IN MEMORY OF
Brian F. McDonald
IN HER OWN WORDS
Laura McDonald’s tribute
to Brian, her son
When Brian was born, we had all the same hopes and dreams for him that we had for all of our boys. Before too long we realized that the child we loved was not the one we had expected. We hurried to professionals hoping to “fix him.” I remember feeling like there was a great big hourglass and each grain of sand that fell represented a piece of his potential.
We had traditional therapies, non- traditional therapies, surgeries, evaluations, and experts of all kinds. He was inspected by anyone I could find whom I thought might help bring the child that I had expected to me. He was a prisoner of his own body.
One day, I remember Dr. Chartor asked me, “What do you want for Brian?”
“I just want him to know that life is good,” I tearfully said.
I am not sure when it happened exactly, but when he was five or six Brian started to emerge. Little snippets of this person we had not expected began to shine through. Somewhere along the line we stopped trying to fix the child that we had expected and started to enjoy the child that was.
I was over the moon for this boy. He had me right where he wanted me. He laughed at my jokes, liked my singing voice, and appreciated my care. He was, and still is, an angel who is full of the devil. He loved a little gossip. He shared his love openly. And, he knew the value of a good laugh.
His personality made fertile ground for nicknames. A few years ago, a 70-year-old hairdresser in a white Speedo bathing suit from New York City saw the caravan of equipment and supplies that it took to bring Brian down to East Sandwich Beach, and asked “Who is this, the Dalai Lama?” Of course, it stuck. Other names included: Briola, Mr. Rooney, Micky Finn, the Big Ragu, B-Mac, Dolly Boy, and most recently “The Situation.”
So here we are, 21 years later with the boy who was born between a rock and a hard place. Some may ask, “What was the purpose to his life? Why did he have to be so challenged? What value did he have? And, why would he be missed?”
But the people who knew him, know the answer: He was physically flawed, but spiritually flawless.
“I had a dream visit recently. Brian was lying with his head on my pillow. You know when you are so close to your baby that you inhale what they exhale. We did that so many times. I would lie next to him and wrap him up in my arms and cuddle up. He was just there, the warmth of his presence filled me up. He was smiling that sweet little smile that means contentment. We just stayed there for a while being with each other then I faded into wakefulness. Tears filled my eyes when I realized he was gone.”
– Laura McDonald
We have been learning at the knee of the master. He taught us to live in the moment, to love with all our hearts, to look for silver linings, and that the glass is not only half full, but overflowing if we take the time to see how blessed we truly are.
We took the time to experience his grace, and through all the trials and tribulations we know that we have been living in the presence of an angel.
– Laura McDonald, in memory of her son Brian McDonald.
Years later, a child’s life brings warm memories
Everywhere Brian McDonald would go, he took with him a bright light that those around him – even if he was meeting them for the first time – couldn’t deny.
He loved sports and spending time with his family, especially hanging with the “boys” – his two older brothers and his dad. It wasn’t so much the desire to engage in sports or activities, his mother remembers, it was the warmth and companionship of a loving family that he enjoyed most in the world.
“Brian loved to hang out with people, and he had this really wide smile,” remembered Laura. “He just laughed, and he was just very, very sweet. He got whatever the joke was in the room. Brian loved being part of the group, and we loved having him there with us.”
Brian McDonald was born with a severe case of Cerebral Palsy. He was an important part of a loving family, and although he would face many challenges in his life, Brian also had many achievements. Chief among these were his ability to inspire everyone he met.
“Everyone loved him so much,” Brian’s mother remembered. “People just gravitated to him. He was a wonderful son.”
Brian’s life was inspiring. Unfortunately, it was lived in a shorter time span than most. Although the majority of children born with Cerebral Palsy are expected to live long, healthy lives, some – particularly those with a severe case of Cerebral Palsy – can end much too soon.
In 2010, Brian McDonald succumbed to complications of severe Cerebral Palsy, with his family by his side.
Since Brian’s passing, it’s been a long road back for his family. For Laura, who had cared for Brian full-time since his birth, her grief was palatable for several months. Then, she remembers experiencing a void.
“One of the things that hit me was that Brian was my 24-7 occupation,” she said. “I didn’t realize that there would be this enormous hole for so long – until he was gone. I missed him so much. I did so many tasks for him, and there was such joy in those tasks.”
Losing a child is a devastating occurrence for any family; for parents, there is a sense that events are taking place out of order. For parents that have endured the loss of a child, there’s simply no way to prepare for the grief and sorrow.
But Laura has a message for parents that face the loss of a child – you will recover. And, you will be able to face the world again. Doing so, however, takes time.
“With grief, everyone has their own process,” she said. “For me it helps to be appreciative. It was such a privilege to have him – and the closeness – in our lives for 21 years.”
Being born Brian
Brian F. McDonald was the third son of Laura and John McDonald, a young couple living in the Boston suburb of Wayland, Mass. When Brian was born on February 15, 1989, he joined two boisterous little brothers, David and James, in the McDonald household.
Laura first noticed that Brian was not meeting developmental milestones when he was an infant. Additionally, Brian developed cataracts, a condition that is typically associated with seniors.
“There was not, initially, a clear reason for his disability,” Laura remembered. “But within the first few months, the cataracts began developing. His body also seemed floppy, and I noticed fluctuating tone.”
Initially, Laura and John were told that Brian would have developmental delay. This, to her, implied that he had a condition that could be rectified. But after many appointments with pediatricians, neurologists, and specialists, Brian was diagnosed with severe Cerebral Palsy. The family immediately sought early interventions.
It wasn’t long afterwards that Brian underwent two surgeries to remove cataracts.
Growing up, Brian was nonverbal, nonamublatory, and had intellectual impairment. He also endured seizures fairly regularly. Because he was a silent aspirator, Brian was nourished via feeding tube supplemented with conventional food until he was about 6-years-old when he was fed exclusively by a feeding tube.
At age 6, Brian would face a medical crisis. A malrotation of his GI tract was causing significant problems, which required correction. Brian underwent a long, painful surgery that rebuilt his GI tract. For the next 16 weeks, he would recover in the hospital. While he was there, he would receive last rites.
Like a trooper, Brian pulled through the surgery, and happily re-joined his family, each of whom were elated that he was back home.
There were other challenges. Brian coped with respiratory issues that affected his health throughout his life.
The trials of Brian’s health challenges, however, didn’t affect his personality, his mother said. He still enjoyed wearing his clothing emblazoned with his favorite sports team insignias. He still enjoyed his parents or brothers reading to him.
He liked going to school. Brian was enrolled in a dedicated special needs program on the campus of Boston College.
Above all, Brian enjoyed being one of the guys, especially when it involved his brothers, with whom there was a mutual adoration.
Surrounded by love
For the McDonalds, caring for Brian required balance while meeting the needs of their older children. Laura said that doing so was something they didn’t think about. They just dug in and resolved to do what they could to enhance Brian’s quality of life.
“My husband and I used the divide and conquer method,” she said. “We worked together to make sure everything was taken care of.”
As Brian grew older, he faced more health challenges. As Brian aged, Laura believes his organs simply could not support a young man of his size. Brian became increasingly dependent on oxygen because of significant damage to his lungs. This condition led to his hospitalization in 2010.
Brian’s breathing deteriorated to the point where the McDonalds were forced to make excruciating decisions about their son’s quality of life. In their decisions, they honored their son’s lively, vibrant spirit.
“He would have been on a vent as long as he could survive if we had chosen that,” Laura remembers. “We chose – as a family – that it was not what we wanted for him. It would be the quality of life that we had always valued so highly for our son.”
Surrounded by his family, Brian McDonald passed on June 3, 2010.
During the first few weeks that followed, the McDonalds depended heavily on the love and support from family members. Laura and her family had all of the emotions that one would expect after the loss of a child – but each family member coped in their own way.
For Laura, who had spent the last two decades as her son’s primary caretaker, there was a whirlwind of emotions including sorrow and even guilt, though she knows that her feelings of guilt were not rational. There was a huge void, both in her life and in her heart.
“I agreed not to do anything for a year,” she said. “I needed time for myself, and for the family.”
Something that worked to help Laura get past the initial shock and grief was to remember Brian’s life, and what it meant to her family.
Through Brian, Laura feels her family knew a love that many others will never know. For example, Laura and John’s other children, David and Brian, never missed a beat as they did their homework in Brian’s hospital room when he was receiving medical treatment, and today, they remain strong, sensitive and compassionate young men.
By allowing herself the time to grieve her son, Laura began to understand what many parents that have lost a child feel: that a child’s bright light may no longer be seen, but the presence of their love remains.
Laura also takes pride in the fact that Brian was able to make life-saving contributions to others. Brian’s corneas helped restore the sight of two people; a 27-year-old woman and an 80-year-old man.
“I wonder what he will think of the sighted world; the marvels to behold,” said Laura of her hopes of Brian’s life after death. “The delicacy of a flower, a flock of birds, a sun set, fireworks, an ant, a painting by an old master…He must be having so much fun.”
A year after Brian’s death, Laura began to feel like it was time to go back to work. She accepted a job working at a local public preschool, where she works with other children with disabilities. Laura said helping others is a great way to honor Brian’s legacy.
“I’ve learned a lot from the children,” she said.
Still, some days are challenging for Laura and her family.
“I had a dream visit recently. Brian was lying with his head on my pillow. You know when you are so close to your baby that you inhale what they exhale. We did that so many times,” Laura said. “I would lie next to him and wrap him up in my arms and cuddle up. He was just there, the warmth of his presence filled me up. He was smiling that sweet little smile that means contentment. We just stayed there for a while being with each other then I faded into wakefulness. Tears filled my eyes when I realized he was gone.”
Currently, the McDonalds are doing well, and are moving forward while holding onto Brian’s memory.
Recently, Laura visited Brian’s grave and found an unexpected item at the gravesite: A GI Joe figure. “I knew that it was from James,” she said, of Brian’s brother who apparently made a visit, as well.
“It still hurts, but I just feel like Brian was such a gift,” she said. “We mourn, but we remember and appreciate his life and what he gave to us.”
A child’s smile is enough to brighten anyone’s day. For parents of a child with Cerebral Palsy – even when non-verbal – all of those firsts – whether reading, writing, or hearing a child say “I love you” are not only possible, they’re probable. More so than ever children are re-conceiving how they can participate and interact with others.