Here is the last article on our son that was written by Christena T. O'Brien - printed by our local newspaper, www.leadertelegram.com - on May 12, 2010
Joys, challenges of young boy's life remembered
Randi and Andy Stanley planned to celebrate their youngest son Brextin's third birthday Thursday.
Instead, the Eau Claire couple attended his funeral Tuesday.
"Brextin was a true angel," Randi said, "and I believe God gave him to us for a reason. He touched so many people, and I have been touched by so many people because of him."
Born on Mother's Day, May 13, 2007, Brextin died May 6 at Children's Hospital in St. Paul, where he had been taken for a second-opinion electroencephalogram, or EEG, which is a test that measures and records the electrical activity of the brain.
About two months after his birth, Brextin, also lovingly known as "Brexy Doodles," was diagnosed with West syndrome, or infantile spasms, a rare and serious form of epilepsy that usually affects babies younger than 1.
He also had microcephaly, a condition that is present at birth in which the baby's head and brain are smaller than normal for an infant of that age and gender, and he struggled with vomiting almost from birth.
The day before Brextin's death, "he looked great, and he was as happy as can be," Randi said. "I never thought that would be the last day he would be like that."
The number of Brextin's seizures began to increase, and by May 6 he was having about 12 a day, Randi wrote on her blog, Brextin's Hope. When he had a seizure, he would often vomit, and some of the contents of his stomach were inhaled into his lungs, and he developed pneumonia.
Randi had left the hospital at 3 p.m. May 6 to return home to Eau Claire to take the couple's older son, Brayden, who will turn 6 in August, to kindergarten orientation. She got a call about 10 p.m., asking if she wanted Brextin put on a ventilator.
On her return trip to the hospital that night, she was told "he was getting his color back, and everything was looking good."
When she arrived, she found Andy in Brextin's hospital room, holding their son. Initially, she thought Brextin was sleeping - until she saw Andy's tears.
Devastated, Randi fell to the floor.
"I missed saying goodbye to my son," she said, breaking down. Brextin had died about 11:40 p.m.; she arrived around 12:15 a.m.
Two years ago, the Leader-Telegram featured a story about Brextin, detailing the struggles the little boy, then almost 1, and his family faced.
Since then, Brextin had made a number of strides, said Randi, who tried therapy after therapy with her son. He was able to sit, kneel on his hands and knees and stand if supported.
"We were told not to expect him to walk or talk," she said. "He would have walked. We firmly believe that."
That said, Randi has found solace knowing her son with the beautiful smile and special giggle no longer has to experience the vomiting, seizures or any sort of pain.
The Elk Mound school district business education teacher also has been touched by the caring of others, including her students, one of whom created the Facebook page Students Supporting Mrs. Stanley.
Hoping to give back, Randi is planning to put Brextin's therapy aids and toys into her family's garage one day and invite parents whose children might benefit from them to come by and help themselves. She plans to sell what isn't taken and use the money to establish a scholarship in Brextin's name for students with epilepsy who attend Elk Mound High School.
"Brextin's life took a toll on our family at times, but it was a good toll," Randi said. "I want parents of (other) special needs children to not give up hope. Take one day at a time and believe in your child."
Again, I am so sorry for your loss Mrs. Stanley.
ReplyDeleteI know how much that darling angel is missed.
ReplyDeleteSo so sorry.
Jan from the IS list.
I am so sorry for the loss of you angel, Brextin. As a Mom of a 19 y.o. with seizures and global developmental delay, I know many of your struggles. I am blessed that she is still with us. I also lost another son at age five, so I understand your pain. It is a process of healing that never goes away, but changes so that eventually you can breathe, or smile and laugh without the constant sick feeling in your stomach. What a beautiful boy Brextin was. Thank you for sharing him through this blog. Please know I will remember him and also you in my prayers. Jeanne from the microcephaly group
ReplyDelete