Christine's Advice on Coping and Dealing with Grief and Mental Health

  By Christine Clinton

When I was a little girl growing up, the thought about losing a parent, or a loved one, never really crossed my mind. When I was six years old, my grandfather passed away; but I never understood the true meaning of death, or grief. Then, when I was twelve years old, my great-grandmother passed away. As I got older, I understood a lot more about death, and grieving the loss of a loved one. When I was 21, my grandmother passed away, and being in my early 20’s, I grieved my grandmother a little more than I did my grandfather, and my great-grandmother, because I was closer to my grandmother, and older. I have experienced the death of so many other loved ones in my life, and while I have experienced grief with each of the losses, the death of my father has been the worst for me. My dad passed away on May 25th, 2016. I had turned 40 years old in January of that year, and I had always thought that I would have my parents with me forever, although I knew death is inevitable. While my dad and I didn’t always get along, or see eye-to-eye, we both knew that we loved each other, and that was so important.

My dad always put his family first. His greatest joy was to see his family happy. He was always there for me, for every doctor’s appointment, hospitalization, and surgical procedure. Whenever I had any of my doctor’s appointments, he would make sure that he was home from work in enough time to take a shower. and get my mom and I to whatever appointments that I had. Whenever I was in the hospital, he would come home from work, come to see me in the hospital with my mom, and then leave to go home sometimes eleven o’clock or twelve o’clock at night. When I had my jaw surgery, he would bring my mom to my cousin’s house before he went to work. He would come to see me in the hospital after he got home from work, and then would go home with my mom late at night. He was always so happy, whenever I was happy. He never worried about himself, instead, he worried more about his family. My dad was a very hard worker, and while we had some struggles, we always made the best of whatever we had. He has three grandchildren, my nephews, who love and miss their grandfather very much.

Having a strong family connection and dynamic is so very important, but it is more important to someone like myself who has a facial difference. I don’t have a family of my own since I am not married, and I don’t have my own children. Having both of my parents when I was growing up, and as I got older, is so very important. I would love to have a family of my own, but I have struggled with that, and so I’ve come to accept my life as it is.

Since my dad’s passing, I have been trying to find some peace, and to come to terms with his death. Losing a loved one, or a parent, is never an easy task. Grief is so different, and each person grieves their own specific way. There shouldn’t be a timetable for grief, and no one should tell anyone how they should grieve, or for how long. I have a former acquaintance who told me that I shouldn’t be talking about my dad, or thinking about my dad; that I shouldn’t be grieving my dad. She said I had to live more of my life, and grieve my dad less. This hurt me so deeply. I’ve never forgotten that comment. We all grieve differently, and we all have different losses in our lives. No one should ever be made to feel like their grief, or their loss, doesn’t matter, or that they shouldn’t be feeling whatever they are feeling. We all have a right to our grief, and we all have a right to each experience a loss in our own very unique ways.

We could truly improve society so much if we removed the stigma around depression, grief, and especially mental health. It seems no one wants to talk about these things, because it is uncomfortable to talk about these things.

Fred Rogers from Mr. Rogers Neighborhood, has a very important quote. He has said, “whatever is mentionable, can be manageable.” He mainly talks about children talking to their parents, or a trusted adult about their emotions and feelings, or whatever the case might be; but it is also some very good advice for adults too. I think if more people knew more about depression, grief, and mental illness, and talked about it more, the folks dealing with it wouldn’t have to feel so alone with dealing with it.

We all need to be able to talk about how we feel. If we are able to talk about the things that are important to us, if we can make the things that are important to us mentionable, then we’ll be able to better manage our emotions and feelings. Adults, and children alike should have a trusted adult, or friend, that they can feel comfortable enough with being able to talk to; we all need someone in our lives who we can trust and turn to with our deepest feelings.

In conclusion, if we were all able to express our emotions and feelings, and be able to talk about our grief and our mental health with those whom we are able to trust, and if whatever we feel is mentionable, can be more manageable, we would be living in a much gentler, kinder, and loving society. Reach out to those who are struggling emotionally, or with their grief, and mental health. You would be very pleasantly surprised how much people will share with you, if only someone would listen to them.

Ask The Adaptive Athlete Returns With Rugby Player David Garcia

This story appeared in our 2020 CCA E-Network. David Garcia had just graduated from Brown University with a doctorate in chemistry. His next challenge was to start training for the 2024 Paralympic games as a rugby player. Read his story here reposted for your inspiration during CAM2021. 

 

“Adapt...persevere: because you are limitless.”

David Garcia, newly-minted doctor of chemistry from Brown University, is here to remind you that anything and everything is possible. He believes he holds the “blueprint of success for people with disabilities.” He challenges us and asks, “What is your excuse?”

David was born with Moebius syndrome, partial upper limbs, and no feet. He is the oldest of five born into a first-generation, Colombian immigrant family, living in New Jersey.  In his own words, nothing has ever held him back. In May 2020, he successfully defended his Ph.D. thesis in chemistry. Next up, he is training for the 2024 Paralympics. 

Life became easier for David once he accepted his body. There were moments of doubt, and plenty of questions from others like “what is wrong with your feet and hands?” David says, he “remembers the moment when the universe presented him with two options: to be consumed with self-pity or the second, to face my reality, accept my disability with all its challenges and refuse to be defeated.” Through the encouragement of lived experiences and a loving family he continues to preserve, to take every moment of adversity as an opportunity to grow. 

At age five, while surrounded by the bright lights and sharp tools in the operating room, enduring surgeries to improve the function of his eyes, mouth, and left hand, David realized that his “life was extraordinary” and he “had to be brave in the face of adversity.” 

He says, “Those surgeries, without a doubt, made me stronger and provided me with the courage to accept my reality.” 

As a child and teen, David says, “Every single step was a struggle. From the moment I could walk with my little prosthetics every step was a fight, a fight I learned to embrace.” He also struggled to accept his appearance. One day while putting on his prosthetics, he told himself “in order to play futbol, run, and have fun, I would have to put on my prosthetics everyday for the rest of my life.” While David has never looked back, each day was a struggle he had to overcome, mentally and physically. 

As early as elementary school and middle school David refused to be treated differently and rejected help from well-intentioned occupational and physical therapists. David says, “I taught myself to write with two hands, play fútbol with prosthetics, and perform in a band with soul.” During a trip to the beach as a child, he fondly remembers his mother telling him, “‘Davidcito, take off your prosthetics, enjoy your life, and jump into the water! Who cares if people stare at you?” Ultimately, she was right… “No one cares... but at that age it was difficult for me to share the same vision,” he recounts.

Now he can look back and realize these were seminal moments in his life. He muses, “I still feel insecure about my disability. Today, the difference is that I have learned to express self-love and embrace all my imperfections unapologetically. I have learned through self-reflection that my limb difference is not a weakness, but rather a shield that has given me the strength to forge my own path. I have learned that I am limitless.”

Today, David trains four to five times a week for one and half to two hours varying his workouts, alternating among the many muscle groups throughout the body with special attention to chest, biceps, triceps, shoulders, and abdominals. He begins with a lengthy warm up that includes stretching, 50 pushups, 10 pull ups, and 5 to 10 minutes of cardio. He concludes with more cardio and stretching after focusing on that day’s strength training.

For those interested in starting or continuing an exercise routine, David encourages that you define your goal by asking yourself “What am I looking to achieve? Then, once that is decided, you develop a fitness and nutritional plan that works for your body. The most important thing is to stick with your plan and see it through till you meet your goal.” 

Commitment to the cause is vital in this adaptive athlete’s opinion. A big piece of motivation may come from your past, remembering what you went through and overcame as a child. David says he was “empowered by my past successes, I never give up and [I] stay true to my vision. I remember the challenges I overcame, learning how to write with a pencil, learning how to shoot a basketball, learning how to ride a bike.” All of these successes were possible because he chose to adapt and persevere.

As you can see, in order to excel and work out at an elite level, a bulletproof mindset is required. David’s focus on how to adapt and preserve to meet his physical fitness goals also helped his mind become more nimble, too. Choosing to lift weights, play rugby, and just move is a powerful outlet for feelings of insecurity and powerlessness.  

“Exercising was always the key to keeping my stress and anxiety levels low. In fact, the less I exercised the more disordered my life was, and the more anxious I felt. So overall, exercise is crucial for maintaining my mind at equilibrium.” 

His next challenge will be training for the 2024 Paralympic Games as a wheelchair rugby player. He was recruited by his home country of Colombia to participate and compete for an olympic medal. David says he looks “forward to representing Colombia in the Paralympics and in the International World Cup tournaments during the next 4 years.” In between workouts, and rugby practice, David is pursuing motivational speaking and modeling in order to share his story with a broader audience. David also supports Positive Exposure, a New York-based nonprofit founded by award-winning photographer Rick Guidotti, that “is committed to creating opportunities to empower, support and embrace our disability community as well as all individuals and communities at risk of stigma, discrimination and exclusion.” As a member of the action committee, he is a living ambassador of their motto, “Change how you see, see how you change.”

Read more about David Garcia, his journey to acceptance, and why he wants to share his Moebius syndrome story with us on the blog at http://www.ccakidsblog.org/search?q=david+garcia (https://tinyurl.com/y9yqxly6)

Please follow David on Facebook, Instagram, and Youtube at @davidgarcialimitless. 

Celebrate CAM2021 With These Picnic Hosting Tips

By Kara Jackman

In the summer newsletter we suggested some ways to throw the best Craniofacial Acceptance Month picnic ever. We hope this newsletter article help you as you plan for a fun day of family, friends, nd acceptance.

Believe it or not, as you’re soaking up the summer sun, we are preparing for September! Craniofacial Acceptance Month is just a couple months away. Planning a successful CAM picnic should start now. Here are some suggestions for planning and hosting a top-notch event to raise awareness and celebrate our craniofacial families.


Find A Cool Location & Create Your Guest List

Location location location! As important for a party as looking for a new home, we suggest you find a great space. Consider a local park, beach pavilion, or set up in your own backyard. After a year and some change inside, everyone wants to spread out in the sunshine, so be sure there are plenty of spots for all your guests. It is wise to base the amount of space you will need on the number of people you plan to invite.

State or city parks are great because many are free to use, and provide cool amenities like grills, picnic tables, pavilions, and bathrooms. A playground for the kids is always a crowd pleaser. Be sure to check with your local municipality or recreation department to make a reservation (if that is required and/or allowed), get a permit, and/or pay a reasonable deposit or fee. If it is first come, first serve, you may want a volunteer to go early in the day and stake out the location with some signage and decorations to hold your spot. If possible, include a map and detailed instructions on your invitation, and include a day-of contact number, so people can reach you if they are lost or have something come up.


Invite Your AND Our Friends - Publicizing Your Picnic

CCA is happy to share your picnic location and details with friends in your area. Our database is filled with families you may or may not know. Let us help invite people and publicize your picnic. We are here to help! For instance, if you require RSVPs, you can count on 85-90% of your “Yes” RSVPs to show up. If you do not require RSVPs, it will be harder to estimate a headcount, but the rule of thumb is that roughly only 30-50% of your total invite list will most likely be there on that beautiful day in September.
Pick A Day That Works For All

Some may say the date may be just as important as the location. Choose a day that avoids federal, local, and religious holidays. September is also back-to-school month, so be mindful of fall school events, too. For instance, CCA has selected September 11, 2021, as our region’s official picnic day. We chose this day as it works best for us. However, you can choose the date that works best for you and your community. Since our headquarters will be celebrating on a day of national remembrance for many across the country, we have decided to include an activity where we will write “thank you” notes for first responders, followed by a moment of silence for everyone who was impacted on September 11, 2001, 20 years ago. If your picnic falls on that date, we encourage you to do the same.
Forage for Food

Food - It can make or break a party! You have a few options here. For years, we had our picnickers bring their own brown bag lunches. It’s the easiest way to make sure everyone’s needs are accommodated, but you have to notify guests to BYOLunch on your invitation.

If you plan to provide food, first, thank you for your generosity! Make sure you have a wide variety of snacks from the savory to the sweet to keep your guests' mouths watering. Variety also allows your guests to decide what works best for their dietary needs and food sensitivities. (Just make sure you ask the location or look for signs that state what their policies are about bringing food to your picnic place! At the very least, you must assume you’re responsible for proper cleanup and disposal of all food and paper products.)

Another option is to have each family bring food in a potluck style. If you go this route, we suggest you create a Facebook event or Google form for your attendees to sign up for things to bring. You don’t want a party with 15 dips, and no chips! Don’t forget to have someone bring disposable cutlery, plates, and napkins!

Finally, many CCA families have had great luck contacting local eateries and supermarkets to see if they are willing to donate food from their stores. Bottled water is a popular donation item and will keep your guests hydrated on hot days. Many local BBQ restaurants are often amenable to this type of donation, and CCA is proud to have our local chain, Spring Creek Barbeque catering our picnic! (CCA can provide our tax exempt letter for charitable donations and sample request letters. Contact us for more information.)
Organize Entertainment & Activities

Entertainment is vital for a poppin’ party. From music and crafting to sports and games -- pick what works best for your family and friends. Wiffle ball, an acoustic concert, a talent show, cookie decorating, face painters, a DJ, or painting “Kindness Rocks” are fabulous ways to keep your guests engaged.

In past CAM picnics, friends invited special guests to their events. A local celebrity (sports figure, local TV news personality, high school mascot), or local government representative (mayor, councilman, state senator), first responders (firefighters, police, and EMTs) could really give your CAM picnic the draw it needs to make a bigger impact.

Invite the press using our CAM press release, and don’t be shy! We encourage you to tell your story. Posters filled with pictures and definitions created by your family about craniofacial conditions will showcase your journey. For an added bonus, share how CCA was able to help your family embrace the craniofacial journey.
Party Favors

CAM picnics intend to promote awareness and acceptance! Make sure your guests leave informed! Contact Annie Reeves for CCA brochures, signage, newsletters, and other printed material that we can mail to you, free of charge. Folks will be able to bring them home to peruse throughout the year and share with their own teachers and librarians. Craniofacial Acceptance Month does not end in September. If you leave an enduring impression with your picnic, these resources will increase compassion and reduce the amount of teasing and questions in the years to come.

You can also shop our webstore for low cost party favors like stickers, vinyls, pencils, and bookmarks with our #ChooseKind slogan on them to share with your guests, too. If you contact us directly, we always give CCA families a bulk discount. Purchase higher price items for silent auctions or raffles -- these might include our logo silicone glasses or New Balance pullover.

You’ve Got This!

Have a great time! Take as many photos as possible or consider asking a photographer to volunteer their time for the day! After the big event, please email Annie (areeves@ccakids.com) with a short description of the day’s events, exciting special guests, the yummy food you served, and a few (or all) photos you took, so we can publish them in our next E-Network newsletter, and watch our CCA family advocate acceptance in action.

#CAM2021 Is Just Around The Corner, Press Release Inside

Craniofacial Acceptance Month is just around the corner. We look forward to spreading the message of acceptance with the world each September. Please celebrate with us by contacting your local media (TV, Radio, newspaper, magazine, etc.) to share your story with the world. You can use this press release to get their attention. You can find a pdf version on our website at https://ccakids.org/acceptance-month.html. While you're there, discover others ways to raise acceptance and our theme "I Accept Me, I Accept You," our program for social media, and see if there is a picnic near you. 

FOR IMMEDIATE RELEASE
August 14, 2021
Erica Klauber
Children’s Craniofacial Association (214) 570-9099 eklauber@ccakids.com

Help Kids with Facial Differences Highlight Self-Acceptance and Embrace Differences this September

Dallas, TX -- Children's Craniofacial Association celebrates its 17th Annual Craniofacial Acceptance Month this September! This year, our theme is “I Accept Me; I Accept You,” which we hope raises awareness about the universal need for both self-acceptance and embracing others’ differences. This is important to us because we represent and serve children and adults with facial differences.

CCA hopes that you can help our kids spread these messages to a wider audience -- from the playground to the airwaves! We believe that sharing the story behind our differences is the first step toward acceptance and building empathy for one another.

We want to end discrimination and bullying based on visible differences through storytelling. We believe that facial equality is a human rights issue, akin to protecting the rights of people of all races, religions, ethnicities, sexual orientations, veteran statuses, and disabilities. We hope to accomplish this by embracing the concept, stated so well by one of our parents, Stephanie Cooper, “more shares leads to fewer stares.” To that end, please help us this month by setting aside a segment on your local radio or television news program for a story about a local child or adult with a facial difference. We can help connect you with a CCA speaker near you! Anyone who has ever been bullied or teased can find an empathetic a support network via CCA Kids.

To help spread information and acceptance, CCA offers teachers and educators free curriculum with stories about children with facial differences, interactive lesson plans that foster tolerance, conflict resolution, and social and emotional learning, and classroom speakers via our #ChooseKind initiative. Teachers or parents can request these materials and/or speakers online at our website, and requests are filled weekly. In additional to lesson plans and activities that educate others about differences, we also offer free copies of the book Wonder, to educators in grades 5-8. You can access these resources at: https://ccakids.org/choosekind-initiative-new/. To date, we have donated over 15,000 books to students across the country.

About Our Organization: Children's Craniofacial Association, a national 501(c)(3) nonprofit organization based in Dallas, Texas, and founded in 1989. We serve over 20,000 families per year and an additional 10,000 unaffected students in schools across the country. CCA's mission is empowering and giving hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look. To learn more, visit http://www.ccakids.org.

#ThankfulThursday: In Memory of Robert (Bob) Opdyke, Family Sent 100 Families To Retreat

Text from image above: My husband, Robert, and I  became involved with CCA, because of our now 45-year-old daughter, who was born with craniosynostosis and was a patient at CHOP (Children's Hospital of Philadelphia). A dear friend of mine, who worked at CHOP, held several events for the kids as well as attended the CCA Retreat each year. She asked us if we wanted to help assist families attend the Retreat, and we were  happy to help! The first time I attended a CCA Retreat, I was overwhelmed by all of the families present. I loved hearing about their unique experiences and challenges. I was able to see firsthand the impact on these kids, teens, adults, and their families. It was so important for all of us to be able to attend the Annual Family  Retreat. Over the last 20+ years, my husband and I have been blessed to send more than 100 families to the CCA Retreat! I'm so proud we were able to do this, because it is such an important event for the entire family! Sadly, my husband passed away in May of this year and we were all heartbroken. My family chose CCA as the suggested charitable donation in memory of Robert. It  warms our hearts to know that each donation honored the most generous, loving, kind man we have ever met. He would have been so touched and honored by all the contributions that were made by our family and friends, especially knowing how important this Retreat is to all of us!