We welcomed Dillon into our lives in March 2001. He was such a contented baby—he hardly fussed at all, and he smiled all of the time. The only thing that was strange is that he somehow had this internal clock that would wake him up every two to three hours during the night. I started noticing something different about him when he didn’t want to explore his surroundings. He was perfectly happy laying on the floor and playing with his one favorite toy. His fists stayed closed, he didn’t coo or make baby noises, and he didn’t follow any visual movements around him. He had no interest in learning to roll over, crawl, or to sit up. I heard about a “mother’s intuition” but never realized I had it until then.
I knew something was wrong so I took him to the doctor for his six month check-up and then his nine month check-up and got the response, “He’s a boy, they are slow, and he’ll catch up.” I was a young mom and I believed him until he turned one and he still was not sitting up on his own. I took him to the doctor for his one year check-up and he handed me a pink slip that had said, “Severe Global Delay.” We went to the lab to have Dillon’s blood drawn to check for some genetic disorders.
On September 27, 2002, I received a phone call early that morning that changed my life. The doctor said that he had found out what was wrong with Dillon. He told me that Dillon has Fragile X Syndrome. I said, “Fragile what?” He told me that Fragile X Syndrome is a genetic disorder in the X chromosome and is the leading cause of mental retardation in boys. He then proceeded to tell me that it not only affects me but my sisters as well. I have two beautiful sisters and one of them was in the hospital that same day having her firstborn. He then told me that my dad is most likely the carrier and that he passed down the affected chromosome to all of us girls and that we would have a 50/50 chance of having a child with or without Fragile X. I asked what do I do next, and he then told me that he doesn’t know much about Fragile X and that I should seek information on the Internet and see a genetic counselor. And then he hung up the phone.
I was numb, scared and had no idea what to do next. I remember looking at Dillon in the living room and wondering how I am going to love him or take care of him? My sister called me an hour later and told me that she had a baby boy and she was so happy. I just remember crying so hard because I was happy for her but yet knew the possibility of her son being affected as well. Her son, Michael, also has Fragile X Syndrome. Even writing this letter I still feel the pain and tightness in my heart and stomach. I remember telling my husband when he came home from work and his response was amazing. He told me “We will deal with this, and that Dillon is Dillon and so what if he has Fragile X? He remains the same and we will love him no differently.”
I have been on a “search” mode ever since. I have been searching for resources that are almost impossible to obtain. I am on an emotional roller coaster and I never knew that I could feel so many different emotions in one day or even in an hour. Dillon is ten years old now and since then been diagnosed with Autism. He is functioning at a five-year-old level and has many behavioral issues that we are coping with. He still has the internal clock that wakes him up at four in the morning. It’s almost impossible to participate in any events, picnics, fairs or sporting events as a family. We have to arrange for a respite caregiver to join us or to stay home with Dillon which makes Scott and I feel very guilty and sad.
What is my greatest fear? What is going to happen to Dillon when Scott and I are gone? Who will take care of him? I know in my heart that Peyton and Colin will take care of their brother, but I have also seen over the years the amount of stress that the siblings have to take care of their own families in addition to their adult brother or sister. I hope that Peyton and Colin have enough support around them to help them with this because it is going to be hard.
I have lived in fear for many years after the diagnosis. Fear of the unknown, fear of discrimination, fear of my competency as a mother and a wife, and fear of failure. I remember laying on the kitchen floor sobbing and praying to God for help. I remember praying, “Lord, I just can’t do this anymore. I need help. I need to feel that you are with me because I feel so alone.” Since that day, I have learned about God’s Love and what it means to live a life for the Lord. He never left me. He was there all along. It was His will that I endured what I did for His purposes. I pray for strength every day and faith to trust in His words that He will never forsake me and that He promises to take care of me and my family.
My advice for parents with special needs children is to have faith in God; seek Him first. Ask for help from those that he sends into your life, and accept help from others when it is offered. There are so many people out there that want to help you but don’t know how. Surround yourself with people that live in God’s love. It will be of tremendous support. Take care of yourself and your marriage. Forgive yourself for not being perfect and forgive others for saying things that are insensitive. Some people are not going to be empathetic because they don’t understand your situation. Don’t let the diagnosis set limits for your child. Dream for them and make it happen. Live life to the fullest and have fun. Enjoy every blessing that God gives you and don’t give up!