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My blog is titled Permission to Tell the Truth in an effort of honoring my feelings, not denying them. The actual act of truth telling is challenging. It hurts. Here we’ve established a relationship of trusting support. I’d like your continued permission to be open and real.
While my thoughts should have been carefree during our summer vacation at our favorite North Carolina beach, each day as I took in the vastness of the ocean, I was reminded of the far reaches of traumatic brain injury (TBI) and grief.
My name is Nicole Bingaman. I am a mother to three sons, all in their twenties. Our oldest son, Taylor, suffered a catastrophic brain injury seven years ago. There are some hard truths I’ve discovered about myself over the years. Please know some of them require great courage to share with you.
A gentleman asked me, “Looking back at the beginning of your journey, what could have been done on the healthcare team's end to help you?” Taking a deep breath, I realized the question was an open door. I wasn’t sure I felt fully prepared to walk through it. I’ve pondered this question since then and want to share five qualities of healthcare providers that left an impression on me.
Something that I talk less about these days is how brain injury still affects me. And there are times, times like I am about to share, that brain injury still rears its ugly head, and leaves me completely bewildered and baffled.
These words are part of my caregiving truth. Even though they are messy and imperfect, they are full of love. For you. For me. For the caregivers dealing with moments they can’t bring themselves to share, or those who want to cry, but find their tears have run dry.
Finding acceptance after a brain injury isn't easy. "For a long while, I bucked against our reality. I found myself caught between what I had once known and an uncertain future. The in-between caused marked turmoil. As much as I didn’t want to accept Taylor’s brain injury as part of our lives, it is. As much as I wish it didn’t affect Taylor and our family … it does."
Taisha Rios shares her story about loving and raising her son Yael and how their lives were dramatically changed by an accident. She discusses behavioral challenges, the impact on Yael's confidence, school accommodations and more.
Amanda Stombaugh shares how she managed through the trauma, her daughter Ashlyn's rehabilitation, managing the behavior of a young child with a severe TBI, how to practice self-care while parenting three children, communicating with Ashlyn’s school, helping Ashlyn with social situations, and more.
If you were to look into the windows in our house of life, we would appear to be a “normal” family, but the reality is, we don’t feel normal. Most days are spent figuring out what will help Kyle on that day; how can that brain of his be calmed.
Some may question the morality of lying. As I moved deeper into my new role as a caregiver, I reached out to learn as much as I could about caring for someone with mom’s type of brain injury. My mistruths are categorized as Therapeutic Lying.
It’s time for a broader, braver dialogue around gender and caregiving. It’s time to start talking about the transformation in identity that occurs when one spouse adopts the role of the other. It’s time to recognize that caregiving is a role that requires the revision of gender norms and the acceptance of power transfers.
In August, we were presented with both high and low points. Our son, Taylor, was able to attempt to return back to work two days a week. Within fifteen days of returning to work, Taylor lost his brain injury service waiver. We had to hope nothing happened. And then…it did.
I wish I had found Alix Kates Shulman’s memoir "To Love What Is: A Marriage Transformed" in the first month of my husband’s severe TBI, and yet I may not have absorbed it the way I did reading it fifteen years post-injury.
When a service member is deployed the spouse is everything: head chef, accountant, mechanic, troubleshooter, problem solver, mother, father, good cop, and bad cop. Their job is moving from a dual parent role to a single parent role and back again, constantly. The challenge is that this takes some getting used to for both the spouse and the service member.
Brain injury has changed you. It has broken you, rebuilt you, strengthened you, and humbled you. Sometimes it does all of this in the span of one day. I don’t know that I have the words to make this journey easier for you, but I can offer this...
We’ve all see that face. The well-meaning face of pity: the downturned brows and lips, the misty eyes. After Hugh’s TBI, I seldom met a friend or acquaintance who did not flash this expression at me every time we met. My daughters felt it, too. The funny thing is, we did not want pity. We’d had our fill of it in the ICU.
The truth is, all family members are both a source of joy and a burden at one time or another. That’s what family life is: the art of weaving webs of joy between strands of pain is what creates the intricate fabric of family love. It’s not the people in our care who burden us; it’s our anger over circumstances...
How do you love the man who can’t express emotions the way he did when you first fell in love with him? How long do you continue to gaze into eyes that don’t see your heart? How many times do you say, “I love you” to someone who doesn’t respond?
First word, first step…you remember! Our plan included helping our sons through their “normal” firsts: high school, college, career, marriage, and children. Nowhere on our “normal” firsts list was finding ourselves sitting by our son’s hospital bed praying that he would live.
When to stay? When to go? When to get professional help? These are some of the hardest questions we will face in our post-TBI lives. These are gut-wrenching decisions to make. I know that not only from my own experience, but from the network of caregivers I communicate with everyday.