Norma and Steven, 2017

Upon hearing the words, “You are going to be a Mom,” I immediately started counting down!  There’s the due date, followed by the infamous recording of every first!  First word, first step…you remember!  As time marches on, in what felt like a blink of an eye, we were parents of young adults.  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 22-year-old son’s hospital bed praying that he would live.

Our only children Aaron and Steven were involved in a car accident in August 2012.  Upon hearing that our son Steven sustained a severe Traumatic Brain Injury (TBI), our focus was on his survival, not on what the life changing diagnosis held for us.  Ashamedly, I admit that until TBI happened to us, I was not educated enough to understand that we would be going down the path of awaiting firsts all over again.  Fragile life and death firsts.  Life, as in, will Steven survive? And death: our firstborn son, Aaron, didn’t survive.  Hearing Steven’s diagnosis coupled with Aaron’s death, blew our hearts, minds, and bodies with shocking firsts we could never have imagined.  This kind of catastrophic news happens in movies, not in our ordinary life!

When asking medical staff about Steven’s outcome, the unequivocal response was, Every Brain Injury is different. It’s too early to tell.” We weren’t asking about possible deficits; we only needed to know if Steven was going to wake up.  What if I never heard Steven call me Mom again?  The thought caused my heart to skip a beat and my brain to radically recalculate as I hoped for a different outcome, and this hope sprang against the reality that I would never hear Aaron call me Mom again.  How could I accept such a hard calculation? I didn’t. Instead, I rebooted and shifted my focus to Steven.  He needed me, and I needed him!

I have learned that being in shock can be a life saver.  For me, it provided a protective coating of armor around my heart, the kind of protection necessary to prepare me to see Steven through TBI firsts—the kind of firsts that brought a different level of joy to my heart and tears to my eyes, versus newborn firsts.

The most grueling first as parents happened several weeks after the accident when Steven’s doctor gave his approval to deliver the news of Aaron’s death to Steven. We were not equipped to speak those horrible words any more than Steven’s ears were prepared to hear, his fragile brain to process or his tender heart to receive.  In the stillness of that room at the Shepherd Center with my husband by my side offering a sense of strength, I held Steven’s hand, and as my voice threatened to leave me, I whispered to our son, “Steven, you have been asking about Aaron and why your brother hasn’t been to visit you.  I need you to listen to me. We need to talk to you about the accident. I know you don’t remember, but Aaron was with you.  I don’t know how to tell you honey, but Aaron didn’t make it…he’s gone.”

Without an audible response, Steven’s grueling expression told me that his heart was breaking in a way that he would relive for the rest of his life.  The kind of heartbreak that reminded us once again that we would never be the same.

Unless you have been touched by the messy world of TBI, doubled with losing a child you aren’t expected to understand that becoming Steven’s caregiver saved my life.  The pain from losing Aaron was excruciating enough to cut off my life sustaining air supply. I will always remember the shock of seeing Steven in the Emergency Room.  The medical professionals tried to prepare us, but despite the most prestigious credentials, how does one do that?  They can’t!  As soon as I saw my unrecognizable son, I knew that I had a life sustaining purpose.  Knowing that my son needed me gave strength to my buckling knees.  No matter how crippling the agony of our reality, there was no way I was going to miss witnessing Steven’s miraculous comeback.  What a show it has been, especially from the front row seat!

In August, it will be five years since our lives changed.  Steven has bravely fought his way through recovery.  He conquered every first with the ferociousness of a young man that ultimately knew his parent’s survival depended upon his own.  Upon hearing the devastating news of Aaron not surviving, Steven made a determined promise of not giving up to his brother.  He has gone above and beyond to keep his word.

We have celebrated Steven returning to college, hiking his favorite trail, getting back behind the wheel, becoming employed and, most recently, swimming in the ocean for the first time since before the accident.  During our recent family vacation in the Outer Banks of NC; where our sons spent countless hours together, I watched Steven approach the ocean with confidence.  For selfish “needing to protect my son” reasons, I offered Steven every excuse to stay out of the ocean.  Steven smiled, offered reassuring words that did not reach my ears, and he enjoyed the ocean.  Meanwhile, I stood frozen in the sand, praying to God to protect our son.  As Steven enjoyed the healing ocean waves, my heart was being assaulted by emotional waves of the relentless WHAT IF’s?  I was proud of Steven for stepping out of his comfort zone, ultimately causing me to do the same.  I know he was more than ready to be in the ocean long before that moment. More times than I have been aware, he has been mindful and protective of his mom’s fragile heart.

Our journey has taught us many lessons.  Among the top of the list is not expecting others to understand what we are going through.  People don’t know what to say. It’s okay. We don’t always know what to say.  We are repeatedly told that we are admired. Often, those words are followed by an awkward hesitation.  Allow me to finish the sentence, “We admire you, but we don’t want to be you!” Agreed!  No parent should outlive their child, doubled with navigating the unpredictable diagnosis of TBI.

Our desire is, instead of being parents that remind you of your worst nightmare, may we be a reminder that when trauma strikes you won’t feel prepared!  You will freak out!  You will cry until you think you can’t possibly produce one more tear.  You will scream at the top of your lungs, “I can’t do, this!” But, there is good news!  God designed us to be protectors of our children. In times of need, we dig deeper physically, emotionally & spiritually than we think is humanly possible to be present for our children, our husband, our family, and friends.  You can survive even when you think there is no possible way!

Through our journey, we have become super-glued as a family with understanding and respect of how the unwelcomed knock on our door has and will continue to affect each of us differently. There’s no “one size fits all!”  We acknowledge that our family, friends, and community have been affected.  We are blessed by the ones that have stayed and understand when others couldn’t.

The welcome back mat is always out!

My heart hurts for everyone that has been touched by our journey. We understand the pain you have felt.  On the days when our emotional tanks were empty, we found strength from your love and support.

We know there will be more firsts, some welcomed, others unwelcomed.  I admire Steven for not allowing TBI to define or limit him.  I have lessons to learn from him as I often find myself feeling defined by my losses.  I am told that these feelings go along with the identity crisis that is experienced with a life-changing event.  This certainly meets the “life change” event criteria.

It’s my choice each day to decide if I will drown in my losses or be thankful for what’s right in front of me, I can learn and grow from both.  Despite what happens to me, ultimately, I decide whether I dwell in the ugly or live in the here and now, in which, despite all losses, beauty can be found.  It is in the dark times that the light of family, friends, and community shines the brightest.

Instead of getting lost in the dizzying doom and gloom of my circumstances, I strive to rise above, be present for my family and be willing to help others that are hurting.  Daily, I will continue to honor Aaron’s memory, celebrate Steven’s life, and thank God for the blessings that are right in front of me.

Posted on BrainLine August 14, 2017.

Comments (4)

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Norma, I am sitting here in an ICU unit with tears streaming down my face, for you and for myself. Our son and only child Hunter, 31, single, also an avid hunter, fisherman and outdoors fella, was in a horrific auto accident on Aug. 11th on his way to work. Two weeks ago yesterday. He has severe TBI. Every raw emotion you have experienced with Steven, I am enduring also. I cannot comprehend what losing Aaron was like. My heart goes out to you and your family from the bottom of my heart. I am still shell shocked by Hunters injuries, and crippled by fear of the unknown, I have been unable and unwilling to leave his side. If I hear those words..."every brain injury is different..." one more time I will scream!!! I was given your name, number and email address by someone here at the hospital with your permission of course. My first thought was "every mother is different..." But after reading your blog! No!!!!! We are not different! We are alike! We are MOTHERS! We are wired to be warriors for our children, even when we don't know what we're doing! I pray for clarity and guidance daily, so far it eludes me...thank you for sharing your story. I pray it's God's will that my son achieves Steven's successes! God love your heart and bless your family.

Susan, thank you so much for your kind words. I'm so sorry about your son. I'm here if you want to talk. I'll be happy to come to the hospital. Please email, text or call me any time!

Norma - this moves me in so many ways. I am one of those that struggles to find the words when overwhelmed by circumstances. When I read your articulation of thoughts, emotions and events, I am transported to a place of standing in your shoes even for a moment. You have a gift - thank you for sharing it.

To my dear wife. This is the first article that I have made an attempt to comment on, not that I have not wanted to, but I am not good at words nearly like you. This by far is the article that has best caught the raw emotion of our last 5 years, and I would like for the readers to know that I know of no stronger Mom on the planet than the one I am married to. You have shown what it means to live and love unconditionally and for that I am most proud of you for! Norma, you are an example to so many (including me), and you have taught me and others how to be an advocate for our child or love one with TBI. Promise me you will never stop writing (your gift, not mine), and continue to help others when they think they can't go on or there is not hope. You give HOPE new meaning. Love C.