Dreams for Our Daughter
Published: 2021-06-23 - Updated: 2021-07-29
Author: Kathleen M. Cleaver | Contact: Disabled World (Disabled-World.com)
Synopsis: The dream of independence for a child with a disability may look much different than a dream independence for a normal child - it often requires adaptations and modifications. When your child has multiple disabilities you begin to set new goals and milestones. For Tricia, absolute seizure control was a goal and a milestone reached when she was a year old. We were not able to celebrate her first steps when she turned one; we celebrated the day she was fitted for braces that allowed her to stand and eventually walk with assistance.
We all have dreams for our children. These dreams evolve and change as our children grow. For the most part, our basic dreams of our children growing into happy, healthy, independent adults come to fruition. When a child has a disability basic dreams are often difficult to achieve. Your world can be "turned upside-down!" This "new world" might require medical treatments, therapies, adaptations, special schooling and unforeseen financial obligations. If your child's care necessitates special training, finding child care can be difficult. Dreams for the family change. Over time, you learn to create new achievable dreams.
In Other News:
Imagine trying to bake a beautiful cake only to have it break apart when you remove it from the pan. What do you do?? You don't throw it away.You turn it into a trifle by cutting it up and layering it in a bowl with some delicious fruit and whipped cream! It isn't what you planned, but you still have a beautiful and delicious dessert. Our daughter Tricia is our beautiful trifle.
You follow all the "directions listed" for delivering a healthy baby, but still your baby is born with a disability. That is what happened with our first born, Tricia. Even the doctors said after her delivery, "We did everything by the book." Tricia was born by cesarean section after my labor failed to progress. Shortly before being taken to the operating room, I started having what felt like a very strong and painful continuous contraction. The fetal monitor had been removed so there was no way to tell what was happening. When Tricia was born her first Apgar score was 2. After resuscitation her Apgar score improved to 7. She was quickly transported to the NICU where she was given supportive oxygen and antibiotics for pneumonia. I had a quick glance of my beautiful daughter before she and my husband were whisked out of the operating room. When Tricia was twelve-hours-old, she had a seizure. Throughout the day the seizures increased to the point she was in status epilepticus. I was able to see her and stroke her tiny arm through one of the portholes in her incubator before an ambulance whisked her away to another hospital better equipped to care for her. Instead of feeling the joy of giving birth to a beautiful baby girl I felt physically empty and sad. It was time to create new dreams!
Tricia at 2 days old in the NICU.
I was unable to visit Tricia because of complications I developed after her delivery. My dreams of seeing my daughter were polaroid pictures my husband took when he visited her. I couldn't touch her but I could touch a blanket she had been wrapped in. I couldn't nurse her, but I could pump and send my milk with my husband when he visited her. Instead of celebrating Tricia's birth we found joy in any improvement in her health status. Tricia was three weeks old when I was finally able to hold her and bring her home.
Our dreams continued to change as the list of Tricia's disabilities grew. By the time Tricia was six- months-old, my dream of being a stay-at-home-mom organizing play groups with friends and their babies disappeared. My days with Tricia were filled with doctors' appointments, therapy sessions, and early intervention programs. My husband used his vacation days to help and support me with Tricia's appointments. Her baby book was tucked away in a drawer as the developmental milestones listed in the book no longer applied to her. It was time to create new dreams!
When your child has multiple disabilities you begin to set new goals and milestones. For Tricia, absolute seizure control was a goal and a milestone reached when she was a year old. Over the years, adjustments and changes in medication were needed, but our goal of Tricia being seizure free was achieved. The doctors predicted that Tricia would not talk. If your child has little or no speech, they still have the ability to communicate. You learn to identify their cries, their laughs, body movements, and facial expressions. Tricia does have limited speech that she supplements with her hugs and beautiful smiles. We were not sure how Tricia would develop motorically. We were not able to celebrate her first steps when she turned one; we celebrated the day she was fitted for braces that allowed her to stand and eventually walk with assistance. Instead of learning to run, Tricia had her wheelchair. She loved being pushed "fast and crazy!"
Tricia attended school. She took part in school plays, She had dances, proms, special award days, and a graduation ceremony. Vacations were planned around the adaptations required for Tricia's physical disability. Tricia and our family did the same things as other families but in a different way.
Tricia graduation picture at age 21.
The dream of independence for a child with a disability may look much different than a dream independence for a normal child. It often requires adaptations and modifications. Tricia is able to feed herself, but she needs her food to be cut up in small pieces. She expresses her food preferences but needs the food prepared for her. If assistance is not available to help her walk or push her wheelchair, she crawls on her hands and knees. We moved to a one-story house so Tricia is safe and her movement is not limited by stairs. There are adaptations in the bathroom so she can use the facilities safely. Her two younger sisters chose to leave home after college, find jobs, and support themselves. My husband and I chose to move Tricia to an intensive care facility for women who are intellectually disabled. Tricia is well cared for and happy in her new living arrangements. She has friends and activities to keep her busy. She enjoys home visits but looks forward to returning to her friends and activities. Tricia will always need care, but she is independent in her own way.
Letting go of dreams for your child can be difficult. Creating new dreams allows you to see their capabilities.
About Kathleen M. Cleaver
Kathleen is the parent of Tricia who has multiple disabilities caused by hypoxia during the birth process. She also has a younger sister, Barbara, who is legally blind. Barbara also has multiple disabilities. Both girls are now adults and live in an intensive care facility. Kathleen worked as a teacher of the visually impaired for 30 years before retiring in 2016.
Also by Kathleen M. Cleaver:
- Celebrating All Disabilities
- Hidden Grief Part 1: Kathleen M. Cleaver
- Hidden Grief Part 2: Grandparents - Kathleen M. Cleaver
- How the Politicization of Covid 19 Affects People with Disabilities - Kathleen M. Cleaver
- Living with a Sibling and Her disABILITY
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Cite Page: Journal: Disabled World. Language: English (U.S.). Author: Kathleen M. Cleaver. Electronic Publication Date: 2021-06-23 - Revised: 2021-07-29. Title: Dreams for Our Daughter, Source: <a href=https://www.disabled-world.com/disability/blogs/dream.php>Dreams for Our Daughter</a>. Retrieved 2021-07-30, from https://www.disabled-world.com/disability/blogs/dream.php - Reference: DW#322-13988.