May 2020 – Meet Emily, A Young Adult Who is Going Places!
May 4, 2020
Purple Playas Foundation Announces New Pediatric Fellowship at University of Florida Awarded Through Partnership with the Arthritis Foundation
June 16, 2020
Meet Braelyn (16 years old); he is one strong, joyful teen with an amazing dimpled smile. When he was born, he had no health concerns. At the age of 5 months old, he contracted meningitis, which resulted in multiple health issues and ultimate diagnoses. He has hydrocephalus, chewing/swallowing difficulties, neurological impairment, seizure disorder, and a compromised immune system.
Braelyn’s mom, LaKeesha, shared that she would like others to know even though he is nonverbal, he has wants, needs, and desires with good days and bad days. He is a 16-year-old kid who has opinions. She said, “His wants and opinions matter and people should see HIM first, not his disability.” Even though he doesn’t have verbal words, he has ways of letting people know what he wants and doesn’t want…and it is clear what he enjoys. Braelyn LOVES water. His favorite activities are going to the pool, enjoying the beach, being outside, exploring nature, blowing, splashing at water parks, popping bubbles, and playing with things that vibrate. These activities make him happy and calm.
Everybody’s story is different, but there are things that weave through stories that people with chronic illness can relate to on various levels with one another. Braelyn’s mom shared that they do have some daily struggles, but her biggest desire is to help find Braelyn’s sense of purpose and to give him opportunities for meaningful engagement. She also believes that they have to be more “germ aware” because one little germ can land him in the hospital. When they are out and about, they have to think ahead and be very aware. It is important that he doesn’t touch something harmful or “germy” and also that he can navigate safely without tripping. COVID-19 has been extra challenging and Braelyn’s family has worked hard to try to create some normalcy in midst of all the chaos. But right now, they feel that it is important to focus primarily on his social emotional health.
Through Braelyn’s illnesses and disability, his family has met awesome families, traveled to amazing places, had opportunities to advocate, and they have even started their own support group. Having Braelyn in their lives has taught his family how to appreciate the “little things”. Braelyn has an older brother and two younger siblings. And with those younger ones, they found themselves celebrating every single milestone and the miracle and joy of life because Braelyn gave them that deep perspective. Their lens has a huge scope where the good outweighs the bad. They see things through different eyes, profoundly value relationships, and so appreciate the blessing of Braelyn. Braelyn’s mom says, “Everyday that Braelyn wakes up is a good day!”
When on a journey impacted by chronic illness/disability, it is critical to find a support system, a network of “your people”. Braelyn’s mom admits they have lost people along the way. They now surround themselves with people who understand what it’s like to live with a child with chronic illness/disability. However, they are mindful of creating a balance and variety in their relationships by also including those who are not impacted directly by chronic illness/disability and who are there for you. Others may not “get it” as deeply, but you need a network of people so that you can call on whom you need when you need them. LaKeesha also wants to remind families to try not to isolate and to gather resources from others. LaKeesha shared, “Continue to be YOU to the best of your ability because as parents it would be easy to lose yourself in dealing with the chronic illness and disability.” Braelyn’s mom believes it is important to stay connected and know your support system. “Call on your faith and connect with something bigger and greater than yourself” is LaKeesha’s resounding belief.
Braelyn’s family believes in giving back to one’s community. They have a non-profit called “Support4Caregivers”. They provide resources and supports to families with children with chronic illness and/or disabilities, and it is sponsored by St. Joseph’s Children’s Hospital in Tampa, Florida. The support group started in 2011. They meet every other month and provide childcare. In addition, they host various events, such as special days for just moms or just dads. They want all families to thrive. They try really hard to not advise families to do things that they are not willing to do themselves. When Braelyn was younger, they were told that they should join a support group. The problem was that all the groups were diagnosis specific and Braelyn had multiple diagnoses and they didn’t feel that any of them fit their needs. So they decided to start their own. They admit that they get strength from this group just as much as the group gets strength from one another. They think it is because people come from various perspectives and ALL belong. Everybody has knowledge to share. LaKeesha advises that we should connect and share and learn from one another.
Information on Support4Givers
Mission: to provide inspiration, information, and support for caregivers and families in the special needs community.
Website: www.support4caregivers.org
Phone: (813) 850-2352
Email: [email protected]
