Our Daughter’s Journey: Decades Later

March is Brain Injury Awareness month and this post serves as a reminder that awareness is something that all of us are learning daily. Brain injury is often a hidden injury making it difficult to understand and treat. For the individuals and families who are living with a traumatic brain injury, awareness is an ongoing educational experience. We strive to bring awareness to those of you who have not had any experience with a TBI so that hopefully you can do your best to avoid it or know when and how to get help if needed. The TBI warriors I’ve met, the odds they’ve overcome and the fulfilling lives they are leading constantly amaze me. My daughter, Melissa, is one of them. She’s a fighter and a survivor, and my greatest teacher. If you want to read Melissa’s TBI story you can find it here.

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“As you’ve seen, her seizures will get rougher and more frequent. She has almost no muscle tone left, skin ulcers will develop because she has no muscle in her butt and sitting will become painful. Muscles control heart and lungs as well, and she’ll begin to aspirate more often. It’s typically infection or pneumonia that takes “them”. She’s had multiple fractures this year and bone density it being lost. Digestion is affected and she needs to begin taking something to help move food through her. Get her to the emergency room immediately if you see signs of shunt failure. Remember that’s a foreign object she has in her body. She’ll get infections more easily and once she gets them she’ll be prone to getting them repeatedly. She’s lost twenty pounds and we need to start supplementing with high calorie, nutrient-rich drinks before her weight gets to a dangerous low. Her brain is no longer functioning as that of a young woman, and the risk of dementia has increased. She could become increasingly agitated or combative in the near future. Things that didn’t bother her before may suddenly become frustrating and confusing. It’s probably her last decade. Her body and mind are like that of a woman in her sixties. Life gets really hard for “these guys” in their thirties and forties.”

I hear the doctor’s words as she describes my thirty-one-year-old daughter. Her tone is kind, but matter-of-fact. She is void of emotion as she carries on her exam.

It’s probably her last decade? She’s THIRTY-ONE-YEARS OLD”, I scream in my head. “THIRTY-ONE!”

It’s been twenty-nine years since her initial injury, which sent her to the hospital, and required removal of a large portion of the left hemisphere of her brain. She’s had tough stuff happen and she’s always adapted and made the best of it, getting through with determination and a good-natured fighting spirit.

Does the doctor think parents of a child like mine expect to hear this news? Maybe we should. I’m confused. Does the doctor know that most of us pass many of our hours, days, month and years wondering and/or planning what will become of our child when we’re no longer around to care for him or her? The table just turned, and I don’t dare speak the unthinkable.

I flash back to the doctor coming to see my mom at her last stay in the hospital when she calmly said, “It’s time to call hospice. Go home and live the rest of your days peacefully in your home among family and friends.” She was just sixty-three-years old. And that seemed too young. “Melissa is thirty-one…THIRTY-ONE”, I think to myself with an emotion I can’t quite describe.

I learned today this is what a severe traumatic brain injury looks like decades later. More specifically, this is what a TBI looks like for Melissa years later. Every story is different.

“Don’t be angry with the doctor”, I think. She’s simply the messenger and sometimes her message is not what we want to hear or she wants to speak. It may be the truth, but I also know she could be one hundred percent wrong. She could also be entirely accurate. No one really knows, but the truth is, Melissa’s seizures have increased and gotten much harder to control. Her muscle tone is gone, her weight is down, she is aspirating more often, she’s often confused and startles easily, sleeps a lot, and her happy-go-lucky attitude is nowhere to be found. I struggle to concentrate in that moment and the hours that follow that doctor appointment.

There are a few things I know for sure. Melissa still finds a little piece of joy every day. She loves lively music and conversation and being around people. All of these things will remain part of her days and we will continue to care for her in the best way we know how, with love, compassion and laughter.

As J.K. Simmons said as he accepted his Oscar, “Call your mom, call your dad. If you’re lucky enough to have a parent or two who are alive, call them. Don’t email. Don’t text. Call them on the phone. Tell them you love them and thank them and listen to them for as long as they want to talk to you.”

I’d say the same for parents. Call your kids—no, text them. They prefer that. And tell them you love them and thank them for all they’ve taught you and text back to them for as long as they want you to (which probably won’t be long). Just do it. Love to all of you.

Just me once again trying to express,

Pam

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