Our Daughter’s Journey: A Story of Traumatic Brain Injury (Part II: Grief and Loss)

This is the second part of our daughter Melissa’s journey through traumatic brain injury (TBI). Part one can be found here and is the beginning of this journey. In this section I address grief and loss, and how and when that occurred for me. Grieving is a funny thing (not literally funny), because just when you feel you’ve reached the end, that place of acceptance, you may suddenly find yourself back at one of the earlier stages. “What a long, strange trip it’s been” (thanks to The Grateful Dead) are the words that come to mind when I try to express this part of the journey (and this may be the hardest time I’ve had expressing anything). I write this at the risk of angering some people, but I can live with that. These are my simply my thoughts.

The words grief and loss just go together. When loss occurs, grief follows. Most people automatically associate grief with loss of life, and that is certainly a valid assumption in most cultures. But, any type of loss brings with it a death of sorts, and with that “death” comes grief. Loss wears so many faces outside of death such as chronic illness, new medical diagnoses, catastrophic injury, moving or other transitions, job change, and so much more. Traumatic Brain Injury is a major loss, and grief naturally follows for both the injured and those who love and care for them. The injured most likely will never be the same person again. Something changes, even if it’s minor such as a realization of the value of life. Many times, the changes are life altering, and profoundly effect the individual’s ability to function as they did previously. That old person is gone, and a new one emerges. This is not always tragic or horrible, but a time of adjustment, relearning and acceptance.

“Bereavement is a universal and integral part of our experience of love.” ~ c.s. lewis

As I noted in Part I of this blog, we began our journey through TBI at a different place than most people. Melissa’s story started for us when she was seven-and-a-half-years old, more than five years post injury. I remember the first visit our social worker made to our home after Melissa’s placement. She asked us if we had grieved or were going through the grief process, because this was a tragic situation. I thought to myself, grieve what? What am I supposed to be grieving? I didn’t feel any grief. I felt elated. Melissa no longer lived in an institution, no longer was force-fed unnecessary sedatives, she was part of a family who was thrilled to have her home, and she seemed filled with happiness, wonder and a thirst for life! She brought us an equal amount of joy, and while we were all making a transition, and figuring out how we make this new family situation work, we certainly were not grieving!

If you haven’t been through an adoption home study you may  not understand what I’m going to say in this paragraph. Home studies can be grueling. They pry into your private life in ways, and for reasons, I still don’t understand (and I’ve worked as a Social Worker in adoptions). So, after awhile you tend to have your guard up, and analyze each question they are asking and begin to wonder, what it is they are really asking. It’s not actually true (I realize now), that there is a motive behind every question that was specifically asked, though I had my suspicions at the time. Therefore, when our wonderful Social Worker (who was not doing anything but being considerate), asked if we were taking the time to grieve, I assumed she meant we should be, and so I answered what I felt she wanted to hear. Of course we’re grieving! And when she left I asked Ron what we are supposed to be grieving. He didn’t know either.

So, we carried on, getting to know Melissa, placing her in an appropriate school, meeting with her new doctors, specialists, occupational, physical and speech therapists. We were busy buying equipment, getting haircuts and new clothes, and adjusting to life with a third child; one with special needs we didn’t quite understand yet.

As we got to know Melissa we learned many things we otherwise would not have known,  and gained an understanding of a world and culture we never knew existed. I learned about special equipment, the inflated cost of everything containing the words special needs, therapies, surgeries, specialized equipment, devices, toys, and clothing. I also learned about judgment, ignorance, how rude, bold and/or cold people can be. I learned how to find joy in small accomplishments, and value in every person. I found sadness at times for what had happened to Melissa, and anger at other times for what someone took from her, but I still did not feel as though I was grieving.

“An event has happened, upon which it is difficult to speak, 

and impossible to remain silent.” ~Edmund Burke

Specialists identify different stages of grief, and have anywhere from four to seven stages. It doesn’t matter to me how many stages there are, or if I passed through each of them or bounce around and about within them. I know they start with denial and end with acceptance. And I know there is no easy way to make it through, no shortcut or avoidance without pain. We live in a society that wants to believe we should side-step pain and go directly to positive thinking, skipping grief, and get on with life. This doesn’t work, unless of course you choose to live in denial. Good luck with that if it’s your choice.

I don’t think I was in denial. I believe I just accepted that Melissa is who she is. We met her after her injury, fully knowing what her injuries and challenges were. This to me, was full-blown acceptance. I had arrived already. No need to grieve, no stages for me, no loss, nothing like that. I’m good, she’s good, every human is perfect just the way they are. I believed that.

And then it happened.

“The cycle of grief has its own timetable.

Until that cycle is honored and completed we are moving along life’s path

with an anchor down.” ~Ann Linnea, Deep Water Passage

Melissa has two siblings from her birth family. They were separated at a young age and raised in different homes and families, but through the small world of the internet all have found each other now. I first “met” them through Facebook. It was there that I saw their pictures for the first time, their families and children. I was so happy to have found them, and to introduce them to their sister. Some of the similarities between them were amazing; their faces, eyes, hair, and smiles. Their differences were striking as well. Suddenly I knew this feeling known as grief. Completely unsuspecting, it hit me like a ton of bricks! Her sister and brother are independent individuals who have the ability to choose what they do, how they do it, and what direction their adult lives take. I’m sincerely happy for them! But, I grieve for Melissa; her inability to make her own choices, the “perfect” unscarred beauty they possess that was her birthright, and the independence she lacks.

Don’t get me wrong; I’m happy for her too, and she is a happy, free-thinking spirit who I think is beautiful! But, what was taken from her on that winter day in 1986, forever changed who she was, who she had the possibility to become, and the freedom of choice I so deeply long for her to experience.

Grief and depression are not the same. But I felt sadness and it felt like depression. I was hurting and did not know where to turn. I traveled this road alone, because, who, at this time, decades later, would have imagined I would be grieving? I have a couple friends who have grieved the loss of a child, either by death or injury and I turned to them. This feeling finally started to make sense.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

~Elisabeth Kubler-Ross

And so I thank those who have faced grief and come out as beautiful people, who have loved and loss, and open their arms and their hearts to sharing with others, so others will find their way through this maze of feelings. I am grateful.

If I had turned to my spiritual friends I fear they would have told me that everything happens for a reason, that Melissa does have choices, perhaps she made a choice prior to coming into this life. Her job here may be to teach me what I needed to learn. They may be right, if this is truly what they would have said. I don’t know. I didn’t ask, because I didn’t want to hear that argument. As humans, I feel we need to experience a full range of emotions, and if we choose not to we will suffer. I believe suffering is optional, which is why I chose to fully grieve.

“I have found the paradox that if I love until I hurt,

then there is no more hurt…only love.” ~Mother Teresa

I’ve forgiven, adjusted, learned, and accepted–many things. I am on the other side and back to where I began on this journey. Melissa is my greatest teacher and truly an angel. She is beautiful, whole and perfect. I did not know her before, but I love the person who has emerged, and who she has become. I do not wish to change her. Do I hope for her to continue to heal? You bet!

Just trying to express, Pam

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4 Responses

  1. Thank you for sharing so honestly and openly. I believe, when we do we heal ourselves and extend a hand to others to allow them to do so.

    As you have shown, grief can come at any time and for many things we may not even think we need to grieve. I am glad you were able to recognize it, express it, and describe it us.

    Beautifully written, and I love your use of the quotes.

    • Thanks Debbie! I imagine you’ve done some grieving of your own. You are such a testement (where’s spell check when I need it?) of the true survivor who came out on the other side of this with so much to offer the world. Keep on giving people hope and sharing your positive message!

  2. Beautifully written and expressed…grief is so hard to talk about. I have not gotten to the other side, perhaps never will and that’s ok. I read a book which helped me nd I’ve once written about it: Chronic Sorrow by Sue Roos…a brief share:

    “While chronic sorrow is conceptualized as being normal and understandable, there are no formal and customary social supports and expectations, rituals or recognitions of the catastrophic loss, since the person who is the source of the loss continues to live. Adaptations are usually drastic and disorienting. Simultaneously and absurdly, the person who is the source of the sorrow may at times be socially unrecognized, as if he or she does not exist. If there is no existence, there is no loss; therefore the grief is unacknowledged and unaddressed by society.” p. 29

    I hope many people read your message of hope and really understand and integrate..

    • Phil,
      That is a powerful piece you shared from the book. I’ve never heard it put better. It’s so true and so sad, especially the part about being socially unrecognized. Wow! That speaks volumes and perhaps I’m not really at acceptance. I question that at times, but as I said, I began at a different place. I understand (as best I can) that you and I come from a different beginning. I did not lose a child in the same way you did, and I can’t imagine what that feels like. There is still that loss we both share of who the person used to be, the potential that was whatever you dream in your head for it to be, hopes, dreams, independence, choices, and that deep loss–the societal isolation and unrecognized reason for grief. I believe it probably is a life long road for most people, and the tiring fight for our children to be treated well, deemed worthy and valued in a world that values youth, model-perfect beauty, bodies, wealth and power as the driving force of all that is good. I just continue to believe in purpose…mine and my (socially unrecognized) children.

      As far as having many people read this message…no, this has not been well-received. I’m speaking on a topic most people don’t want to hear. Ignore it and it will go away? Pretend it doesn’t exist? I don’t know. But I’m pretty sure it won’t be going viral any time soon. I can live with that.

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