My husband and I were excited in anticipation of the arrival of our first child. Family tradition dictates that he was to be named after his father. On an early November day, I delivered a little boy who was fighting to live. I remember that afternoon as if it was last week. I began questioning if I had given birth and what was happening. Around one o’clock, three doctors came into the private hospital room to see us. We were given a detailed but stringent account of our son’s medical condition. One doctor went on to share, “Your son, Baby Brown, was born with only a brain stem and fluid on his head. With these major complications and others, we didn’t expect him to make it through the night, but he has surprised us.” In a rather reserved and monotone manner, he went on to say, “However, statistics show us that these children live only a few days, and at most a few weeks.” They went on to share all of these medically complex words that swirled around in my head. After the doctors left, my husband responded, “I don’t know why this is happening to me.” I didn’t have an answer to his question. However, he wasn’t alone in this situation.
When parents, like myself, learn that they have a child with a disability, multiple disabilities, or complicated illnesses, they begin a journey that is uncertain and unknown. A journey that’s filled with strong emotions of anxiety, fear, dread of what tomorrow might bring, and disappointment to name a few. In the days ahead, there would be difficult choices to make. New medical professionals that you may have been unaware of are now very present, making decisions for your newborn’s well-being. What stood out was there was a great deal of uncertainty about my little one’s future. He was only expected to live for two days, then two weeks. Back then, there was little and often no information about my baby’s medical condition. I felt isolated and did not know where to turn for information, help, or support.
You may have just learned that your child has special needs and is searching for helpful information, support, and direction. I have worked with thousands of families who have a child with special needs. Many things can be done to help you through this period of trauma. It took me some time to realize that I was able to turn to family and a few friends for support. Over time, I was blessed to build a network of friends who encouraged us along the way. Yes, we had good days and some challenging days. My life has been blessed and enriched by having a son with Special Needs. He always looks for an opportunity to help someone. And, when he asks with a great big grin, “How are you doing,” or “Can I help you?” he sincerely wants to know.
Some Common Reactions experienced by parents of children with Special Needs when they learn that their child may have a disability include:
Confusion- It can mark this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion reveals itself in sleeplessness, inability to make decisions, and mental overload.
Denial- This can’t be happening to me, to my child, to our family.
Anger- It can affect the communication between husband and wife, siblings, grandparents, or significant others in the family, and with well-intentioned friends. Anger may also be directed toward the medical personnel who are involved in providing care for your child.
Fear- This is another immediate response. People often exhibit fear of not knowing what will happen in the future. Will my child be able to walk or talk? Will my child’s medical condition get worse or better? Will they be successful in school or go to college?
Guilt- This is concern about whether the parents themselves have caused the problem: “Did I do something to cause this? Am I being punished for something I have done? Did I take care of myself when I was pregnant?
By the way, my son Daniel, 35 years later, is a happy young adult who enjoys going to church, singing, and hanging out with his friends. We are enjoying life. You can too. If you feel you need help to understand how having a child with disabilities can affect your family and you need counseling and resources to help in the process, contact me at www.diannebrown.live to schedule an appointment to talk about some of the good things that can happen to alleviate the stress and anxiety associated with parenting.