Tag Archives: FAMILY
This May, my dear friend, Franco, had a sudden and severe series of aneurysms. He was 50 years old. It seemed fair to assume he was in the middle, not the end, of his life but of course, you never know. What we did know was that a few months
Less than two years after Anne got married, her husband’s parents called with the news that his sister had a rare brain disorder and he might too. At first, the news changed everything. And then, in a lot of ways, it changed very little.
Pete’s sister, Bonnie (not her real name) had been diagnosed with Cadasil, an inherited condition in which blood vessels to the brain become thick and congested. Usually migraines are the first sign that the brain is trying to make due with a reduced blood supply, typically around the age of 30 or 40. Anne’s sister-in-law was 48. Her diagnosis came after a period of train-stopping migraines and an MRI that revealed early brain damage.
For several years after the diagnosis, Peter watched his parents’ world revolve around his brother. Plenty of second-born kids grow up in their older sibling’s shadow, but try having an older brother with autism. Peter had just turned 1 when his parents got word of TJ’s diagnosis. And, as Peter is quick to point out when things don’t go his way, “It’s not fair.”
Looking back, his mom, Lauren, agrees. It wasn’t fair that Peter had to sit on the sidelines for several key years so his parents could focus on TJ. As Peter formed his first words, his parents lived in fear that TJ would never do the same. When other kids played at the Gymboree, Peter stayed home so a legion of specialists could play games with TJ.
Lauren started to notice things when her son was about 2 years old. She and TJ were regulars at a playgroup of kids born around the same time. This allowed the moms to compare notes as the kids started to sit up, crawl, and walk. “It was so interesting, just to see all the different kinds of development taking place,” says Lauren. “And TJ was right along with them.”
And then his path started to diverge. He would start crying in the middle of playgroup for no reason. Sometimes the cries escalated into screams and Lauren had to scoop him up and get them both home. Then the other kids started forming words, but no words came for TJ “And that’s how I first noticed that he was different and how something might be wrong. That’s how it started for us.”
In total, Donna and Laurie spent three weeks at the Cleveland Clinic. Both describe the first few days as agony. The surgery left Laurie in pain and hooked up to a superhighway of tubes. Donna ticks them off like a grocery list: a chest tube, a catheter, an NG tube up her nose, and an IV tube in her jugular vein. Every time she saw Donna, Laurie would tell her, “I want this stuff off.”
Kids of nurses have it both good and bad. Donna remembers her middle daughter saying, “Try being a nurse’s daughter — it’s really fun. Unless you’re bleeding from every orifice, she doesn’t care.” Laurie did not bleed from every orifice but she definitely got her mother’s attention.
This is the story of my cousin’s curved spine, and the surgery that made her upright. I told it before, from Laurie’s perspective. Now it’s time for her mother’s side of the story.
The first sign was pain. And constant reminders to stand up straight, not slouch. At first she thought she was just lazy, otherwise she would have better posture.
By the end of high school, my cousin, Laurie was in pain every single day. From after lunch to the end of the day, her back and head ached. At her mother’s insistence, she went to a doctor. And then another, and another. “We went to 7 or 8 doctors, and they all said I had a curve in my spine.”
When my mom fell on an icy ski run (a double black diamond as she recalls) the doctors in the emergency room told her she had a broken right shoulder. The following week, a doctor back home told her she’d also fractured her left clavicle. Not only that, the two pieces of her broken shoulder were moving apart instead of together. Welcome to the medical establishment, Barker family.
Most surgeries are not emergencies, according to the Agency for Healthcare Research and Quality. This leaves most families time to ask questions before agreeing to a procedure. But when it's your own family member, it can be hard to know what to ask.
Family stories give teenagers a firm footing in the world. Researchers surveyed 66 families with kids aged 14-16 for a study published in the Journal of Family Life. Teens who could correctly identify where their parents went to school or how they met were less anxious or depressed, and less likely to act out or disobey their parents. Apparently, stories about parents and grandparents help form strong identities.