Meeting individuals who go above and beyond to make a difference in their communities is truly inspiring. In this case, we have the pleasure of introducing you to a remarkable grandmother who is a true unsung hero. Her efforts and contributions to her community have not gone unnoticed, and we are honored to share her story.
CATXA : How can you describe your Special needs caregiver Journey? How did you feel when you received the diagnosis of your grandson? Did you have support from family and friends?
Stacy: My special needs caregiver experience began as a mere tragedy in 2007! My husband then had an estranged daughter that showed up during her pregnancy. This pregnancy ignited a bond between the two, and I fell in love with the baby the moment he took his first breath. Jacah was born perfectly healthy and then was brutally abused at five months old; he was taken immediately and placed in child protective services. I was devastated, as well as my children, to the point where my oldest son (12 years old at the time) said, "Mama, you have to get him; you are the only one that can get him!" My fight began. 2 months later, CPS granted me and my ex-husband custody of Jacah. I was not introduced to the term "special needs" until I began to live it. Jacah had many special needs that needed attention 24 hours a day. Initially, I thought my ex-husband and my ex-step-daughter would be excited and helpful that Jacah, their kin, was not lost in the system, but shortly after Jacah turned two years old, his entire birth family disappeared. During this challenging time, my boys provided indescribable help and support. Their presence and assistance lightened the load and demonstrated their love for Jacah and commitment to our family. CPS provided some resources for me to obtain daycare to allow me to seek employment and therapies for Jacah
CATXA: What inspired you to use your special needs knowledge to help in the community?
Stacy: The fact that Jacah was brutally attacked and abused by his biological mother's boyfriend, suspicions that she shared some of that responsibility, and his diagnosis of Shaken Baby Syndrome inspired me to share my story. Awareness about this horrific type of abuse had to come to light. Our journey needed to be shared. The way I saw Jacah fight so hard with that beautiful smile on his face inspired me to eventually start his social media page, "Jacah's Ladder," to show there is Life After Shaken Baby Syndrome. I wanted to share my life with the world to save at least one family from suffering the same tragedy. The 2nd reason I became so passionate about helping the community is because the community helped me! In 2015, I needed a wheelchair-accessible van. The community came out to our charity softball game, bowling tournament, and gala and purchased Love Has No Disability Shirts from all over the world (Africa, China, & Japan included) to help us with our mission. With such an outpour of support and being inspired by Jacah, my nonprofit organization, Love Has No Disability Inc., was birthed in 2015. On 2/17/2016, we were blessed with our van and vowed to assist other special needs caregivers, especially grandparents, in any way we could.
CATXA: What projects are you working on right now?
Stacy: Right now, I am working on our 6th Annual "Life After....." gala and Fashion Show for Special Needs Individuals that will take place on January 21, 2024, at the Humble Civic Center. It will be a COLOR EXPLOSION!! Instead of describing each model's fashion, we describe their disability. We are now accepting applications for special needs models, and ticket sales will begin on August 1, 2023. I have also published my very first book, Jacah's Ladder, which will take you on a rollercoaster ride into the life of a Shaken Baby Syndrome family. We are collecting neck pillows to donate to Texas Children's Hospital ICU parents. I spent 126 days in Texas Children's Hospital with Jacah, sitting and sleeping in a chair beside his bed. The only comfort I found was in my neck pillow and my blanket.
CATXA: How do you want to impact your community?
Stacy: Tell us about your organization. I want our community to know what "special needs" really means. Hosting events that include the community and are accessible & inclusive for all special needs individuals. Love Has No Disability is not just the name of my nonprofit, but it is my lifestyle. It is the lifestyle of every special needs caregiver. Our hearts are made the same even though we all look different; when we look at our babies, all we see is LOVE!
CATXA: As special needs caregivers our kids teach us lessons every day. What is something you have learned from Jacah?
Stacy: I have learned so much from Jacah. My biggest lesson is to face every situation with a smile.
CATXA: What is the biggest struggle special needs caregivers experience in our medical centers?
Stacy: The biggest struggle I've encountered in the medical center is plain old disrespect. Nurses, doctors, and staff must respect our opinions as parents who live 24/7 with our special needs child. My child is nonverbal, and I understand every facial expression he has. If I say he is in pain or doesn't like something, it should not be a debate about how I know it. I've experienced nurses coming into the room and going straight over to my child to assess him, never acknowledging that she sees me sitting next to his bed. There have been many occasions I have asked them to leave the room and start the WHO scene again, this time correcting the common courtesy mistake they made the first time.
CATXA: I know you are also an author. Tell us about your book and the inspiration behind it. Stacy: Jacah's Ladder was created to tell the raw, uncut, true-life story of Jacah Jefferson. It was also counseling and therapeutic for me to get out my feelings and emotions about how Jacah was abused, how I was abandoned during the situation, and how we took our lemons and made the sweetest lemonade!
CATXA: What advice will you give to fellow caregivers who are starting this special needs journey?
Stacy: I recommend a new special needs caregiver to keep your head up. Stay positive, and find the positive in every situation. Be creative, and find ways to make your life fun, exciting, and livable. Never feel guilty for taking a break for yourself. Look at your child and your situation as a blessing because someone else's experience is way worse than yours.
CATXA: How can other special needs caregivers connect with you?
Stacy: My website is http://www.lovhasnodisability.com
Jacah's Facebook page is Jacah's Ladder. My phone is always on
832-212-4395
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