Hidden Grief Part 1
Published: 2021-04-08 - Updated: 2022-03-11
Author: Kathleen M. Cleaver | Contact: Disabled World (www.disabled-world.com)
Synopsis: Article by Kathleen M. Cleaver, the parent of Tricia who has multiple disabilities caused by hypoxia during the birth process. Grief is often not recognized as a normal process of dealing with a child born with a disability. The birth of a healthy baby is showered with congratulatory cards, flowers, and balloons. When you give birth to a baby who is disabled or seriously ill, the joy of bringing a new baby into the world is lost. During the first few weeks after Tricia's birth people tried to give me words of encouragement for which I am grateful, but what I really needed to do was cry. I was sad and angry. How could this happen after a very normal and healthy pregnancy? How could this happen to my beautiful daughter? I was scared.
Grief is a normal process in helping you deal with a loss. When a loved one dies there are cards, gatherings of friends and family, religious ceremonies, support groups and even websites to support you and acknowledge your grief. American- Swiss psychiatrist, Elizabeth-Kubler Ross, in her book On Death and Dying, postulated the five stages of grief as denial, anger, bargaining, depression, and acceptance. The lines between these stages are not exact nor is the order of these. While some people may experience all five stages, others may experience only some of the stages. Even though scholars have questioned her work, her studies do reveal the emotion and cognition when coping with death or loss.
Grief is often not recognized as a normal process of dealing with a child born with a disability. The birth of a healthy baby is showered with congratulatory cards, flowers, and balloons. When you give birth to a baby who is disabled or seriously ill, the joy of bringing a new baby into the world is lost. Our daughter, Tricia was born by cesarean section at 38 weeks gestation after my labor failed to progress. What should have been a happy occasion turned into a nightmare. When Tricia was 12 hours old she had a seizure. As the day progressed the seizures increased as well as episodes of apnea when she stopped breathing. She went into status epilepticus which is a state of constant seizuring. She was transferred to a children's hospital where she remained for three weeks. Because of my medical condition, I could not visit her for the first two weeks of her life.
Photo of Tricia wearing a green top and sitting on a couch laughing
During the first few weeks after Tricia's birth people tried to give me words of encouragement for which I am grateful, but what I really needed to do was cry. I was sad and angry. How could this happen after a very normal and healthy pregnancy? How could this happen to my beautiful daughter? I was scared. Could I deal with a child who would grow to have multiple disabilities.How could I have negative thoughts about my own child. I became angry at those who tried to give me advice. I spent hours reading about child development for any signs of normalcy in my infant daughter. My baby was broken and I was looking for ways to fix her.
It wasn't until years later when I attended a presentation by psychologist Ken Mosses that I came to terms with my grief. Dr. Mosses, who has a son who is disabled, explained how parents of a child who is disabled experience grief similar to the stages described by Kubler-Ross. The difference is we are not mourning the loss of a person. We are mourning the loss of a dream. It is the disability not the child that causes the feelings of loss, anger, and depression. People who have not experienced this loss of a dream do not recognize or understand the grief we experience. While the services for children with disabilities have grown and improved, there needs to be support for parents too. There needs to be validations of our feelings, be it from family members or a support group of parents. Professionals need to become aware that what they say or how they ask a question can have a serious impact on how a parent reacts. The timing is also important.
As a special education teacher, I have attended numerous classes and inservice events instructing me how to maximize the potential of my students. These classes were very educational, but the most important and effective lessons I learned were from my daughter, my students and listening to their parents. I share their joy with every accomplishment and I see their grief in lost dreams.
I have accepted Tricia 's disability although I still cry when I see her struggle. Birthdays and special occasions can be difficult and sometimes bring on minor waves of depression. I have learned to advocate in a constructive manner when confronted with disparaging remarks. Yes, Tricia has multiple disabilities that prevent her from accomplishing "normal dreams." What Tricia does have is an abundance of love. That is the best dream a parent could wish for!
NOTE: The second part of this article can be found at Hidden Grief Part 2 - Grandparents.
About Kathleen M. Cleaver
Kathleen M. Cleaver holds a Bachelor’s degree in elementary education and the education of children whose primary disability is a visual impairment (TVI). During her thirty year career as a teacher, Kathleen received the Penn-Del AER Elinor Long Award and the AER Membership Award for her service and contributions to the education of children with visual impairments. She also received the Elizabeth Nolan O’Donnell Achievement Award for years of dedicated service to St. Lucy Day School for Children with Visual Impairments.
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Cite This Page (APA): Kathleen M. Cleaver. (2021, April 8). Hidden Grief Part 1. Disabled World. Retrieved May 22, 2022 from www.disabled-world.com/disability/blogs/hidden-grief.php