Showing posts with label Siblings. Show all posts
Showing posts with label Siblings. Show all posts

Monday, April 26, 2021

Read Our New Siblings Support Overview






EDITOR'S NOTE: The sibling bond and experience is one that is very important to CCA and all its families. Without our brothers and sisters where would we be? Emily Holl, Director of the Sibling Support Project, a Kindering Program in Bellevue, Washington shares with CCA in this four-page overview a bit about what parents need to know to best support siblings of children with craniofacial conditions. There is great guidance, suggestions, and service providers in this helpful overview. We hope this helps!

A copy of this overview was published in our current E-Network. Please visit our E-Network webpage, and scroll to page 19 to read this thoughtful resource. To learn more about Emily Holl and her work with Sibling Support Project, go to their website or find them on Facebook, Instagram and Twitter.













Monday, June 10, 2019

Dillon Reflects Poetically About His Brother and Best Friend


Credit: Eric Lucas Facebook Page


By Dillon Lucas

Editor's Note: Seventeen-year old Dillon Lucas wrote this poetic reflection about his brother, and best friend, Brody. Brody was born with Apert syndrome. Dillon has watched his younger brother manage and overcome many surgeries. In this piece, he reflects on what the parental and sibling experience mean to him. He shows us the effect it has had on his family and himself through descriptive imagery and rhyme. Thank you for your thoughtful poem, Dillon. Writing is a beautiful way to honor our feelings, families, and personal experiences. You have captured them well. Keep on writing! Continue to share your spirit with the world.

My Best Friend

We have put him in the arms of a surgeon.
We have slept upright in a hospital chair.
We have listened to the beeping of machines.

We’ve been thankful.
We’ve smiled through the tears.
But with all of this going on all we can feel is fear.

We aren’t able to do anything when the time comes.
All we can do is sit there, hope and pray
That hopefully he will come out of that room one day.

The doctors, about to take him in the room.
I turn to my mom and she sheds a tear.
She leans to him and whispers “My sweet boy there is nothing to fear”

I hold back the tears after looking at my mother.
All I can do is wonder.
On what those surgeons will be doing to my little brother.

Monday, July 17, 2017

My Brother, My Protector By Brittany Stevens



By Brittany Stevens

My name is Brittany Stevens, and I’ll be 27 in August.  I was born with Nager Syndrome, a rare craniofacial anomaly which features missing bones throughout the body, microcephaly, a short chin/jawbone, bilateral hearing loss, and about 25% of us have Intellectual Disabilities. I’ve had 37 operations, including a C1-C2 Spinal Fusion, bone added to both feet, 14 sets of ear tubes and had my chin lengthened.

The chin surgery truly changed my life!  Growing up with a short chin, weak palate and thumbs that couldn’t bend was challenging.  My speech was limited and I have intellectual disabilities.  During my early years, I was taught some basic sign language. My family, especially my younger brother Quinn Stevens, had to pay close attention to me in order to learn what I needed or wanted.  My brother probably understood me better than my mother...and she really knows me!  Ultimately, having chin and gland surgeries allowed me to stop excessive drooling, gave me the ability to eventually work, but more than that, I gained a voice, and haven’t stop talking since!

Living with Nager Syndrome has so many challenges, including seizures, and so little was known about this Syndrome in the early 1990s. Because of the multitude of complex medical issues in my early years, I received more attention than my brother.  He was scared at times, but he eventually understood that my rare syndrome was just a part of my life, our lives.

Quinn is three years younger than me, and also born in August.  We graduated from Northeast High School in Philadelphia, PA in 2011, and he went on receive a degree in Criminal Justice from East Stroudsburg University in 2015.  I loved going to concerts and events when Quinn played the drums in the high school and in his college marching bands, including a solo presentation at the world renowned Kimmel Center during his junior year of high school.  My brother is tall, handsome, and always protects me.

 Education is critical for special families.  I attended Early Intervention at Easter Seals, and was blessed to attend Philadelphia Public Schools, via the Life Skills Program.  The combination of great, creative special education teachers, awesome family support, and a Mom who became my fiercest advocate, I blossomed into the unique woman that I am today.  I presently work at the PATH Workshop (People Acting To Help), participate in all kinds of activities via Special Vacations, an organization that provides unlimited events for adults with disabilities, and I go away to adult camp one to two weeks every summer where I continue to learn work and life skills (Carousel Connections Camp).


I also enjoy the theatre, movies, church, coloring and traveling, especially to see my Children's Craniofacial Association and Foundation for Nager & Miller Syndromes families at the annual and biannual retreats!  The retreats have allowed my family and I to see the country and make lifelong friendships.  Each year each retreat is my favorite. I had the opportunity to meet Cher, and many other wonderful people over the years. Even better, my mother and doctors have learned how to keep me healthy.  To our new CCA families, “Welcome,” and to all the families I know all too well, I look forward to tickling and hugging you soon!

Written by Harlena Morton
Mother/Legal Guardian of
Brittany Stevens

Monday, February 13, 2017

Family Spotlight: The Swihart Siblings




Hi, my name is Seth from Canton, Ohio. I am the oldest of my siblings and  I turned 14 on December 27th, 2016. I am in 7th grade this year and I like school. My favorite part of the day is breakfast and lunch and my favorite subject is math. I just had a hand surgery in October to straighten my fingers... it was my 32nd surgery. I will be getting braces on my teeth soon. I don't have any other surgeries planned anytime soon. I really like to read and like to play video games. I enjoy taking care of my dog, Lillie, and my cat, Tinkerbell. I also like taking care of our chickens, Henny and Penny. I collect the eggs and feed them.




Hi, my name is Gabriel Swihart. I am 11 years old and in 5th grade. I am Seth's younger brother. This year I am playing trumpet in the band and playing basketball in middle school. I am also a second-year Webelo in Scouts. I really like camping, baking and all the activities we do to earn badges. Right now I have around 17 badges. The most important thing in my life to me is my relationship with God and I try my best to be a good person but I am not perfect. Even though Seth may look different to others, he is my brother and I love him just the way he is. We should always treat people with kindness.










Hi, my name is Sydney and I'm Seth Swihart's sister. I am 10 years old and in the 5th grade. I am the youngest of my siblings. This summer,  I was able to attend  a week-long horse camp. I stayed over night all week and learned about horses. I groomed, fed, saddled and learned how to ride. I am saving my money so I can attend a more in-depth program  next year! This year in school I joined band. I play percussion as a drummer; it is a lot of fun. I also enjoy singing and theatre! When I grow up, I would like to rescue animals and maybe be an animal cop to help protect them. Being Seth's sister has taught me that kindness is very important and everyone needs to be treated with love. It makes me sad when people are not nice to him, so kindness is very important to me.

Wednesday, September 21, 2016

Personal Essay Wednesday: What I Learned From My Sister by Mark Jackman



By Mark Jackman

From Left to Right: Kara, Mark, and Meaghan, Mark's new wife.
Reader’s Note: Mark Jackman wrote this reflection about his sister, Kara, in 2002, as a college admissions essay. Kara completed her B.A. in English that same year, and, in 2004, earned a Master’s degree in Library and Information science. Mark was accepted to, and graduated from, Babson College in Wellesley, MA in 2006. He spent 9 years working for Bain Capital and is currently employed by Meketa Investments.

She does not cry to get attention, complain when in pain, or show any signs of discomfort until it is unbearable. I have seen her remain calm in a situation where I would have been unsettled, and tough it out when I would have fled. I am fortunate enough to live with the person who has inspired me the most and who has had the most influence on my life. This strong, yet shy and funny person is my sister, Kara.

Kara has been through several complex surgeries including the repairs of her cleft lip and palate, related ear and dental surgeries, and even braces, twice. The many years of doctors’ visits were never viewed by the family as a hassle; they were just part of our lives. We all never thought them bothersome, just a way of finishing the work that God had left undone. And, Kara, she never complained about the time or even the pain.

One example of her personality came when I was about the age of 12. My dad and I had traveled to Children’s Hospital to visit my sister before surgery. As I entered the room of whiteness, deep in the hospital, I was aware of the very clean smell of the hospital and the lack of color. The only break in color was my sister, wearing a blue johnny, sitting up straight in her bed. She was calm and collected as a nurse repeatedly stuck an intravenous needle into her arm and continued to miss the vein. My sister did not flinch or cry, but let the nurse keep failing and did not say anything until she finally was able to complete the task. When the nurse left, my sister responded by smirking, and saying “Hmm…Rookie.” She did not complain even though much blood was on her white sheets and the area on her arm that was probed was already turning black and blue.

I had to leave this room while she was being prepared for surgery. I sat in a large waiting area and watched one of two televisions. I was not really watching television, but staring at it to keep my mind off what could be happening to my sister. Soon, lost in my thoughts of what it was like to be put to sleep, my parents entered and assured me that Kara would be fine. My sister was sleepy with anesthesia, at rest, while a team of impressive surgeons finished God’s work. She would wake, I knew, quietly and gently. We would know she was back when her blue eyes twinkled, and she offered a quip that would make us all laugh.

The surgery lasted more than four hours, and I was able to see my sister after the fifth hour. She was groggy, tired, and uncomfortable, but still not complaining. She showed strength even when in this, the worst of all states. Then those groggy blue eyes twinkled and she asked, “Hey, where have you all been?”

Growing up with Kara was tough, tougher than was necessary. It was not only the procedures; it was all that went along with having a cleft lip and palate. Children, and even some adults, would stop, stare, point, and say, “What’s that?” The lip, the scar, the differences that made people ask many questions. Was she made to feel different, left alone, and sometimes isolated? Oh yes. But when you look at her now, you would be amazed to see that even those painful experiences have shaped the reflective and deep person she has become. You would see that the experiences that made her so resolute have left her with a rich sense of humor and wit.

Kara is not one to tell how much pain, both physical and emotional, she has endured. Kara makes the impossible seem easy, and she never says a word about it, not for recognition or sympathy. There is no self-pity, despair, or resentment. There is just a young woman who sees and feels things in a way that no one else possibly could.

Today, my sister is in her last year at the College of the Holy Cross and is doing very well. She has a major in English and writes incredibly well.
She brings to her writing a depth, a dimension of feelings and emotions that reflect who she has become as a result of facing extraordinary challenges. I know she will be successful in whatever she decides to do.

Not only my family and those who know Kara, but many others can gain something from my incredible sister. She has taught me not to worry about the small things, such as what to wear. She has also taught me to be strong and not give in to a problem, but keep fighting and eventually conquer the fear or problem. For all that she has taught me, my sister is the most incredible person I know. I feel that I am a more complete and stronger person because of her. I have learned through her example that tolerance, patience, strength, humor, and a sense of self are essential if one is to succeed and thrive. I hope to carry her ideals throughout my life.




Monday, June 13, 2016

Hospodka Family Spotlight





Bridget, our CCA Kid, is the second oldest of 4. She is 12 years old and keeps busy at Holy Name School, which she attends with her little brother and sister.  Moving up to 6th grade and middle school has presented its own sets of challenges and opportunities.  She has three main teachers and has to keep track of her FM amplifier when moving from class to class.  Her classwork has gotten more challenging, but she is more than capable of doing the work and excelling. After school, the fun doesn’t stop!  Bridget keeps busy with mass choir, chess, maker’s club, and played soccer this spring.  She loves texting and talking with friends, but hanging out is the best. In other exciting news, Bridget got braces!  She’s sporting pink and green bands and getting used to the new feeling and what she can and can’t eat.







Big brother Daniel can be seen at meals and for brief moments when he is not in his room reading everything he can get his hands on!  He is adored by his littlest sister for his ability to carry her everywhere and swing her around like a carnival ride.  After a tough freshman year, Daniel  transferred schools midyear, and the change has been beneficial for him academically!  He is looking  forward to taking more culinary arts and design classes.  This summer holds big changes on the horizon, as Dan got his driver's license and is looking forward to his first job.






Little brother Conor is busy riding bikes and racing BMX, when he isn’t bugging his sister.  I keep telling them they’ll probably end up being best friends. Since starting out at the track less than 2 years ago, he has earned a shelf full of trophies and medals, while making friends and inviting friends to join.  Conor just finished third grade, and loves math.  He is a Wolf Cub in Cub Scouts, and worked hard on his pinewood derby car—it was a submarine with room for a Lego captain to ride along!


Adeline is our tiny terrific not-quite-a-toddler anymore, but not quite a preschooler.  Daycare (aka “school at Miss Shannon’s house”), potty training, and getting into whatever looks interesting are at the top of her to do list.  She sings about anything that comes to mind, she babies any doll or stuffed animal that crosses her path, and she loves the heck out of all of us.


Although we won’t be able to make it to the Retreat in 2016, we hope to make it next year! Can’t wait to see pictures!


See you all soon!

Friday, April 1, 2016

Thank you, Jackson & Victoria

There are so many kind families who support CCA in a variety of ways. One of the sweetest is our CCA Kids who donate their birthdays to CCA to help raise funds to send kids to Retreat and surgery.

After several people did this on their own - thanks, Joe Brooks! - we were inspired to create a formal club, hence the CCA Birthday Club.
We are so grateful to everyone who has participated and is signed up to do so this year. One of our first Birthday Club members, Jackson Pond, actually donated his birthday in honor of his sister, Victoria, who has a craniofacial difference. We wanted to share his kind note and celebrate him for a SUPER SIBLING!

Thank you, Jackson, for your generosity and enthusiasm to make the world a kinder place!


Tuesday, March 22, 2016

Siblings in a Special Needs Family


Today's guest post is from Amy K. WilliamsAmy K. Williams is mother of two and a former social worker, specializing in teen behavioral issues. Parenting is her passion and she is especially involved in spreading the word about positive parenting techniques.

Siblings in a Special Needs Family


Relationships in families can be complicated, especially when siblings are involved. They are our first friends, confidants, partners in crime, and even our first enemies. Growing up in the same household allows siblings a unique chance to bond and forge relationships that are sometimes tricky to understand.

After all the fighting and backseat squabbles, siblings are bonded by shared life experiences that can unite people in very strong ways. Even though we might pick on our brothers and sisters, it’s nice knowing that they will always be there or have our back. Siblings relationships are precious and dicey, because occasionally real life interferes causing a few rough patches along the road. This is especially true in our families where one of the children has special needs.


The Needs Of Siblings of Kids With Special Needs

The reality of raising a child with special needs is that parents are often required to put in a little more one-on-one time or give attention towards meeting that child’s needs. Siblings often pick up on this and often develop feelings of resentment if they perceive a brother or sister is receiving all our attention. These very real emotions of sibling rivalry can be challenging for any parent, but can be especially taxing in a special needs family.

The brothers and sisters of a child who has special needs often are supportive and willing to help their sibling. However, there are times, just like in any other family, where jealousy might rear its ugly head. Siblings may surprise us and react in unpredictable ways if they are feeling one of the kids are receiving a lot of our attention and time.

“The siblings aren’t given as much attention, and they may not understand why,” said Dr. Jill Emanuele, a clinical psychologist at the Child Mind Institute. ‘Why are Mom and Dad always worrying about Peter? Why aren’t they paying attention to me? What did I do?’ ”

Underlying competition for our attention can easily cause a rift between siblings and even resentment to develop toward parents. This can occur even in normally understanding and protective siblings- after all, it is a common occurrence among brothers and sisters. In the same breath, it is important to realize that a side effect of these feelings is that children tend to act up, hide their emotions, and even deliberately disobey parents.


Support Siblings With The Following Ideas:
Remember that children are still children. Sibling conflicts are natural parts of growing up and the age of child can impact how they process the situation. Younger kids typically react in outbursts and have difficulty understanding why their sibling receives extra attention. As they age, new worries develop. Now a child might begin to notice bullying at school, worry about the future of their sibling with special needs, and if the condition could possibly be inherited by their own offspring.

Openly discuss a child’s special needs and the needs of other family members. Talking will empower family members and help kids understand the situation. Children often will seek any form of attention if they are feeling neglected- positive or negative. Allowing everyone a voice will keep the lines of communication open to benefit everyone. Remember, knowledge is powerful.

Find a support group for siblings in a special needs family. Whether it is online or at the local community center you are offering the youngest family members a safe place to share their feelings with peers who can relate to the situation and experience. Check out the Sibling Support Project or turn to the Internet for additional resources for siblings.

Help a sibling find an activity of their own to become involved in. Allow children to choose a cause or sport they are passionate about. If they decide to try soccer or 4-H, these organizations allow children to develop their own identity and give a boost to their self-esteem.

Allow siblings to tackle chores and duties around the home. By allowing siblings to help the family will ultimately create a solid unit and provide ample opportunities for positive feedback on a regular basis.

Schedule dates with all the children. Caring for a child with special needs does require extra work and taking the time to schedule quality time is necessary to show all children they are valued. Even if you need to find a sitter or hire help, taking the time to bond individually with our kids is definitely worth the extra hassle.


What ways do you try to keep sibling rivalry at bay?