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

Our Daughter’s Journey…A Story of Traumatic Brain Injury (Part I)

I sit here at my computer contemplating hitting the “publish” button with tears in my eyes and heaviness in my heart. Writing and rereading this was difficult to do, but a reminder to me and my husband of why our daughter is here with us, and why we continue to do what we do, fight for what is best for her, feed, bathe, clothe and care for her every need daily. It is because we love her with all our hearts and promised to always keep her best interest in mind that we continue on this journey with her by our side, in our arms, our heart and our home. Melissa, “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” (quote from Love You Forever by Robert Munsch)

I still remember the day our adoption Social Worker asked us to stay after class because she had a matter to discuss with us. Given no more information, I sat anxiously through that two hour class, dreaming up all sorts of reasons she may want to talk to us. Did we get a bad reference letter? Had she found some deep, dark skeleton in our family closet? Had we failed to meet some deadline? It was too early in the adoption process for a child to be found for our family. I just went to that dark place, imaging all the things that could be “wrong”.

The meeting passed slowly, my husband and I helped her clean up, and then we proceeded to her office. It was there she handed us a photo and read a little excerpt she had with limited information about a seven-and-a-half-year-old little girl living in an institution about 300 miles south of our home. I heard her say, she’s been abused and has a traumatic brain injury. It has left her paralyzed on her right side, she is unable to walk, talk or feed herself. She has epilepsy, a shunt and did I mention she’s blind? There, in my hand, I held a picture of a beautiful child with dark hair and eyes, and a big wide, heart-gripping smile. Yes, we’d be interested in meeting her. And, so our journey to becoming a family of five began.

Our story differs from so many others dealing with brain injury, because we did not know Melissa before her injury. We met her, knowing who she was, what the doctor’s expectations were for her, and all those things she did that others saw as naughty. She was a perfect match for our family! Still, her story does not come without grief and sadness, and hope and faith, and all those emotions that other families face. Our story just started at a different place.

March is brain injury awareness month, which is why I’ve chosen this time to tell my daughter’s story. I’ve been asked for years to share it, and I’ve chosen not to for many reasons. First, it’s her story, her personal journey, and I didn’t feel it was right to share without her permission. Melissa is nonverbal due to her traumatic brain injury (TBI), so asking if it is okay with her is not an option. Secondly, I have chosen to protect those who are innocent in this story, her birth family, and others who love her. Thirdly, I’ve chosen not to tell because it is extremely tragic, makes me sad and angry, and I didn’t see how sharing her story would benefit anyone. But, mostly I haven’t told because I wasn’t there, I don’t know all of the story, I’ve been told second or third hand, and pieced together pieces of the puzzle from countless hospital records, information given to me by professionals and people who have appeared in our lives who knew her previously. If any of her birth family feels they need to clarify anything, please do so, and know I have the utmost respect for you and your families.

I, finally, feel it’s time to share. I, now, understand that the only cure for brain injuries is awareness, education and prevention. I also understand that it is the only cure for child abuse as well. Her TBI is the direct result of abuse, at the hands of a man who walks free with virtually no punishment for this crime. I am not looking for revenge, but I do hope he has changed his life path. Too many years have passed to know where he is or what he is doing now, or whether he has injured anyone else. I just hope he has some remorse, and has taken a good long look in the mirror. Melissa does not hold anger or fear, and I walk beside her in that choice. She is my teacher, and she has taught me well. In an effort to protect her, I will not share the entire story, because it is too personal, too horrible, and not mine to tell. She has no way of telling me what to put in or leave out, so I am going to concentrate on the head injury because I feel that is the piece that has most profoundly changed her life, and because the TBI is what we are trying to bring awareness to this month.

On, what I imagine to be, a cold winter day, in January, 1984, a beautiful little girl was welcomed into the world by her young mother. In February, 1986, that little girl’s life would be changed forever. At just barely two years old she became another number, another statistic, another child lying in a hospital bed fighting for her life; the victim of someone else’s rage. Melissa was beaten on the head repeatedly, leaving her brain so swollen doctors had little choice but to take drastic measures, which included brain surgery, removal of most of the left hemisphere and debridement of the brain. The left hemisphere, typically, controls language and movement, among  other things. She wears the scars of that abuse still today, 26 years later. That walking, talking, visually acute, potty-trained little girl has never regained any of those milestones. Melissa is considered severely intellectually impaired, has a seizure disorder, is blind, and has right hemiplegia, meaning her right side is mostly paralyzed. She is unable to walk, talk, feed herself, and is totally dependent on others for most of her basic needs.

We met Melissa on a hot summer day, when she was seven-and-a-half-years-old, living in an institution in a small rural town five hours from the place she once called home. She became our daughter through adoption, and has forever changed our lives. Her smile and giggle light up a room, her spirit is full, and her determination strong. Melissa is a fighter, a survivor, brave, happy, and loves unconditionally. She has been my greatest teacher, and I have learned more from her than any other single person in my life.

After the brain injury Melissa was admitted to the hospital where she spent many weeks. She developed grand mal seizures and fluid in her brain. She had a shunt inserted to drain the fluid, and it remains until this day. She was also put on medications for seizures. A feeding tube was inserted at some point to feed her, which has since been removed. She also had a mesh plate placed on the left side of her brain, to fill the void where her skull once was. After her hospital stay she was transferred to a rehabilitation facility for another year to receive therapies. She made her way from institution to institution because she “was a behavior problem.” There is much evidence now showing the correlation between the two; brain injury and varying degrees of behavior changes. Many questions come to mind when I hear this: Was anyone there to hold her? Did anyone advocate for her? Was there anyone consistent in her life? Was anyone looking out for her best interest? Did she know love or feel loved? Was she given needed therapies and were they effective? Did all the transfers lead to her making less progress than someone who had consistent, loving care?

I have so many questions, none of which will be answered. The biggest question that remains for me is, why didn’t the other side of her brain pick up what was not able to be performed by the missing half? I have read so much about similar injuries, especially at a young age, where new pathways are formed in the brain and the other half takes over activities once performed by the missing half. We are still working on that puzzle piece. I do not feel her healing is over. I truly believe the brain can continue to heal for a lifetime, and we can facilitate much of that healing without medical or professional intervention. Building a new life after a brain injury is a lifelong journey; one we will continue to take as a family alongside our daughter.

(Part II: Later this week, will talk about grief and loss)