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)

 

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16 Responses

  1. Stay strong! It sounds like your doing great with this whole deal. Sincerley, Brian (brain injury for me as well)

  2. i too have a son name rj who suffered traumatic injury oct 23,2010 a night i will never forget as i was told my son was in a car accident thingkign we were going to middlesex hospital in ct,as i figured he broke a leg or something i was still scared for a month i fell something not good,like a premonition,but i didnt know wht it was about,my youngest son cory told me we had to go to new york,i was why new yhork,no answer,when we got there and they finaly let me c my son,i thought he was dead,they had started his b/p in his main artery and a cuff on the left,his brain was swollen,and blood from it was in a bucket,they had to do a trach,he b/p was over 103,they had to put him on ice,he kept on getting infections after infections,he looked that he had died,i had to step out of there screaming,and sick to my stomach this is the child that i had raised by myself in a hospital bed motionless,i was told he had minimum brain activity he would be a quad,not know who i am and might not open his eyes,that was the worse thing a mom would here after 2 months they was no improvement or progress and he went to rehab in new britain ct,after 2 months same prognosis,they decided to put him in trans unit i was against it as i looked at the other patients and sai dmy child doesnt belong there,how is he ever goign to open his eyes in such a depressive environment to make a long story short trans unit was the best,best rn,cnas that love him as he was theyre sons or brothers,after a while he finally came out of the coma cna rn were wairinf 4 me 1 day and i thought the worse,they said marie rj open his eye as the other one has nerve damage i couldnt stop crying that was my mircle son he had a feedng tube,catheter,trach,was terrible he is been there a year and a half and its so slow but i do beleive in miracles it takes for ever for the brain to ill,he is getting pt.ot.and speech therapy,he will not be the same but he is alive and i thank god for that where there is life thered is hope take it from a mom that has been there ,still leaves and still has very bad nightmare,li wanted to share my story ty,we have a long road ahead of us.

    • Thanks for sharing Marie. Sometimes it helps us more than others to share our stories. I’m sorry about your son and will continue to hope for a miracle. It sounds like the place he’s at is good and caring and that’s comforting. You’re in my thoughts.
      ~Pam

  3. Thanks for sharing Melissa’s story, Pam. Abuse to children is perhaps the greatest of crimes deserving of the greatest of punishments. Although many offer a plethora of excuses for inexcusable behavior like poverty, mental illness, their own abuse as children, anger issues…there is no excuse to injure an innocent. I am grateful to the universe that there are kind and sincere people who step in and show true love and caring.
    I believe in neuroplasticity and the brain re-wiring itself. I have witnessed some with Adam. The wounds of trauma are so deep that before the body attends to the physical it must attend to the spiritual first. Those wounds take many many years of love and commitment to heal…you are far along that path with Melissa and who knows what future healing will hold…there is a hope and knowing. Your path is right and true!

    • Thanks Phil for being one of those who help me hold on to the hope of things continuing to improve. I recently asked our neurologist about neuroplasticity and what we could do from here…this far into or after the initial event. You can probably guess his response…something along the lines of that’s all a bunch of bs and don’t waste your time because none of this has been proven (blah blah blah was what I actually heard). At least I know now where he stands and I know this is up to us from here on out. I look to others now who have been down this road and the approaches they have used.

      • Perhaps as a Xmas present you would want to give you neuro a book called “Cerebral Reorganization of Function After Brain Injury by Levin and Grafman…it might be too technical and scientific for him/her LOL. Keep believin’; the best medicine.

      • Well I go see him in an hour…I’ll recommend that one Phil. Why do I get the feeling I’ll hear blah, blah, blah again?? lol
        But, I’m going to pick that one up 🙂

      • Why are you still going to this doctor? Find a new neuro that is open-minded and is willing to work with you. You do not deserve that
        treatment from anyone. Run don’t walk away.

  4. Pam, thank you so much for sharing Melissa’s story. I agree with Phil, in that there are spiritual/emotional wounds that must be attended to before the body can give any energy to other things.

    This stuff HAS BEEN proven. IT WORKS. What does he not understand about the brain IS plastic!! However, neuroplasticity does have its limits. No one knows what these are and it is different for each case. Only you and Melissa can determine what is possible by trying. If one thing does not bring results, try something else.

    When I plateaued, I knew that it was time to move on to something else. Never give up. The brain is capable of changing every minute of everyday.

    The world is a better place because of people like you. Blessings.

    • Thanks Debbie! I finally found your message in my spam folder. THanks for all you to to raise awareness on this topic and for sharing your own personal journey. It has helped us, and I’m sure many others! We never plan on giving up. Much love!

  5. to express truthfully, we must face what most choose to hide. taking no risks may be safe but offers no chance for growth or deeper understanding. to express our truth, we scale the mountains of fear, battle the dark, reach the top of our mountain and shine light on the path for all others. thank you melissa, pam and your beautiful family.

    • Thanks Lynn for speaking your truth. What you say is true, but it takes bravery and thoughtfulness to do. I’ve learned sometimes the risks are worth it when there is something for others to learn. Much love to you 🙂

  6. HI Pam, Do you live in the Orlando, Florida area? Because I would love to work with Melissa. My most current studies of Access Consciousness (Bars and body classes)may be helpful.please let me know even if you live far away we can work out some way.let me know.:)))) Susan . . “

  7. […] 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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