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The New Normal

Heidi Qua & her sons

Heidi Qua & her sons

Today’s blog is written by Heidi Qua, mother of Jacob and Eric. Her son Jacob suffered a traumatic brain injury, in 2004 when he fell from a third-story window. To read her entire story, click here.

A few days after Suspect Number Two from the Boston marathon bombings had been apprehended, I was speaking to a friend who lives in Virginia. “So, are things returning to normal now that the suspect has been caught?”  I laughed.  Normal? Things will never be normal again. We are entering a chapter of a “new normal.”

New normal is a phrase I used frequently when my then almost three-year-old son was discharged from the rehabilitation hospital, Franciscan Hospital for Children. In September of 2004 Jacob fell from a third floor screened window to the concrete courtyard below. He spent 19 days in NICU, 17 of which he was on a ventilator. Then we were moved to rehab where he, we, stayed for three more months.

When we were discharged, four days before Christmas, people assumed that we would be going back to our “old life.” They didn’t seem to understand that we couldn’t go back to our old life. My husband and I were trying to figure out our new life, our new normal. Rather than working full time, I was now shuttling my youngest child back and forth to therapies, and welcoming other therapists into our home.  I had to explain to my oldest son, Eric, who all these people were, and why his brother needed all this additional attention. We were trying to keep things normal for Eric, but even his life was forever impacted too.

As Jacob grew older, my new normal included monthly visits with different doctors – neurologist, physiatrist, or primary care doctor. The therapies continued, several times a week.  This is not what I call “normal.” As a young woman, when I thought about becoming a mother, I never thought “what pattern should we choose for my son’s AFOs (ankle-foot orthosis)?  Where can I buy shoes big enough to fit his AFOs?”  In fact, before Jacob’s accident, the world of rehab, therapies and AFOs was a world I had never given a second thought.

As much as I lamented my new normal, I realized I only had one option, and that was to accept it.  I actually started to appreciate our new life. Nothing was going to make Jacob “normal” again, and I was beginning to be OK with that. I fell in love with his funny little walk, or the way he throws a ball. Even now, at age 11, all I have to do is hear his walk and I know it is him. I realized quite quickly, back when he was in rehab, that Jacob is a hard worker. He never once complained about all the therapy he went through. To this day he is the hardest working guy I know. This past weekend he hiked over seven miles with a backpack on, carrying his camping gear. He fell down, 10 times to be exact, but got back up each time and kept going.

As we approach the nine-year anniversary of Jacob’s accident, I can honestly say I am content with my family’s new normal. I would be lying if I said I wish the accident never happened – no parent wants their child to suffer any injury, let alone a traumatic brain injury. That said, we have found victories in the small things, in the quietest of places, and we have learned to celebrate each moment with all three of our children, as we take this journey together.

#BrainInjuryAffects Heidi, mother of a brain injury survivor

Heidi and her husband David re-located their family from California to Massachusetts to teach and live at a boarding school. Both teachers, they work with children on a daily basis. However, their lives changed on Sept. 8, 2004 when their second child, Jacob, then 2 1/2 years old, fell from a third-story screened window onto a concrete courtyard below.

Heidi & her sons

Heidi & her sons

“When he first fell, a student saw it happen and ran to tell David,” Heidi explains. “Jacob then had a seizure during his ambulance ride, and the doctors immediately put an intra-cranial pressure device in because of the nature of his injury.” Jacob spent 17 days on a ventilator in a drug-induced coma so that his body and brain could heal with minimal movement.

Some early evidence of Jacob’s injury included an inability to speak due to the ventilator, and his cognitive abilities were not what they had been before the accident. “Jacob knew his colors before the accident. In therapy following the accident, he did not,” says Heidi. “He knew who his parents were, but he was lethargic and acted much like a four-month-old for a while. We called him a Raggedy Ann doll!

“When he left UMASS, we went to Franciscan Hospital for Children. I remember the first time I was able to discipline him again. Jacob was sitting in his crib, doing something I had told him not to do. —‘Jacob I asked you to stop, I need you to stop.’ Who would have thought disciplining a child would have been a great thing, but it was a sign of his recovery.” Jacob spent three months in in-patient rehabilitation at Franciscan. He was then in early intervention for six weeks. He received outpatient physical, occupational and speech services for two more years, as well as services in the school system. Even now, nine years later, he continues to receive speech therapy, and he just recently discontinued adaptive physical education.

Currently, Jacob is an 11-year-old fifth grader with hemiparisis on his right side, as well as some learning issues. “He had a neuropsychological exam three years ago by a woman who works with people who have brain injuries, and it was determined that he has some recall and retention issues,” says Heidi. “Anything with numbers, he remembers. But, if he reads a book today and I ask him questions about it tonight, he can’t recall specifics from the book.” Jacob is also fatigued by the end of the day, and is dealing with the emotional piece including impulsivity and anger. “Sometimes we aren’t sure if it’s the brain injury or just his age, since he’s moving into his teenage years,” says Heidi.

She says that her biggest frustration is that people do not realize how easily brain injury can happen. “Why don’t more people wear helmets? Or keep a couch away from a window?” Heidi and David advocate for helmets in activities like riding bicycles and scooters and skateboards. She wants people to become more aware of how easily brain injuries can happen.
She also gets frustrated by people’s perception of individuals with traumatic brain injury (TBI). “When people hear brain injury they automatically think, ‘quadriplegic living at home forever,’ when they could be highly functional individuals who just need our patience,” explains Heidi.

“Many injuries can be prevented. When your child is arguing with you about wearing a helmet, because it isn’t the cool thing to do, talk to them about the alternative. Of course you need to keep the discussion age appropriate, but as a parent, you do not want to be standing over your child in PICU, wondering what their future will be like. We have been there. We have seen other families’ realities – what life is like for them now. We were lucky – Jacob is highly functioning, and many people would never know he has a TBI. But you may not be so lucky. Brain injuries can happen very easily. Take precautions!”