Our Daughter’s Journey: Decades Later

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.

_________________________________

“As you’ve seen, her seizures will get rougher and more frequent. She has almost no muscle tone left, skin ulcers will develop because she has no muscle in her butt and sitting will become painful. Muscles control heart and lungs as well, and she’ll begin to aspirate more often. It’s typically infection or pneumonia that takes “them”. She’s had multiple fractures this year and bone density it being lost. Digestion is affected and she needs to begin taking something to help move food through her. Get her to the emergency room immediately if you see signs of shunt failure. Remember that’s a foreign object she has in her body. She’ll get infections more easily and once she gets them she’ll be prone to getting them repeatedly. She’s lost twenty pounds and we need to start supplementing with high calorie, nutrient-rich drinks before her weight gets to a dangerous low. Her brain is no longer functioning as that of a young woman, and the risk of dementia has increased. She could become increasingly agitated or combative in the near future. Things that didn’t bother her before may suddenly become frustrating and confusing. It’s probably her last decade. Her body and mind are like that of a woman in her sixties. Life gets really hard for “these guys” in their thirties and forties.”

I hear the doctor’s words as she describes my thirty-one-year-old daughter. Her tone is kind, but matter-of-fact. She is void of emotion as she carries on her exam.

It’s probably her last decade? She’s THIRTY-ONE-YEARS OLD”, I scream in my head. “THIRTY-ONE!”

It’s been twenty-nine years since her initial injury, which sent her to the hospital, and required removal of a large portion of the left hemisphere of her brain. She’s had tough stuff happen and she’s always adapted and made the best of it, getting through with determination and a good-natured fighting spirit.

Does the doctor think parents of a child like mine expect to hear this news? Maybe we should. I’m confused. Does the doctor know that most of us pass many of our hours, days, month and years wondering and/or planning what will become of our child when we’re no longer around to care for him or her? The table just turned, and I don’t dare speak the unthinkable.

I flash back to the doctor coming to see my mom at her last stay in the hospital when she calmly said, “It’s time to call hospice. Go home and live the rest of your days peacefully in your home among family and friends.” She was just sixty-three-years old. And that seemed too young. “Melissa is thirty-one…THIRTY-ONE”, I think to myself with an emotion I can’t quite describe.

I learned today this is what a severe traumatic brain injury looks like decades later. More specifically, this is what a TBI looks like for Melissa years later. Every story is different.

“Don’t be angry with the doctor”, I think. She’s simply the messenger and sometimes her message is not what we want to hear or she wants to speak. It may be the truth, but I also know she could be one hundred percent wrong. She could also be entirely accurate. No one really knows, but the truth is, Melissa’s seizures have increased and gotten much harder to control. Her muscle tone is gone, her weight is down, she is aspirating more often, she’s often confused and startles easily, sleeps a lot, and her happy-go-lucky attitude is nowhere to be found. I struggle to concentrate in that moment and the hours that follow that doctor appointment.

There are a few things I know for sure. Melissa still finds a little piece of joy every day. She loves lively music and conversation and being around people. All of these things will remain part of her days and we will continue to care for her in the best way we know how, with love, compassion and laughter.

As J.K. Simmons said as he accepted his Oscar, “Call your mom, call your dad. If you’re lucky enough to have a parent or two who are alive, call them. Don’t email. Don’t text. Call them on the phone. Tell them you love them and thank them and listen to them for as long as they want to talk to you.”

I’d say the same for parents. Call your kids—no, text them. They prefer that. And tell them you love them and thank them for all they’ve taught you and text back to them for as long as they want you to (which probably won’t be long). Just do it. Love to all of you.

Just me once again trying to express,

Pam

Advertisements

I Believe

Trying2Express Blog

Reposting because I STILL believe and needed to feel the magic of the season….

I pulled up to the Post Office yesterday and saw a man with a long white beard, thinning hair, wide and round around the middle and wearing a red shirt, suspenders and a broad smile on his face. I said to myself “It’s Santa”. He went into the Post Office ahead of me and took care of his business on one side of the building while I walked over to take my place in a very long line, where many of us were waiting with last minute packages to be mailed. I forgot about him while I was in line putting together the box I purchased and addressing my package. Then my attention was drawn back to him when he appeared in the area where I stood in line. In a very deep jovial voice he said “Merry Christmas Everyone”…

View original post 922 more words

Who is Your ‘Real’ Mother?

Adoption awareness month is coming to an end and I wanted to share this blog written by a guest blogger. As adoptive parents we hear our children asked this question so frequently, and our children hear it much more frequently. It can be a tough question to answer but the writer makes it so clear that children can easily understand. Hopefully this story will help parents also and open a conversation with your children, both adopted and not…

Trying2Express Blog

The following is the first in my series of blogs on the topic of adoption. This is written by a guest blogger who wishes to remain anonymous. I feel it’s the perfect story to open the subject, as it touches on one of the most difficult questions adopted children and families face. There are many ways to answer this question, but I feel the analogy the writer makes here is treated beautifully, with respect to all those involved in the adoption triad. The adoption triad includes birth family, adoptive family and child. I cannot express my gratitude enough to the writer for sharing one of her personal experiences which will hopefully shed a little light on a sensitive topic.  

Who is Your Real Mother?

Over two decades ago, my husband and I adopted a six-year-old girl from another country.  Since Elaina, as I’ll call her, did not speak our language, or look at all like us, or the…

View original post 770 more words

How It All Began

Because it’s Adoption Awareness Month I was looking through my blogs to repost a previous one on adoption. I thought this was it, but instead realized I veer off topic rather frequently. So, it all began with Melissa’s adoption and somehow turned into a massage. This was in the early days of introducing myself and my family, so in some small way it makes sense. It did all begin with adoption—that life-changing, redefining moment–the story of who I was and who I am today…

Trying2Express Blog

The decision to adopt was an easy one.   The process of adoption was much more difficult.  The bureaucracy, the agencies, the paperwork, the discussions, the classes, the prying into our personal lives, proved to be exhausting.  The final payoff though, was worth every agonizing moment. 

Our Social Worker quietly whispered to my husband and I that she would like to see us in her office after the group concluded.  “Could there be a problem,” I wondered?  “Did we get a negative reference?  Was there more paperwork?”  It was too early in the process for her to have a child identified for us. 

The class seemed to go on forever and the anticipation was growing stronger.  Finally 9:00 rolled around; we helped her straighten up the room and said good-bye to our fellow classmates.  We met in her office where she pulled out a note, which was tucked under other paperwork…

View original post 890 more words

Lost and Alone

“It’s not the load that breaks you down, it’s the way you carry it.” – Lena Horne

 I cannot begin to count how many people have contacted me asking what keeps me so positive with “the load I have to carry.” By this they mean parenting three children with developmental disabilities. I sit deep in thought each time one of these messages appears from people who describe themselves as overwhelmed, depressed, lonely and feeling guilty about it. For the most part these are parents of a child, or children, with developmental disabilities. Some have young children, while others are parenting their adult children who are unable to live independently.  These folks, typically moms, are burned out. Some have been burned out for years, often severely depressed, angry, fearful, anxious and socially isolated. They feel desperate and alone.

These folks love their children and would go to the ends of the earth to care for and advocate for them, making sure every one of their needs is met to the best of their ability. But they neglect themselves—or more accurately have lost themselves. They no longer know who they are because the child or children they care for has become the most important part of their existence.

 I relate to them. I feel for them. I am one of them. I have been there. I am there. I understand.

 I often sit in silence wondering how I will respond to their message. How can I lift them up just for this moment in time? What words of wisdom do I have? Typically they catch me on a day when I am struggling also. Perhaps I’ve just entered a quote on my Facebook status that is positive and uplifting and leads you to believe I live some super-human existence where sadness and grief do not exist. But, I’ve also noticed over the years that people post things on social media that they need to hear themselves. It’s how we justify or deal with our own emotions. Sometimes I say things not because I know better than you, or deal with situations better than you, but because I struggle—with you. I am you.

My own social isolation has changed me into a person I don’t know. It has also made me realize I have to be my own best friend. I have to lift myself up because the only other option is to sink—into a deep, dark hole of desperation and despair. Perhaps this seems overly dramatic. Ask any parent who is raising a child with special needs, especially one who needs total care if it’s exaggerated. Come spend a week in my house. You will learn a lot. You will learn survival skills that aren’t even considered on television reality shows. You will learn our strength and resilience.

 Although respite care may be available to these parents they may rarely use it to have fun or nurture themselves. Instead it is used it to do things such as grocery shopping, running errands or going to doctor appointments. Even if they have the time to do something fun, they often are without a support or social network. They don’t have someone to call and go out to lunch or spend an afternoon shopping with. They don’t know what is going on around town because they know better than to plan such things. Often financial resources are also a concern.

 For those who want to know what I do to stay positive all I can say is I am just like you. I am not upbeat all the time, but often I fake my way through. I have good days, great days, bad days and horrible days. I have no great words of wisdom, no magic potion to make your life easier. I have discovered that my thoughts are powerful and what I think about most is what I attract. That doesn’t mean you always have to be in a good mood, think positive and never get angry. It just means to let those things happen and then let them go.

 Moms and dads who are parenting a child or multiple children with special needs please know your value. We often spend so much time fighting for the world to see value in our children that we neglect finding our own value. Know that asking for help (especially from agencies and professionals) is ok—actually it’s essential. Trusting that help may be a bigger challenge. I know.

 Find a little time to do something for YOU each day. Maybe it’s simply finding a quote for the day that uplifts you. I’ve also learned to do things alone because I know how hard it is to find a friend sometimes during that tiny little window of opportunity you have to get out of the house. For many of us friends are difficult to have because we aren’t able to BE a friend in return. We simply don’t have the time. Just sitting at a Starbucks or local Internet accessible café, alone with your laptop, will help you feel connected to other people. I love it and it meets two of my needs: time alone and time with people.

 Also, try to get some exercise. You don’t have to join a gym or do an elaborate workout or hike to the top of a mountain, but move your body in some way because there’s a definite connection between movement and mood. Cranking some favorite tunes and dancing around the house can lift your spirits immensely. It may even make you laugh and what could be better than that? If you are unable to exercise perhaps you have ten minutes to sit alone in meditation to calm your mind and bring you inner peace.

 Most importantly find something to be grateful for each day. This is the one thing I found most difficult initially, but turned out to be the greatest gift to myself. If I can find gratitude each day for something small it makes the bigger, tougher stuff easier to handle. Eventually you may be able to find gratitude in some of the tough stuff too. Not always, but maybe. It’s worth a try.

I write this to you, my friend, who have reached out to me at some time for help or advice. I also write this to you, a stranger, who have never reached out, but are feeling alone and in need of a friend or professional. (I’m not a professional so still make that call). Most importantly, because I am you, I write this for myself. I need to know that even though I feel as though I’ve lost myself I still have value. I love my children and they have value and they are my passion. I need to always remember to find gratitude, time alone and time with friends. I need to feel connected and loved and uplifted. Much love to all of you and remember each day is a new beginning.

Just trying to express,

Pam

 

“And I don’t know what the future is holdin’ in store

I don’t know where I’m goin’, I’m not sure where I’ve been

There’s a spirit that guides me, a light that shines for me

My life is worth the livin’, I don’t need to see the end” ~John Denver (from Sweet Surrender)

 

https://www.youtube.com/watch?v=MJmH05xnUQA

 

 

 

 

 

 

 

 

 

Something Beautiful Remains

In the year 2007, Mother’s Day also fell on the thirteenth day of May. It was on this day I held a ceremony in my front yard. My brother, husband, children and I planted a tree in memory of our mother and father to honor them both on Mother’s Day, also the anniversary of the day my father passed away. We buried a few mementos in the ground around the tree for each of them, sprinkled some of Dad’s ashes on the earth, said a few words and released balloons with messages attached. Each day I would look out my window, with fond memories of my parents, as I watched the tree flourish and grow a little taller and stronger that first year.

The tide recedes but leaves behind
bright seashells on the sand.
The sun goes down, but gentle
warmth still lingers on the land.
The music stops, and yet it echoes
on in sweet refrains…..
For every joy that passes,
something beautiful remains

~Unknown

On the morning of May 13, 2008, exactly one year later, at the same time of day we had planted that tree, a freak, very brief, but violent storm, ripped through our neighborhood. It split the young tree right down the center, sending both halves crashing to the ground. Nothing remained of the tree. I glanced down the block, in all directions, but other than a few scattered roof shingles, nothing else appeared to be damaged. We filled in the empty hole with dirt and the landscape rock that covered the rest of the yard, and I spent many days after, gazing out my window, wondering why. I couldn’t help but wonder if it was a sign of some sort. Friends had theories, some I wanted to believe, others I dismissed.

We moved from that home a few months later, but remained in the area. One day I decided to drive by the house to see how the landscape was looking, if the new residents were using the feeders I had left behind for the hummingbirds, and just to get a glimpse of the place where my parents memories were buried in that location where a tree once stood. Much to my surprise the tree had started to grow again. It was messy and unkempt, growing odd and misshapen, desperately needing to be trimmed or cut back for a stronger foundation. I had to let it go, release my attachment to it, and know in my heart that however it grew, or did not grow, was out of my control. I did not pass by the house again for the next year or so.

Knowing this Mother’s Day, once again, fell on May thirteenth, I felt the need to go back by that house to pause, sit for awhile, and maybe get brave enough to knock on the door and tell the new residents the story of the tree. As I approached the home, I was delighted to see the yard was being kept up, had been trimmed and cared for, and was looking lush and beautiful as it matured. I watched the occupants of the home leave. Avoiding approaching them, I was able to sit across the street and get a good look at the “old” tree. It was strong and beautiful. What I noticed next left me smiling, and confirmed the strength, bond, connection, and love of family; and that all is, as it should be.

The tree no longer has one trunk, but rather five. Five strong and healthy trunks, all growing in a different direction. I know now it was–it is–a sign. I believe that if we pay attention there is confirmation one way or the other for all our thoughts and actions. I call these little confirmations “signs”.  That tree I planted with just one trunk, split into two. With time it started to grow back, not quite neat and orderly, but growing nonetheless. With time, care and nurturing it birthed five new independent trunks. This is now my family tree. One trunk for each of my parents’ children. There are five of us; all connected by our roots, yet each strong and independent. It’s the most beautiful sign I’ve ever received. It confirms to me that my parents are angels watching over us, reminding us we share common roots, but we can branch out in our own direction, follow our own path, grow at our own rate, yet stay connected on a deep level. And so it is.

“And the tree was happy” ~ Shel Silverstein, The Giving Tree

“Signs, signs, everywhere are signs!’

Blessings always,

Pam

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