teachers, promoted the book on our website (, launched the "Choose Kind Challenge", offered to connect students with real-life Auggies, and developed simple and inexpensive merchandise for kids to show off their support.

From simply reading this book, random acts of kindness toward those living with craniofacial differences is happening. For the first time, our CCA kids have a platform that is encouraging them to be proud of and show off their differences.

I witnessed so many amazing things transpire this school year!  Like this photo, for example, of students leaning in to be close to Peter after hearing our "Beyond the Face is a Heart" presentation.  These students are definitely not showing any fear of getting the "Stinky Cheese Touch or Plague!"  How amazing is that?

Peter Dankelson with Students from Power Upper Elementary in Michigan
May 2013
I've watched student-created tribute videos like these that honor CCA kids.

Standing Ovation for CCA WonderKid Peter from 5th Graders in Baltimore

I've been brought to tears by student thank you notes like these from 4th & 5th graders at Pine Knob Elementary in Michigan.

Thank you so much for coming in to talk to us!  I learned a lot about being different and how it feels.  You are an awesome kid, you are very, very brave.  Also, thanks for telling us and reminding our class that you shouldn't judge someone on the outside,
because it's what's on the inside.  From, Chloe

Thanks so much for stopping by our class, Peter!  Your presentation really made an impact on my life!  You're a really funny guy!
I hope you have a great summer and cross your fingers and hope you get picked to star in Wonder!  From, Matthew

Dear Peter, Thank you for coming into our classroom on Thursday.  You really enforced the choose kind rule.  Also you are a brave boy because of how many surgeries you have went through and how you come places to talk about CCA.
Lastly, I thank you for giving us the bracelets.  You're a great kid.  Sincerely, Owen
Thanks Peter for coming in and telling us about CCA.  You told us a lot.  Guess what, when I got home I searched Auggie on the Internet and a picture of you came up.  You're famous!  Your Friend, Grace!

To Peter, Thank you for coming in to our class.  You were brave to come and talk about what you have.  Is CCA in Michigan or out of the state?  Do you like going to different places?  You are so funny!  I wish I had a remote and could rewind that whole presentation because that was really fun.  Do you know Mrs. Conner because I am her son.  I am so glad you could come here.  I hope you can come here when I am in 5th grade so I can see this again.  Do you want to play Auggie in the movie Wonder if they make the movie?
My Mom says Hi.  By, Jack
Even though you look different you have a big heart (no name)

Peter, thanks for coming in and sharing such valuable lessons that you have learned over the years.  We all really appreciated it.
It was very special meeting you.  Thank you for all the great stories and lessons!  They taught us a lot!!  Thanks, Abbey

Dear Peter, Thanks so much for coming to our classroom.  I would love to see you again so you can tell us more about yourself.  I really want to read the book Wonder and I hope you get picked to play the role of Auggie.  I don't care what you look like!
I care about the inside!  Your friend, Lily
Dear Peter, Thank you for coming in and teaching us about the CCA and yourself.  It does not matter what is on the outside, it matters what's on the inside and you are beautiful on the outside.  Sincerely, Ally

Thank You.  Dear Peter, You are the best kid I've ever known and your presentation was the best.  And I learned that the looks don't matter, the character matters so thank you.  Your buddy, Kyle
Peter - Thank you for coming in.  I learned a lot about you.  You are such a brave kid to have all those surgeries.
From, Alana (who also drew the "Everyone is Different" picture
Dear Peter, Thank you for coming to our classroom.  You made a big impact on me... even though you can look different,
everyone should be treated the same and with kindness.  Sincerely, Stephen
And, these Thank you notes from Portola Hills Elementary in California... Peter Reading Thank You #1 and Thank you #2.

I've read newspaper articles like these covering the book and creating awareness about CCA.

Newspaper story about how CCA Mom, April Gorman, inspired her community to read Wonder Wonder the book: Choose to be Kind published in Lake Highlands Texas paper

Newspaper story covering CCA's "Beyond the Face is a Heart" presentation to students Student Brings Touch of Wonder to School published in Farmington Michigan Observer

I've seen entire communities read Wonder and then embrace CCA's vision of "a world where all people are accepted for who they are, not how they look".  The cities of Santa Monica, Naperville, Rhode Island, and Tacoma are just a few that hosted community reads of Wonder and then passed out CCA literature at book discussions and author visits (R.J. Palacio visits Santa Monica)

I've witnessed students complete CCA's "Choose Kind Challenge" by donating their own money in support of kids like Auggie.  

Students from Sweet Home Middle School in New York bought CCA's Choose Kind wristbands

Students from St. Patrick School in Michigan donated over $400 and
purchased wristbands, buttons & bookmarks

Wonder is an incredible tool that teaches kids about empathy and kindness; it is destined to become part of every school's curriculum.  I have no doubt that acts similar to those mentioned here will occur in classrooms next school year.  CCA's own "Kindness Ambassadors", who are sharing the story of Wonder and bravely showing off their differences, are the real-life heroes who are making a positive impact in their schools and communities.  Bravo to these teachers, students, libraries, and CCA Families everywhere.  As Summer would say, "You are all "Cool Beans!"