Mom on mission to raise awareness about Down’s syndrome after losing infant
Patricia White is hoping to help more people understand Down’s syndrome through her book, which chronicles the life journey of her only child, Bradley, who died from the genetic disorder at four years old in 2001. The book is titled My...
Patricia White is hoping to help more people understand Down’s syndrome through her book, which chronicles the life journey of her only child, Bradley, who died from the genetic disorder at four years old in 2001.
The book is titled My Extraordinary Son – The Triumph and Tragedies of Raising a child with Down Syndrome.
“Life is not over after losing a child. It is said [that] a parent should not be burying their child, but that does not mean one’s life ends with the death of their child. Life goes on ... ,” White told The Gleaner.
Down’s syndrome – or Down syndrome – is a genetic disorder characterised by the presence of all or a part of a third copy of chromosome 21. The disorder is usually associated with mild to moderate intellectual disability, physical growth delays, and characteristic facial features.
Though foetal echocardiograms showed that Bradley had cardiac conditions, White was hoping for a miracle when she gave birth to her son on July 15, 1997.
“Bradley was due on my birthday, July 28th, but because of what was showing on the foetal echocardiograms in the last trimester, they decided to do a C-section and take him. Upon delivery, they showed him to me. I smiled at his beautiful face. I was very happy to meet this little person, but they rushed off to put heart monitors on him,” she recalled.
She said [that] over the years, Bradley grew into a very sociable, loving, active, and playful boy despite his challenges, but her hopes and dreams for him were shattered on October 2, 2001, when he died.
“Whatever the age, whatever the circumstances, there is no good way to lose a child. Never! [Having] knowledge of the possible death of an ill loved one does not relieve the grief or pain,” said White.
Despite being cognisant of Bradley’s health condition, his passing came like a sudden knock at the door, she said.
“The morning of Bradley’s death was one of the saddest days of my life. A doctor who was attending to my son came towards me saying, ‘Oh, Mommy! His heart collapsed, his kidneys collapsed, and his lungs collapsed.’ On hearing those words, I collapsed. It took me some time to regain composure,” White told The Gleaner.
“Losing Bradley took the energy and life from me. I miss his kisses; his smiles; his presence, which generated a positive energy wherever he went; and his laughter when he was watching his favourite cartoon. We used to sing when we were heading home from the supermarket. He took the last note to the highest level, even when the song was finished,” said White, laughing at the memory.
Turnaround through therapy
The grieving mother found some comfort through therapy.
“Initially, it was very painful. My life went from my greatest loss, grief [and] depression to a positive turnaround through therapy.
“I was so angry at God for taking Bradley. I was a real wreck. Bradley’s life on earth had ended. His assignment was completed, and I soon realised that my job of caring for him was over, too. I was depressed. I was not bathing, eating, or sleeping. I did not wish to see anyone. I was in solitude,” White told The Gleaner.
She said a kind neighbour intervened and got her a job as a means of keeping her “occupied”.
White was assigned as a caregiver to a centenarian, but that job, she said, unearthed a plethora of new woes and a series of painful unanswered questions.
“Before my little king was four years old, he had five surgeries, and this 100-year-old man never had one surgery. Imagine that! I was so angry at God,” White admitted.
She said, however, the centenarian became an inspiration and a beacon of hope, and encouraged her to seek therapy.
Speaking of her decision to write the book, White said, “It started out when I was doing night jobs. I was not sleeping, and while the patient slept, I wrote letters to Bradley, telling him about events and occurrences during the day.”’
A friend then encouraged her to turn the letters into a book, saying that her story could help other persons going through a similar ordeal.
“Sometimes while writing, I would start crying because a memory triggered pain, and I would have to take a break. I also built a website, www.beyondthesunset.net, to encourage those who grieve to get up and go after their process and try and find that place of peace. I share with them how I found peace and could move forward in a brighter direction after losing my little king,” White said.
She said that penning Bradley’s story has brought her some solace.
“My book coach, Joan Randall, of the Victorious You Press, says there is power in the pen and I totally agree with her, because when I was writing I felt a sense of joy, comfort, and relief. I feel comforted, knowing I am now doing something positive. I feel relieved, knowing that I had asked God to forgive me for my foolish utterances towards Him, and He was now shining His face upon me, and that others who grieve will benefit in a tremendous way,” she said.
The book is available on Amazon.