Tuesday, May 31, 2022

Are You Dreaming Like Delaney? Because We All Should!

By Kara Jackman

Delaney Cunha is not the average 10-year-old girl. Nope she is above average. Why? Because she took the advice "spread kindness like confetti" to heart. This is her lifelong mission with Drean Like Delaney, a fashion and lifestyle brand (and possibly a book too) that will sweep the nation once she gets a little bit older. Delaney believes everyone should be kind, brave, confident, but most importantly dream big, just like her. In fact, she believes so deeply in this that she has a 15-page business plan to back it up. 

Look out world! Here she comes!

For kids like Delaney with craniofacial conditions school can be a drag. (Not to mention, it gets in the way of executing on your business plan!) Kids are brutally honest and nitpick your every move. Meanwhile there is a lot to learn at school, too. Math, science, writing, reading and history are tough subjects. Add on some additional work in other areas, plus an upcoming very large surgery, and most of us would be overwhelmed. There was little time to execute that business plan or write the forthcoming book from this #WonderKid, but Delaney knew she had to do something to honor this special, scary moment in her life. She had to be brave. 

In spite of some tough questions and comments from her classmates around her extra services, Delaney decided to explain what her craniofacial life is like, and share her message of kindness with them, too. Even after classroom talks with her Mom, CCA Board Member, Kelly Cunha Pokorny, distributions of #ChooseKind gear, the kids continued with remarks. Now in the weeks ahead of her mid-face advancement surgery and three-month recovery with the RED device, Delaney took this as opportunity to really make an impact. She grabbed some fabric markers and large sheets of paper in her favorite colors, and brought them into her classroom, and to nearby schools, businesses and a few hospitals for people to sign in support of her mission and upcoming surgery. The Dream Like Delaney banner tour was on. Banners will visit the following locations, spanning the East Coast, as the Florida-based family travels to Boston Children's Hospital for the big mid-face advancement surgery: Deer Park Elementary, Bayside Sports Academy, St Petersburg Country Club, Moffitt Cancer Center, Johns Hopkins All Children's Hospital, Delta Airlines, and Boston Children's Hospital. 

In support of Delaney, her teachers and resource specialists at Delaney's school encouraged the kids to ask her about her upcoming surgery, write phrases of encouragement and support on the banner. During the summer, kids are encouraged to wear a bracelet in support of Delaney's surgery and 3 month recovery.

Delaney says of her classmates, "I had no idea they supported me until we told them about my surgery, and why I asked them to sign my banner." 

Wristbands will be distributed at all these locations to all Delaney's supporters, too. Hopefully these bracelets will raise awareness about craniofacial conditions and encourage others to ask "how can I dream like Delaney?" 

Further Delaney shares, "I teared up when I realized they really did support me and loved my awareness bracelets."

How can you go wrong with a color combination that are her favorites -- pink, purple, and red swirls? You can find those colors on her hearing aids, and the suitcase she will rock on her trip up the coast. 

The hope is to gather 200 signatures before the surgery on June 7th. Even if you do not sign the banner, you can join the movement by wearing rainbow colors or pink, purple, and red on June 7th to stand with Delaney. Kelly says, Delaney will most definitely be "brave like all of her cranio besties who have or will overcome the midface." Our support is a big piece to her quick recovery. You can follow "Dream Like Delaney" on Instagram and Facebook

Delaney has grown to love her face, with the support of her immediate family and extended CCA family. Kelly says of her daughter, "She loves skin care, makeup, hair styling and coloring, and vlogging. She enjoys watching beauty influencers like Kylie Jenner. Delaney loves to draw, act, dance, write, and sing, too." 

No one can get this girl down. "No doubt with Delaney's perseverance and strength, one day, we will see Dream Like Delaney become a reality!" shares Kelly. 

And we do not doubt it. Not one bit.  

Never Stop Dreaming.


Sunday, May 29, 2022

I Will Always Have Tennis



By Kara Jackman

One of the reasons I started playing tennis was because I needed help around gross motor skills, bust more importantly  my parents played tennis and enjoyed creating friendships around the social scene that it provided when they moved to suburbs from the city. They wanted the same thing for me. In turn, I received that and so much more. I now have a sport that I can play for the rest of my life. 

I never expected this thing that I enjoyed doing as a child with my instructors Maria, Ron, Eliot, and a legion of acquaintances that span decades, would improve my self esteem. Often I find myself saying in other parts of my life where I frequently make mistakes, "well, at least I have tennis." I may not be the most coordinated, sexiest, or even to be able to consistently regulate my emotions, but I will always have tennis. 

On the court, I got the validation I long desired. People would and still say, "you have very pretty strokes." As a person with a facial difference, I desperately wanted something about me to be pretty. I found that on the court. Otherwise I was relegated to the land of cute and sweet, quiet and kind. There is nothing wrong with these accolades, but when day in and day out the world tells you are not the norm in the looks department, you crave ways to distract from your appearance for positive reinforcement. Tennis and a myriad of other pursuits allowed me to love my body, face and all, for what it can do. Then I found it easier to love myself. 

Over the years, I evolved into a better player, but also a better person. Less klutzy and more capable of handling my emotions when they come. Much like the mistakes I make on the court, shanked balls, and "home runs" that sail feet overhead just to thwack against the back curtain, I know I will get another chance to do better next time. My strokes remain pretty, and people continue to take note, admonishing me with praise. My heart sings when they say it because on any court, I am just like everyone else. Something I have wanted from the very day I graced this planet with my presence. Finally, I belong. 

What are you good at? What helps you find confidence in you and your body? Is it athletics, art, performing, writing, singing, dancing, crafting, playing video games? Do you have a community that respects you for what your body can do? 

Find something. Explore all the options. Leave no stone unturned. You are worth it. Beauty comes to us in so many different ways. I challenge you to find it, and remember to hold on to it for a lifetime.  

Saturday, May 21, 2022

#AnnualRetreat2022 Let's Have Some Fun: Attractions, Parks, Museums and More in Dallas

There are so many fun things to do in Dallas  Between sessions, and gatherings we hope you have time to explore the city. Let’s take a look at all the wonderful attractions Dallas has to offer. I will say I limited my list to this venues that were accessible or adjacent to the M Line trolley. So no car, no problem, there is some thing for everyone nearby the Sheraton Dallas on Olive Street. 

Perot Science Museum 

First, the science museum, named after political figure Ross Perot and his wife, seems to be a “must-go-to” for all that love science. I hear they have great exhibition space for kids and some stompingly large dinosaur skeletons, and a gemstones exhibition, too. There truly is something for this one of kind museum of natural science. 

Dallas Art Museum 

Next up, we are going to switch gears a bit and take a look at something quieter than dinosaur roars and the clinking of explorers looking for gems. The Dallas Art Museum is one of my favorite spots to find some peace and solitude. It also is a feast for the eyes, and its alll for FREE. Yes, you read that right, it’s free. The museums exhibitions include a sculpture garden, Islamic art, and special exhibitions on modern painter, Michel Basquiat, and post World War II abstraction from Asia to the Americas, too. 

Both times I have visited, I never got off the first floor, and I didn’t feel I had to. This is a true gem, Check it out for free with your family and friends. There is a cafe to grab a bite to eat, and lots of open space around the museum as well. I have spied many a food truck in that area. So keep your eyes peeled, and your mouth watering

Dallas World Aquarium

The ocean and summer will forever be synonymous to me. Swim with the fishes, sharks, and more at the Dallas World Aquarium. Visitors will be dazzled by the wide variety of wildlife that live in and near water at this state-of-the-art aquarium located in downtown Dallas. Tickets are $25 per adult, $18.95 for kids ages 3-12. Ages 0-2 gain free admission. Get your tickets now as the museum has timed entry admission in place.

Sixth Floor Museum

History buffs, do not despair there is something for you too! Just a jaunt away from the Aquarium is the Sixth Floor Museum, which to me as a Bostonian and lover of all things John F. Kennedy, is hallowed ground. See Dealey Plaza, and the X in the roadway in front of what was the Texas School Book Depository where Lee Harvey Oswald’s final and fatal bullet stuck and killed the 35th president of the United States on November 22, 1963. Inside the building immerse yourselves in pop culture, the political climate and history of the late 1950s and early 1960s when Kennedy ran for and became President. Whether blue, red, or independent, the Sixth Floor Museum is a "don’t miss" while visiting Dallas. There is also a trolley tour that takes you around where JFK, and Jackie Kennedy travelled (or were supposed to) on that fateful day. 

Klyde Warren Park 

For those brave enough to go outside June's Dallas heat, head over to Klyde Warren park. There you can enjoy an expansive outdoor space with a children's park and play area, botanical garden, reading and gaming area, places to sit and eat, and more. Nearby you can grab a bite to eat from one of the food trucks that park nearby daily, or pop over to coffee shop or grocery store to pick up picnic essentials for you to enjoy with your CCA friends. 

And So Much More...

Because everything is bigger in Texas, there is always more to explore. The bishop arts district, the history of the rootin’ tooting cowboys in Fort Worth, or the award winning sports teams that play in Arlington, or at Cowboys stadium. Dallas never disappoints. Gather more ideas here in this article with suggestions from Girl From Texas (https://www.agirlfromtx.com/dallas-summer/) as she gives us a boots-on-the-ground view of what to do this summer in Dallas. Keep an eye out for her restaurant suggestions in this comprehensive blog piece.

Or watch this Youtube video from our Twitter friend @Kasventures on Youtube. 

Sunday, May 8, 2022

Grand Journeys: Tips and Tricks For Grand Caregivers


By Kara Jackman

My grandmother was a huge part of my days recovering from surgeries. She would bring her pastel crocheted blanket to the living room, and create a makeshift bed out of the loveseat in front of the TV. I remember these days fondly, and I am sure she did, too, as she was able to put her nursing assistant skills to work with her own granddaughter. Grandparents, along with family and friends who act in a grandparent-like capacity are a vital part of the family network that supports children and individuals affected by facial differences. They care for us, their kids, and their grandbabies in so many different ways. 

Encouragement and moral support is one way to help support the family member with a child with a craniofacial difference. As a grandparent there is not much you can do to take away the suffering of your grandchild, but there are ways to smooth the inevitable bumps in the road, like major surgeries and other medical care. You can send text messages, write positive notes, volunteer to babysit, and write positive affirmations to encourage caretakers to stay positive in front of their affected child. Care packages sent to the hospital, or packed before a big surgery are also a welcome support, too. Things like quarters for the vending machines, favorite drinks, snacks, and chocolate can go a long way in making them feel your love from a distance. Another wonderful tradition we heard about from the Laugharn/Lance family is the “Surgery Eve Sendoff.” Before a big procedure or surgery, both sets of grandparents take the family out for pizza. It’s a nice way to bolster both your children and grandchild(ren)’s spirits and something to look forward to amidst the anxiousness. 

Though you may not be front and center for your grandchild’s medical care, you may be there when others in your community ask questions about the child or individual. Be ready with some prepared responses to likely questions like “Why do her eyes look different?” or “What is wrong with her face?” Melanie Howington, a grandparent who just hosted a webinar for grandparents called Grand Journeys, recommends sharing something about what makes the inquirer unique. “God made her with big eyes, and you have beautiful curly hair that God gave you.” “She has a bigger head so that her brain can grow.”  If a parent or another caregiver is nearby, invite them into the conversation, and don’t allow them to “shush” the child or tell them to look away. Children are often just curious, scanning for differences. Reassure the other parents that it is okay to ask questions, if you are comfortable responding to them. 

Being a support person during the tough times around questions and teasing is one thing, but what about the trauma that your grandkids experience at the hospital during medical appointments and surgeries? Some of our grandparents suggest keeping an eye out on their outlook on life, emotional wellbeing, and social emotional interactions with others. “Reassure them that each surgery or medical intervention is for a reason, to breathe or eat better,” Melanie says. Siblings can help reassure too, because they are often the greatest ally the affected child has in their life. 

For days when the child will be in the hospital, suggest to the parents that a child life specialist be in attendance before surgeries or at medical appointments that might be scary. They have a whole host of tips, tricks, and games to keep kids distracted. Grandparents can help remind parents to model a positive, calm demeanor. The child will pick up on any worry and upset that the caregiver shows. Modeling an easy manner is vital to keeping trauma at bay. Melanie shares that a doctor told her that you can “raise a child differently and she will be different, or raise them just like you would any other child.” Encouraging caregivers and parents to normalize the hospital, medical equipment, and other things in the family’s life will help immeasurably. 

Maybe the most difficult part of being a grandparent is watching your child become a parent to a child born with special needs. There is so much grief and pain that you, as the grandparent, should acknowledge and validate. Don’t go overboard by bursting into the family dynamic to swoop in and save the day. Ask yourself is this a good time for me to step back or step in to help? Listening to what the parents or caregivers needs are in the moment, and honoring them is important to keeping the larger family dynamic healthy and happy. The family needs to have as close to a typical family experience as possible. Excellent awareness around boundaries will help you accomplish this seemingly monumental task. 

The ultimate goal of being a great grandparent or grand figure in the life of a child with a craniofacial difference is to be loving, fun, and encouraging. This should be your goal and role with all your grandchildren. Your children are strong, and supported by being part of the CCA family. They can do the hard things, too, with your loving guidance. The future will be bright for this next generation of CCA adults because of the impact you have on their lives.