When Ellie was diagnosed as profoundly deaf, I was an emotional wreck. I was confused, angry, upset, intense, and uptight and down right scared. As a parent, you have hopes, visions, and dreams for your child. You want to give your child the best that life has to offer, and you want them to flourish.
Struggling with a progressive hearing loss myself, I recognized the challenges that awaited Ellie. The biggest challenge was trying to hear, speak, listen and communicate with the 90% of the world who could hear. I mourned for her because I knew first hand how difficult life could be without having a disability. I had struggled with my hearing loss for years. Although I wore hearing aids, I still had difficulty trying to understand speech and communicate with others, and I had a terrible time using the telephone. Everything in my life was affected because I was hearing impaired. The simple things in life were not so simple. For instance, I couldn't use a drive-thru because I could not understand what was being said to me over the microphone. I constantly burned my dinner because I could not hear the timer go off on the oven. Furthermore, I was always tired because I would concentrate so much on trying to hear that I was mentally drained. Basically, my quality of life was severely affected. In fact, if I didn't have someone with me to help me communicate and interpret what was being said to me, I was lost. I quickly realized that Ellie was going to face these same issues and challenges. I was devastated.
I can vividly remember holding my precious baby in my arms and sobbing uncontrollably as I caressed her face and held her tiny hand. Not only was I facing the challenges of being a new mother but, I was also facing the reality that my daughter couldn't hear anything I was saying to her! I can remember thinking, "what will I do?" How will I ever be able to continue with my life? How will I ever be able to shop with my friends again, go out for dinner, or take a hot bath without thinking about the fact that my daughter couldn't even hear a sonic boom? Would Ellie ever make any friends? Would she be sitting all alone at the lunch table in kindergarten? She would never be able to hear me say "I Love You." She would never hear birds chirps or dogs bark. She would never recognize the "Hokey Pokey" song or hear a horn honk if she accidentally ran into the street. My entire being focused around the fact that Ellie was deaf. Was this my fault because I was hearing impaired? Had I done this to my daughter? My sense of guilt was overwhelming. I wanted to help, yet I didn't know how. I hadn't planned for this. I didn't want to deal with this, and I quickly sank into depression.
My entire life was out of control. I didn't know what to do, where to turn, who to call, what books to read, or what doctors to contact. So for a few weeks, I did absolutely NOTHING! I lay in bed crying for hours upon hours, feeling sorry for myself. But after about 10 days, I got sick of feeling sorry for myself and realized that I was a mother and I had responsibilities. Slowly I began practicing the sentence, "My daughter is deaf. My daughter is deaf. My daughter is deaf." Once I had that down and could say it without completely losing it, I began the grueling task of researching hearing loss and the various options available to us. Let me tell ya--it wasn't fun. I consider myself a pretty resourceful person, and I had a heck of a time trying to understand all the audiology lingo: tympanograms, audiograms, ABRs, DB levels,etc.
That is exactly why I decided to create this Web site. If I had been so fortunate as to find a resource that addressed the emotional and psychological issues I was having as well as providing information on hearing loss, I would have felt a little better. While I understood a little about hearing loss because of my impairment, I still lacked the knowledge I needed to assist Ellie. As I began to research hearing loss and the options available to children, I became overwhelmed. I would go to the library, return home with 15 books, and only understand about a paragraph out of each book I’d read. Once I began to learn all the jargon and terms associated with hearing loss and the various options available for hearing impaired individuals, I started taking notes. My notes led to this: a comprehensive Web site full of three year’s worth of notes, thoughts and facts!
As you begin your journey to Holland, I would like to provide you with some reassurance. With each passing day, things become a little easier to deal with. Knowledge is power. And once you have the knowledge about hearing loss and know the options available to you, you can begin to be pro-active. Of course, the journey is long, tiring, trying and emotionally disturbing. But with the right resources, doctors, support groups and God’s help, you will get through this journey. And, if you're like me, you will never regret having a child with a disability because along the way you will grow, become more understanding, more empathetic, more sympathetic and will meet so many wonderful people. You will be less apt to take things for granted and a lot of your priorities will change. You will appreciate the simple things in life, like hearing your child say, "mama" for the first time. Your life will be forever changed but infinitely better. I wish you the best of luck and much patience as you begin your adventure.
All the best,