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)

 

Advertisements

Special Moms

I published this poem previously but on a different forum which has been removed, so I’m reposting here on my blog. This is written for all the parents and caregivers out there raising children with special needs. I wrote it from my own perspective as a mother, but I want to recognize that in our generation there are both moms and dads equally sharing the joys and challenges of parenting. Many fathers have also taken on the role of primary caregiver and this goes out to them as well. 

I also wrote it with other women and moms in mind who don’t understand what it’s like to be one of “those” moms. I mean that light-heartedly because I’ve found we have much to learn from each other, and we’re more alike than different. We’re women, we’re moms, and we all need the same things, and we need each other. Girl friends mean the world to us. I know I need friends that “get it” as well as those who don’t. Both have something special to offer in unique ways.

 

 

Special Moms

 

The weekend is upon us, everyone’s ready to play,

They ask for your plans, you don’t know what to say,

Some are leaving town for a weekend away,

Many look forward to sleeping late every day.

 

You want to seem normal and add to the chatter,

But you know that the weekend does not really matter.

Your weekend resembles the other days of the week,

Sleeping in is something of which you don’t speak.

 

Do you dare ask for help from family or friend?

Will the agency have a reliable stranger to send?

You know you can make it; you’ve done it before,

The days will be filled with children and much more.

 

You’re a woman, a daughter or sister or wife,

Maybe single or divorced at this time in your life.

But a mother defines you every day of the week,

For your child is special and very unique.

 

You know what is best for them in every way,

Their care and needs in your hands every day.

You love them more than words can define,

But you wonder if you’ll have any free time.

 

How do you care for yourself and your special needs?

You reach for inspiration to plant uplifting seeds,

In your mind these things make you feel empowered,

So others won’t think of you as a hopeless coward.

 

You seek support from mothers who have special kids,

When your child has a seizure they don’t flip their lids.

It’s a comfort to know someone is there to uphold you,

When you’re feeling alone, forgotten, defeated or blue.

 

Old friends have stopped calling or coming around,

You miss all the good times but it’s a new life you have found.

You wish that they understood you need what they need,

Just a friend, a phone call, or a good book to read.

 

A cup of coffee or tea, a night with the girls,

Your hair fixed up with those long lost curls,

A dinner or dance, just a laugh or a beer,

A movie that makes you shed a small tear.

 

You’re a woman, a mother, a daughter, a friend,

An advocate for your child, who will fight to the end,

You’ve counted your blessings; you know who you are,

For your child you wish upon every shooting star.

 

Stand up and be proud of all that you’ve done,

It has been exhausting, ongoing and not always fun,

But you’ve done a great job, you know that for sure

With your unending love which will always endure.

 

Kiss your child good night and hug them once again,

Know what a difference you’ve made as hard as it’s been.

Remember tomorrow when the new day is about to start,

You’re a mother who loves from deep down in your heart.

 

Hugs to all the special parents!

~Pam Blackburn (just trying to express)

Groundhog Day–Again

Sorry about the last post I sent in error.

This is a reblog from last year’s Groundhog Day, because they always return….

It’s Groundhog Day which is a day that has significance to me. In the classic movie, Groundhog Day, the main character wakes up to report if the groundhog sees his shadow; however for him every new day turns out to be Groundhog Day over again. He becomes stuck in a seemingly endless loop.  As the character in the movie becomes increasingly aware of his ability to change how this same day turns out his life finally begins to change for the better. As I’ve written many times I often refer to my life as Groundhog Day, in reference to the movie. When Ron and I spoke to prospective adoptive parent groups we often used this reference to help them understand what they would be undertaking if they chose to adopt a child with special needs. Admittedly, it drove some folks away, but the instructors never discouraged us from speaking the truth. Better to recognize now that you weren’t able to take on the challenge than later when a child was in your full-time care. We also learned how to make each day a new day, embrace and enjoy it even though it may appear the  same as the day before.

The significance of Groundhog Day in the traditional sense is whether or not the groundhog sees his shadow as he crawls out of his hole in the early morning hours. If he sees his shadow, winter, it is assumed, will continue for six more weeks. We tend to think of winter as cold, dark and an imprisonment of sorts. It keeps us locked inside, unable to enjoy all the light, warm, bright sunny days that surely lie ahead in spring and summer. I’d like to offer an analogy of winter and its cold darkness to that of our own shadow; that deep, dark secret place we try to conceal and hope no one sees. It is the part of us we deny, pretend doesn’t exist,  hide, and know we can soon put behind us as the light is sure to shine again and bury the shadows within. When you woke up today did you see your shadow? Did you recognize it, acknowledge it and embrace it as part of your “whole” self? There is a common thought in our world today that we must only embrace the light, not give attention to the dark side that exists within us or it will grow. I believe in order to heal and fully live in the light we must first embrace and fully experience the darkness.

Debbie Ford, one of the authors of The Shadow Effect, states, “Our shadows hold the essence of who we are. They hold our most treasured gifts. By facing these aspects of ourselves, we become free to experience our glorious totality: the good and the bad, the dark and the light. It is by embracing all of who we are that we earn the freedom to choose what we do in this world. As long as we keep hiding, masquerading, and projecting [the negative messages we hide] inside us, we have no freedom to be and no freedom to choose.”

The movie, Groundhog Day shows us that we have the power to change our outlook and if you are feeling trapped, stuck and drained making a few changes can help us witness the change that is possible within each of us. But it also shows us the main character’s shadow, his dark side, the side we hope he soon identifies. It is only after he recognizes it himself, embraces it, sees how it’s effected his day after (same) day experiences that he is able to see the light, make conscious choices to change and experience life to its fullest. Today, I challenge you to look for your own shadow along with the groundhog. Will it be six more weeks of dark days ahead for you? Are you willing to embrace your shadows as part of your whole being, experience them fully and stop hiding in a dark hole, but come out to show the world your true self? You have the power to choose, to change, to shine your light, and the right to love every part of yourself.

Shine on! (Just Trying to Express)

The wake-up scenes from the movie borrowed from a youtube video:

http://www.youtube.com/watch?v=OyBSrBqogPY&feature=related

Diesel is Home

Today I cleaned off the glass door which leads outside. It was covered with Diesel’s paw prints and smudged by his nose and tongue prints, the signs of a dog desperate to be on whatever side of the glass we were on, always wanting to be near his friends. As I cleaned off those prints I was struck by the thought that I was wiping away his prints for the last time. Then I glanced to my left and there on the table sat his ashes and a copy of his paw prints; one of the left, and one of the right. Typically the vet’s office only does one paw, but Ron and I disagreed on which paw they should print. I wanted his left and Ron his right. The kind veterinarian said he would do both. This may seem like a ridiculous disagreement about which paw to print but his paw prints were very unique, each telling a story of who he was. The left had only 3 toes, the scar he wore from that toe being removed just months ago due to bone cancer. His right paw was totally intact. Each one is perfect in it’s own way. 

Image

 

Diesel was a hands (or paws) on dog. If you petted him (which he demanded) he had to touch you back. No one got a calm greeting by Diesel, but rather an enthusiastic touch, lick, and in-your-face meet and greet. His touch was not light, after all he weighed nearly one hundred pounds, and rested all his weight on your lap or arms, making it nearly impossible to give back the touch he so enthusiastically sought. It was just his way of loving you. If you didn’t like animals Diesel was not the dog you wanted to meet. He could be downright frightening with his size and enthusiasm charging full speed ahead straight toward you. If you loved dogs you noticed his tail wagging with love as he approached, and you knew he was not to be feared. But you had better not mind a wet kiss, a heavy paw, a deep look into your eyes, an affectionate nudge, and a lot of fur left behind on your clothing.

Image

 

Diesel bonded with everyone, but he and my husband Ron had a special attachment. Diesel would lay in the driveway while Ron was working in the garage, keeping a close watch on everything going on around him, yet one eye on Ron at all times, always the protector. One hot Phoenix day Diesel was in the garage (in the shade) with Ron when the UPS truck pulled up. Diesel jumped up and headed full speed ahead toward the truck and driver. Delivery people tend to be really terrified of dogs, and we were concerned how the driver was going to respond, but Diesel was well on his way by the time Ron could call him back. The driver froze in his steps and looked at the dog, then at Ron, then again at the dog. What happened next left us all laughing hysterically. Diesel ran right past the driver, paying no attention to him at all, and with a leap and bound landed right inside the air conditioned truck settling in on the cool floor.

I have endless stories and fond memories of our beloved Diesel. He was a lover, a survivor, a protector, and always a friend. Ron rescued him at about ten months old; large, untrained, strong and a little scary to me, yet eager to please and quick to learn. Diesel watched closely over all the kids, but especially Melissa who often was on the floor stretching and moving about. He tolerated all her attempts to try to get him to bark (because that made her laugh). He protected her and embraced her, especially when therapists were in our home. 

While Diesel protected and loved us, he never gave up his own fight for survival. He wore a bullet in his hip for 11 years, something we assume he got while living in the rural desert before we met him. He had arthritis which only slightly slowed him down and survived three different types of cancer and surgeries to remove them. He was my hiking buddy until his paws could no longer stand the rough ground of the desert, and he spent hours comforting the many wounds of his human friends. He was by my son’s side when he came home from the hospital recovering from two shattered lower legs. He lay by my bed when I recovered from various surgeries and always notified me of any (perceived) dangers, such as the UPS and pizza delivery folks, Jehovah Witnesses at the door, or girl scouts selling cookies. He lay by Zach when he returned from surgery this past summer, and right by Ron’s side when he was recovering from surgery for the rod he had placed in his broken leg, always by his side as he built back his strength. He often walked the labyrinth with me, typically leaving before me and keeping a watchful eye from a distance until I finished. I felt his presence with me in the labyrinth yesterday as I walked, and it brought me peace. Our other dog, Gypsy walked with me too for the first time since Diesel physically left us. She must have felt his presence also. I cannot recall anything about Diesel that does not bring a smile to my face.

When I got the call yesterday that his ashes were ready to be picked up. I could not bring myself to get them, so I called Ron to see if he would be able to pick them up on his motorcycle. Later, I asked him if it was difficult to go there and get them, and his response was, “No, not at all. Diesel is home with us now.” We have his ashes, both his paw prints, and two small clips of his fur. He is back home with us now, and he remains with love in our hearts forever.

Trying to Express, with love and gratitude for the gift of love from a true friend!

 

It’s All About the Journey

As I make my slow pilgrimage through the world, a certain sense of beautiful mystery seems to gather and grow. ~A.C. Benson 

Image

For many centuries people have embarked on sacred journeys, or pilgrimages, to shrines, temples, cathedrals and other holy destinations. In Medieval times priests sent poor people on these sacred journeys telling them they would be closer to securing a place in heaven and saving their souls if they prayed at these holy places, offering gifts to the monks and Lords. Poor people traveled great distances on foot, often finding peace at these places or what they believed to be redemption for their souls.  Wealthy people would pay the poor to go on pilgrimages for them, sure this would also secure their place in Heaven (some things never change).

Today these journeys continue and people spend days, months or years traveling to far off lands to find what is missing in their lives, turn inward, find peace and nurture their souls. Elizabeth Gilbert spent a year doing this and sharing it with us in her book, Eat, Pray, Love. Wayne Dyer spent a year living the Tao, and then shared his interpretation in Living the Wisdom of the Tao, and his experiences and insights in many of his other books and lectures. He also takes people on tours to prearranged destinations to embark on their own personal journeys. He shares these experiences in his lectures from time to time.

Pilgrimages have become popularized again, in our modern times, and have almost been celebrated as something we have to do to really look inward, become enlightened, see who we are and whether we are living the life we have come here to live. It’s a spiritual journey we feel we can only get from walking the holy places on earth. Many people feel they have really missed out on something if they have not embarked upon one of these journeys.

Did you know you can “Google” Pilgrimage tours and find a destination that will best suit your budget, needs and desires? The most common destination seems to be India, but there are many places apparently where we can better “find” our true selves and at special group rates! Common destinations seem to be Greece, Italy, Egypt, and Israel. I was somewhat surprised to see Prague, Ireland, Mexico City and Poland as destination Pilgrimage tours. This has become big business in these days of popular spirituality. And, who are you, anyway, if you haven’t been to Lourdes and Assisi? Before I head down a road to sincere sarcasm here, I want to say I have the utmost respect for people who take pilgrimages, and I have heard some of the most emotionally moving stories from those who have traveled to some of these destinations.

I have also heard some of the most beautiful stories of people connecting with their souls (whatever that means to them) in places nearby their homes, while on a nature hike, a visit to the ocean or mountains, while riding public transportation, or at a local homeless shelter. People have amazing experiences while driving down the freeway, talking to a stranger in line at the grocery store, visiting an assisted living or nursing home, helping someone, or listening to music (which I feel offers more power than given credit). I heard an amazing story from a friend who had a very enlightening experience in the Redwood Forest among the towering giants. You can read about one of my own experiences during a visit to the Rocky Mountains a couple years ago here.

Image

Anyone who knows me or follows me here knows I’m pretty much a hot mess when it comes to figuring out what life is all about or what my purpose is here on earth. I do not live without opinion or judgment. I’ll admit that, while many others will not (yes, I recognize that judgment). I obviously have more questions than answers and I’m quite all right with that. See, when I question, I find insight and it helps push me forward with another question and yet another perspective to consider.

We don’t receive wisdom; we must discover it for ourselves after a journey that no one can take for us or spare us. ~Proust

Some of my personal experiences that have had the greatest impact on my life and uplifted my soul are those I have spent doing what would seem like the most mundane or ordinary activity. I find the most benefit in creative endeavors such as painting or decorating my home, writing, building my labyrinth and our outdoor space this past summer, and hearing children, or anyone, laugh. For it is in that time where it’s felt like minutes, but turned into hours, that I get lost in the Now. I have freed my mind of thoughts and entered a deep trance-like state, held no judgment and truly found joy.

As the calendar flipped over this year, and I evaluated what I’d like to see improve in my life the answer became clear. It was simply everything. Yes, everything. So, I have joined the popular wave of current thought, and am embarking on a Pilgrimage. Of course this is my own pilgrimage with a twist, and I have no gurus, monks, chosen teachers or leaders, except my own heart. I am following my heart. Scary, indeed! I haven’t always listened to my heart so this should be interesting. My heart is speaking. I am listening. My thoughts are interrupting (often) and I am trying to observe them without judgment.

“You were given life; it is your duty (and also your entitlement as a human being) to find something beautiful within life, no matter how slight.” ~Elizabeth Gilbert

This pilgrimage or journey as I prefer to call it, takes place in my own home, backyard, and community. It will last 90 days, involves daily meditation, a walk through my labyrinth, reading various chosen materials and journaling daily. I am in a state of mindfulness, noticing everything I do with all my senses, and without judgment. Oops, notice judgment above. Ok, trying not to judge. I’m on day 8.

Image

This has been incredibly challenging (yes, I know its only day 8) because I am not a disciplined person. Just knowing that I have these things to do everyday and that I have to be mindfully aware and in the present moment is, well, difficult. I’m not fighting it though, and I can say I look forward to my meditations and even more forward to my labyrinth walks. I am doing things I enjoy and trying to bring more creativity and joy into my life.

Image

I wake up in the morning with a renewed sense of purpose now, looking forward to the day. I don’t generally take the time to think about myself because I have kids who need me, and they get most of my attention. What I’ve discovered so far (yes, in just a week!) is that I am more available for them by being more attentive to myself. It’s all about self-love in the end, I believe.

By sharing this with you, I now have people to hold me accountable, something I don’t generally like so be gentle with me. I’ll be sharing parts of my journey in blogs, although it may be a different location, which I’ll share when I set that up. I hope to see a new, improved me in ninety days. I am inspired and looking forward to the challenge.

“Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings. And once you have achieved a state of happiness, you must never become lax about maintaining it. You must make a mighty effort to keep swimming upward into that happiness forever, to stay afloat on top of it.” ~ Elizabeth Gilbert, Eat, Pray, Love

So Everyone Has a Choice?

I’m sitting on the couch (it’s been 4 hours now) watching my daughter, Melissa, lay motionless, her typically rigid, contorted body relaxed and straight, her usual flair for the dramatic, quieted and gone, for now. This is the day after a night of seizures. She is asleep on the floor. She looks so peaceful and relaxed that I almost feel good. It’s a soft space, the carpet and pad extra thick and chosen with her in mind, since this is the place she spends much of her time while at home. I’ve propped a pillow under her head because it seems to be more comfortable in my mind. Melissa has a traumatic brain injury which left her unable to walk, speak, see or make choices for herself. I am her eyes, legs, arms and voice. I am her choices.

“With every experience, you alone are painting your own canvas, thought by thought, choice by choice.” ~Oprah Winfrey

Melissa is not without an opinion. Without any doubt she lets us know when she does not like something that is going on, such as her physical protests to various therapies, refusal to eat certain consistencies of foods, loud gasps when rain falls on her head and rolls down her back, or swinging her arm when someone touches her without warning. She also let’s us know when she is happy; her squeals of delight to certain songs, riding in the van, the smile on her face when she gazes into the bright sun, and her contagious laughter when she hears odd sounds or the dogs barking. But, what about the bigger things? The big decisions in life, such as living arrangements and surgeries, as well as the little things like what to wear or eat today, or how to fix her hair. What about those instincts we all have, the little voice inside that tells us what our heart desires? What about that voice?

“There is a voice inside of you

That whispers all day long,

“I feel that this is right for me,

I know that this is wrong.”

No teacher, preacher, parent, friend

Or wise man can decide

What’s right for you-just listen to

The voice that speaks inside.” ~Shel Silverstein

People will argue that everyone has choices, and even her living with perceived limitations is her choice. Perhaps they are right on a deeper, spiritual level. I don’t know. The human level, where the majority of us live daily, tells me otherwise. People ask, “what is the one thing you would give Melissa if you could?” Some may think I would wish for her muscles to get the message from her brain so she could walk or grasp objects easily, or to take away the horrible scars she wears as a reminder of her injury. Most feel I would give her vision, or any number of things which appear to limit her. But, if I could give her just one thing, it would be a voice; the ability to express herself fully and make her own choices. Most twenty-eight year olds make their own choices, right?

“Understanding that the right to choose your own path is a sacred privilege.  Use it.  Dwell in possibility.” ~Oprah Winfrey

Melissa expresses herself in many other ways. I write about it often. But her choices are limited. Her dad and I make most decisions for her, trying very hard to think about what we feel is in her best interest. And, I think to myself, am I making the choices she would make? Laurie Halse Anderson said, “When people don’t express themselves, they die one piece at a time.” Are there pieces of Melissa which are dying because she is unable to express them? I shudder at the thought.

Melissa has a VNS (vagus nerve stimulator) device implanted in her chest. It operates much like a pacemaker, with leads that wrap around the vagus nerve which then activate electrical impulses at regular intervals to help control seizures. That’s my simplistic description. Her device stopped working months ago due to a dead battery and broken lead wires (this is what we believe to be true with limited ability to know from tests performed). Melissa’s seizures have increased without the device functioning. She has both positive and negative things we “see” happening in it’s absence. There has been a problem getting the hospital to allow the doctor to perform surgery to either remove or replace the device. This battle has just ended with approval and an upcoming surgery.

“Your mind knows only some things. Your inner voice, your instinct, knows everything. If you listen to what you know instinctively, it will always lead you down the right path.” ~Henry Winkler

Meanwhile we fought our own battle trying to decide what to do when, or if, the hospital consented. Do we replace it or remove it? Will this doctor/hospital battle happen again in the future? How does Melissa feel about the decision we (the doctors and her parents) will ultimately make? I have so many questions to ask her. How does it make you feel? Is having the VNS better than not having it? What is your intuition telling you to do? Are you scared? Does it help you? Does it hurt? What is your inner voice telling you? What is the right path to take Melissa? Are you mad that you have no choice about what is going to happen in your own body? Me too.

Just me trying to express once again…

Feeling Grateful for Friends

What is a friend? I will tell you. It is a person with whom you dare to be yourself.” ~Frank Crane

As a mother of children with special needs it became obvious to me early on that we were losing friends quickly. As our children got older isolation became a fact of life.  Our older children grew up and went off on their own, and our involvement in the schools, sports, and other activities they were involved in dried up, along with the friendships that came with those things. The empty nest syndrome others talk about is not going to happen in our home, and I began to wonder if I’d ever find a way to meet new friends. I am always grateful to those that have stuck with us through the years! But, I long ago gave up the notion of finding a friend who “got me”, accepted me with all my quirks, faults, and things the rest of the world judged as strange. I’ve been criticized and questioned for the things I do, such as my motives for adopting kids with special needs, having a larger than average family, and numerous other “stuff”. I’ve heard the whispers, gossip and bold remarks made directly to me about my unwillingness to follow what is popular, and listening to my heart even when it seems to make no sense. I’ve been told the things I do are stupid (yes, people actually say those things!). I have always related to Winona Ryder’s character in the movie Beetlejuice who casually announces, “I, myself, am strange and unusual.” I actually like that about me.

Recently I’ve been blessed with a great new friend. She’s not part of the club (you know, the one that you become a member of if you have “those” kind of kids). She didn’t really have any idea what my world was like, but never judged me, and best of all tried to get to know my family and our special needs. She is also a caregiver by nature, although not in the same sense of the word. She is compassionate and kind, warm and caring, but real and human, fun and funny, with quirks of her own (and will admit it). This is the kind of friend I’ve only read about; the one who doesn’t care if you’re fat or thin, what you’re wearing, whether or not you have makeup on, a smile on your face, or your hair pulled up on top of your head in a quickly-thrown-together-hectic-morning-sort-of-way (sorry, I went hyphen crazy for a minute). Perhaps it took me fifty-three years to be comfortable enough with me to spend time with someone so similar, yet, thankfully,  so different. It’s awesome to find someone who I feel so completely comfortable with that I can truly be myself with no fear of judgment. You know who you are, and I want you to know I’m blessed by our friendship. You make the world a better place. Thanks for sharing all the joys and sorrows, laughter and tears, support and encouragement, and all that makes a friend worth having!

Just Trying to Express with gratitude, Pam