Fear as defined by Webster: to be afraid of (something or someone): to expect or worry about something bad or unpleasant.
Standing in the Triage room at Cook Children’s Hospital Fort Worth, wondering, as the doctors and nurses do their job with my special needs child, “did I get here in time?” or “what could it be now?” Fear sets in hard and cold. There it’s always fight over flight.
As the parent of a special needs child there is an over abundance of fears to contend with on a daily basis. There is fear of the unknown, fear of someone harming your child, fear of letting go and the granddaddy of them all, the fear of loosing your child.
After years of making mad dashes to Cook Children’s Hospital while my daughter Dawn struggled to breathe due to Asthma I became familiar with that situation and therefore my fear was greatly reduced. I knew I could get her there in time and they could help her. I still worry because of her high tolerance for pain and inability to tell me what is going with her body that I will miss something huge and it will cause her harm but that is fear of the unknown and I’ve learned to save my energy for a fear I can battle.
The first time I took Dawn to school the fear response was near panic level. I never left the parking lot. I sat in the car all day, okay, it was only half a day, but it felt an eternity. The fear of someone harming her, teasing her, loosing her prompted me to put a temporary tattoo on the back of her neck that said, “I need help please call ###-####”. http://store.safetytat.com/store/index.php?main_page=index&cPath=1_5
Hiring a caregiver was torture. Who could ever take care of my child the way I can? The answer is no one. And, that is the point, we can take precautions and be diligent but in the end we must learn to overcome our fears so that our special needs children will not loose out on opportunities in their life because of our fears. One of the most important things we can do to quell that fear is through information. It’s imperative to have a folder or a memory stick that contains contact info, medical history, current medications, medical diagnosis’ and to have legal documents in a safe place. We can issue instructions, temporary tattoos, but we can’t protect them every millisecond of their life. Once I understood that I began to balance my fear with whether or not I was impeding Dawn from living her life. As hard as it is there are times all I can do is be there for her like when she gets her heart broken, when she realizes she isn’t getting to see her dad or when doctors have to take more blood.
As she has gotten older I’ve learned, the source of my fears is the same, the unknown, harm and loss, the subject changes and I must walk through more fear. I am no longer just her mom with super powers but her guardian because now she is eighteen. She talks about getting a job and moving away from home when she marries! Of course, she sees the panic on my face and assures me that I can come live with her anytime and she’ll never be far away. I breathe deep and say, “thank you baby girl and what kind of house will you live in?” She tells me and my fear is calmed, for now.
