Sunday, April 28, 2013

Grateful for Grandparents

My youngest son, Jacob, received his First Communion yesterday. Fortunately, we had a beautiful day in Michigan to enjoy such a special occasion!  

My Mom and Step-Dad made the trip from Indiana to Michigan, so that they could celebrate Jacob's First Communion and also watch him play baseball and hockey.  This really meant a lot to Jacob, as he typically only has Mom & Dad cheering him on at games (sometimes Big Brother Peter when I can make him look up from his book or video game!).  All of our family lives out of state, so we don't get to spend much time together.
When Peter was younger, my Mom traveled from Indiana to Michigan constantly to help out.  She was there for most of his surgeries and often came when he was sick. My Mom spent a lot of time at the hospital with us, and I am so grateful to have had her close by during the most difficult of times. Grandparents often have double the worry since they are not only anxious about their grandchild but also for their adult child. They witness the grief, anger, fear, and stress their child is going through while also enduring the heartache of seeing their grandchild crying in fear or pain.

This Sunday I'm grateful for all the CCA grandparents who give their love, support, and helping hands to their children and grandchildren.

Tuesday, April 23, 2013

Children's Craniofacial Association = One Big Happy Family

Another year has come and gone. As I sit in my kitchen, back at home, I cannot believe the CCA retreat is already over once again. It was one of the best ones yet. I never grow tired of it and honestly, I don't think I ever will. 

Even though it is called "Children's Craniofacial Association", as an adult, I feel that it is still incredibly important to continue attending these retreats and being a part of this amazing social network. One of my favourite things to do at the retreat is to mingle with the parents of a child with a craniofacial syndrome. I love talking to them about what I have been through and how far I've come, despite the challenges along the way. I want to give them hope that their child can do the same. Did I ever think I would make it to University, majoring in a subject that I love? Never. But here I am now, doing exactly what I always dreamed of. - It really doesn't get any better than that. 

Another thing that I really love is the overwhelming support I feel from my CCA friends. When I see these people every year, it truly feels like a 'family 'reunion' because in a way, we are one big happy family. There's nothing like it. Not to mention; people with craniofacial syndromes inherit similar traits, therefore we all look alike in some way. It feels like they’re my ‘distant cousins’ lol. Going to these retreats is like entering another world, my world. I feel safe, loved, protected and accepted. I feel like I belong; which is why I look forward to this every year. I never want to miss a chance to go back to this world, even if it's only for a short period of time. It always feels weird when I go back home after the retreat because I have to step back into the other world; reality

One of the things that really stood out to me this year was the love from the fathers. You can tell just by watching them with their child how much they really care for them. When I saw these fathers, I couldn’t help but wish that my dad would want to be there too. Even though I have an amazing mom; At the back of my mind, I have always wondered what it would be like to have my father there too. When a child is born with a craniofacial syndrome, they are going to need all the support they can get. Support from both parents is the most important thing.

Life is like a stack of cards, you’re stuck with the cards you’re dealt, and you can’t change it. When your child is born with a craniofacial syndrome, you have to either accept it or deny that it’s happening. Unfortunately, my dad chose to deny it. Growing up, I never felt the “unconditional love” from him, I always felt that he wanted to hide the “Pfeiffer” part of me and pretend that I was “normal”. Sure I was normal in some ways, but in other ways I was not. When my younger half-sister was born, I felt even more out of place. To me she was perfect. She had no abnormalities and no medical problems. This was hard for me to go through because once she entered the picture; I was no longer the only daughter in my dad’s life. He now had a ‘perfect’ daughter and I felt like the odd one out.

There was a point in my childhood where I didn’t want to deal with Pfeiffer Syndrome. I didn’t want any part of it; I just wanted to live a normal life. I realize now that this attitude was brought on by the way that my dad always treated me. “There’s nothing wrong with you. You’re perfectly fine. You’re the same as your brothers and sister”. So sometimes he made me feel that it was wrong to think that I was ‘different’, but yet deep down, I always felt different from my siblings. Since my dad saw me as ‘normal’, he always belittled my accomplishments in school. It took a lot of strength and effort to get through school while having surgeries at the same time; therefore it would upset me when my dad would shrug it off and say “well you could have gotten a higher grade”. This made me try even harder to do well in school so that I could make my dad proud. However, nothing I did was ever good enough for him.

Looking back, I see where most of my insecurities and doubts surfaced. It was from the lack of support and unconditional love. Even though it hurts not to have support from my dad, now I finally realize I don’t NEED it. I don’t need him. I have to focus on the fact that I have the love and support from my family, my friends and more importantly my friends from CCA. I feel sorry for my dad (and my siblings) for missing out on this amazing event every year. I feel so blessed to be a part of CCA that I wouldn’t trade this for anything. I am thankful to have this syndrome so I can use my experiences to help others who are going through difficult times.

This is exactly what CCA is all about; being proud of who you are and help others feel the same way about themselves. I am so grateful for my mom who has helped me become the woman I am today. I love myself just the way I am. I am not ashamed and I definitely don’t want to ‘hide’ the unique side of me. Unfortunately not everyone in our lives will be as supportive as others, but this is where you have to choose whether or not to let it bother you. I hate that I can’t share the CCA world with my dad and my siblings, but I am working on letting it go and just enjoying this part of my life.  

Always be true to yourself and be proud of what you accomplish :) 

“No one can make you feel inferior without your consent.”  ~ Eleanor Roosevelt

Road Scholar Transport Truck Spreading awareness for CCA!!

- Sabrina

Tuesday, April 16, 2013

Rick’s Raffle 2013

Rick's Raffle is a memorial raffle in honor of Rick Dornier, beloved CCA Kid. Rick passed away on Christmas Eve in 2009. One of Rick's Christmas gifts that year was a Thomas the Train play table, because Thomas was his favorite. That year, Rick's parents donated the table to their local Children's Hospital and a year later, Rick's grandparents, Ann and Doug Burgin (with input from his family), came up with the idea for an annual fundraiser, Rick's Raffle. 

The Thomas toys were Rick’s favorites and the winning ticket is drawn on Rick’s birthday.  The Burgin and Dornier families remain steadfast in their wish that funds from the raffle be designated for CCA’s Patient Financial Assistance program which will help families defray expenses during medical care for craniofacial conditions. Since it started in 2011, the memorial raffle has already garnered over $5,000 toward the program fund.

Children's Craniofacial Association is extremely grateful to Ann & Doug Burgin, founders of the raffle, and to Rick's family: Jessica, Randy, Julia & Luke for dedicating the memorial funds to help all CCA kids in Rick's name.

We need your help!  Please pass along raffle info to new ticket buyers or buy a chance to win yourself!  
If you win and decide you don't want or need it after all, you can always donate the prize back to CCA to raffle again to CCA families for the Annual Retreat raffle.
  This year, the Burgins have chosen a new deluxe 
 as the prize for the memorial raffle. 

It's easy to purchase tickets to enter the raffle:
$5.00 for 1 ticket
$20.00 for 5 tickets
$50.00 for 15 tickets

If you'd like to charge a multiple ticket purchase:
We can take Visa or MasterCard on the phone at
Call Jill any weekday at the CCA office.

If you'd like to use American Express, Discover or Paypal,
please go to our web site, and click on "Donate."
You will be directed to Network for Good where you may complete the purchase indicating "Rick's Raffle" along with all your contact info so we can reach you if you win.

In all cases, we will let you know your ticket numbers
 Drawing will be held on April 25th, Rick's Birthday.

Prize Details: This table features colorful Thomas graphics with 3-D molded engine faces and vivid pictures of all your favorite train friends. A 2-sided playboard allows children to play at any skill level.  Even young engineers can enjoy the thrill of chugging full steam ahead with the grooved track and built-in layout of the first board side.  When your little conductor is ready to take control of his or her track, simply flip the board over to reveal the Island of Sodor. The built-in drawer is a handy place to store engines and accessories and make cleanup easy. Table dimensions: 55.0 x 19.2 x 6.2

Prize includes 4 Extra Thomas & Friends Wooden Engines including Percy, the Small Engine, Thomas the Tank Engine, James the Red Engine and Rosie so, for beginners, nothing else is required to start enjoying this prize!

The prize is valued over $250.00

Sunday, April 14, 2013

Grateful Sunday

For today's blog, I would like to recommend a book which I believe is very inspiring for anyone living with a craniofacial condition.  It is the autobiography of Helen Keller called The Story of My LifeAlthough Helen's issues were extreme, I found many of the behavior issues she overcame and the attitudes she changed to be very relevant to growing up with craniofacial conditions. Boundaries between parents and child were a big part of her being able to become independent through the help of her teacher Anne Sullivan.  I also watched the movie the Miracle Worker a few weeks ago and found it to be very inspiring and I highly recommend it.   

-- Stephen

Thursday, April 11, 2013

Don't forget to register for Retreat!

Have you registered for the 23rd Annual Cher's Annual Family Retreat yet?

If not, you're missing...
 Dancing the night away...

 Making new friends...

 Being a part of the CCA Family... 

Rocking out with your girls... 

And lounging by this pool at the Omni Championsgate!

We will be staying at the Omni Championsgate 
and they have given us a discounted rate. 

If you need information and/or a retreat registration form, e-mail [email protected]. (Reminder: You may not attend the retreat without registering first!)
You only have until May the 24th.

Sunday, April 7, 2013

Grateful Sunday

Today I am grateful that even animals can spread the message of acceptance!

Click to see the incredible story of Lentil, an adorable puppy born with a cleft lip and palate.

Lentil, the tiny French Bulldog

You can read more about Lentil at


Thursday, April 4, 2013

Do You Look Through Windows or Focus on Mirrors?

One of my favorite analogies from Viktor Frankl is that of comparing a healthy eye to a healthy soul. He says that a healthy eye never sees itself. Likewise a healthy soul never sees itself either. The goal would be to look out into the world and see the world’s beauty (instead of ones own problems which would be likened to a cataract on an eye). Imagine a healthy soul focusing out into the world enjoying life.  Keeping the "eye" healthy would include offering forgiveness towards others and oneself.  And just like glasses need continual cleaning, so too with the soul to keep the "lens" clear and transparent.

This applies to the challenge of craniofacial issues. Even though the body may present itself as a challenge, a healthy soul can still enjoy life by focusing on the outside world instead of focusing on the limitations of the physical body.

Another example I like is that instead of looking into a mirror, try to look through life's windows. In the mirror you see yourself; through the window you see the outside world and other people.