Word of the Year

As most of you have probably heard over and over since December one of the trends is to designate a word of the year.  I originally didn’t have a plan to do this but after giving it a lot of thought and reading how other’s word of the year guided them through the past I decided to consider what word I would use.

Since I am trying to focus a lot of my time on finishing a draft of our book (read more here) my first thought was “NO”.  The reasoning behind this was a valid reason to say no to any further commitments.  If I said that was my word then I had the perfect excuse to not commit to anything new.  It all sounded great to me until I read other’s words.  I know, I know, I shouldn’t be worrying about what anyone else is doing or worry what others will think, etc… but, I still can’t stop thinking that way.  I think “no” sounds negative and would that come off to others as a “Debbie Downer” attitude, etc.  It wouldn’t be intended as a negative but that is what I perceived others would think.  Again, I know I shouldn’t worry what is inside someone else’s head but that is my genetic makeup.

So, after much thought and guesswork, I came up with another word that I thought would help me yet not sound so negative.  I am hoping it will help steer me in the right direction and give me a reason to not accept every request I receive to help out with this or volunteer here, etc.

My word for 2018 is PRIORITIZE.  

I am giving myself permission to PRIORITIZE what is important to me and my family.  It will not help me or my family to volunteer to run a committee for the school.  In fact, if anything it will only hurt my goals and probably the well being of my family because I will be too stressed.  I can say no to the lunch date since I need to use that time to write. The more I think about this word the more I have embraced it.   I consulted Wikipedia and the definition is the action that arranges items or activities in order of importance.  

A perfect fit for me!  I will try and update how my word of 2018 is working for me.  I am hoping it will give me enough permission to do the things that are most important to me and the ones I love.

Do you have a word for 2018?  If so, I would love to hear how you came up with yours and how it is working out.

 

 

 

 

 

 

 

 

 

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Beamer Learns About Traumatic Brain Injury

Sometimes you never know how your connections will work.  A local author and I had become “facebook friends” since we both knew another family who had experienced the terrible loss of their child.  I followed her and noticed she was continuing to write books in the “Tell Me Town” series she created.  The series was born out of her desire to give back to the community and help others.

Cindy Chambers was serving on the board of a local hospital and while on a tour she noticed the fear on both patient’s and parent’s faces as she walked through the emergency room.  She thought to herself, “Oh, I wish there was a book that could explain what was happening to a child in words they would understand along with characters who were relatable”.

She left that day and soon after the book series was born.  The books feature two main characters Kyle and his dog Beamer.  They live in a fictional town and have learned about the emergency room, fire safety, Cancer diagnosis, Diabetes I and II diagnoses, and Alzheimer’s just to name a few.  Cindy works along with the experts in each field to understand the complexities of each issue and writes a story kids will relate to and understand.

About two years ago I had noticed that she released a book about a friend with special needs. On a whim I sent her a message and asked if she had ever considered writing a book about Traumatic Brain Injury.  She instantly replied that she had been asked before and would love to meet so we could discuss.

We met at a local coffee shop and as I expected she was absolutely delightful.  She listened attentively to our family’s story and had some great ideas.  We planned to meet again soon and to bring Middle Miss into the conversation.

Our next meeting occurred at our home and Middle Miss and Mike were brought into the conversation.  We met a number of times to discuss the story and finally had a book.  Cindy consulted with a local neurologist to understand what goes on in the brain when it experiences such an injury and works with her illustrator to bring the characters and words to life.

Ironically, the book was released the day before our 16th anniversary of the accident.  Neither the publisher or Cindy knew the date so I call it serendipity.  Although, this is not Middle Miss’ full story she contributed a lot of her symptoms and stories to bring the book to life.  She was also able to contribute a statement in the book and Mike and I did as well.

We are so grateful for this opportunity as it gives Middle Miss a way to get part of her story out there.  We also had the opportunity to meet the neurologist who helped on the project and Cindy presented Middle Miss with the most beautiful award.  It was truly a very special day.

award photo

The book is available on Amazon.  If you purchase the book we would love a review and I would love to know what you think.

 

 

 

EXCITING NEWS?

pexels-photo-46274.jpegHappy New Year to all of you!  Yes, I know I am a week late.  Sounds like the story of my life.

Mike and I have been trying to put together a book for quite some time.  Some of it came out of trying to keep a record or journal of our family’s story and survival through the abyss known as Traumatic Brain Injury.  Whenever I would speak at events for either Brain Injury Services, Inc. or the Trauma Survivors Network  I would be approached by audience members who kept commenting that I should write a book.  Apparently, a story about a mom and daughter both have brain injuries from the same incident isn’t very common.  Go Figure!

Anyway, we have put the bare bones together and I was getting inpatient wondering if we had something publishable so I contacted a hybrid publisher.  At the time I didn’t realize what a hybrid publisher was but it is between a traditional publishing house such as Random House and self-publishing.  A hybrid asks for some money upfront from the author but the work is still owned by the author and the company helps with editing, typesetting, printing, marketing, and distribution.

I was very surprised when we were offered a contract to go ahead.  We have decided to spend a little more time refining the book over the next few months before going ahead.  There are so many things to still figure out such as how the 3 misses will take the news.  This will especially affect Middle Miss!  We want to lay out the story as honestly as we can and some of the things we have to share she may not like.  I guess we can cross that bridge when we need.

If anyone has any experience publishing a book I would love to hear about it; both the good and bad.  I am a big believer in the more you know the better the decision.

 

Yoga Blog Feature

A few months back while I was traveling to visit Big Miss on her study abroad adventure in Rome, Italy, I received an email inviting me to write a feature piece on my local yoga studio’s blog.  The studio had put out a request for contributors through their Facebook page and I had responded with a very brief description of how yoga helped me.

It took a while to iron out the details and to get my mind wrapped around writing the piece.  It didn’t help that we were also on summer hiatus and all three daughters were home and none of my “to do” items were getting done.  I must have taken some time to write since I received word a few weeks ago that my piece was published on the blog and they want more!  Woo Hoo!

I posted it on my personal Facebook page and received such an amazing response.  If you would like to read it go to this link (http://gowithityoga.com/blog/).

 

The Birth of Joy

I worked on this piece for a very long time; it had been in my head for so long and took awhile to refine before feeling comfortable about sharing it with the world.

I took a chance on an online site and was thrilled when it was picked up by one and published (https://medium.com/an-odd-mom-s-world/the-birth-of-joy-65901edc74a4).

I submitted to another publication which has both a digital and print copy circulation and was published in their June 2017 issue (http://tbihopeandinspiration.com/June2017.pdf).

It felt so good to get this piece circulated and out to other readers.  As expected, once I was able to get some successes the writing has increased, though not so much on this blog.  I hope to improve the frequency of writing here over the next few months and look for some upcoming links to a website my husband and I developed after talking about it for years.

Let me know what you think in the comments.

 

 

 

 

The Truth Eventually Reveals Itself

maxresdefaultI kept hearing stories about facebook friends who had DNA testing to determine their ancestry and found it fascinating.  So many were finding little traces of unknown heritage that had somehow never been spoken through generations of stories.  I was HOOKED!

At Christmas, Mike gave me a kit as a gift.  I was so excited!  I couldn’t wait to complete it and send it off for processing.  For those of you unfamiliar with these, a small tube is included where you spit some saliva.  Seal it and complete the accompanying paperwork. All of these are placed in a postage paid envelope and mailed it to the lab.  I used Ancestry.com but there are a number of similar services that conduct the same or similar tests.

I received periodic updates explaining where my tests were during the process and as it so happened this was a popular holiday gift so there was more of a back log than usual.

Approximately six weeks later I received an email late at night detailing my results.  I must have been in shock because when I look back on my reaction it was one of disbelief.  I had always believed that I was 50 percent Swedish since my paternal grandparents immigrated from Sweden and 25 percent Irish and 25 percent English from my mother’s parents who were also immigrants.

The following day I sent Mike a text as he was travelling for work. I included the results and he immediately responded asking if I could talk. I could immediately detect from his tone of voice that he was quite shocked.  He wanted to know what I thought before saying anything else.  I told him that apparently the man I always thought was my biological father was, in fact, NOT. My results indicated that I am 49 percent Irish and 48 percent English.  The remaining 3 percent was a mix of others but not a drop of Swedish.

The thoughts that circulated through my head were so numerous and yet I never once doubted the results.  In fact, a lot of things became clearer. When my father passed away, 6 years after my mother, I had the unfortunate task of cleaning out their house.  While going through his dresser I found a manila envelope containing a number of documents.  One of these was my ‘parents’ marriage certificate. I read it at least 10 times before calling Mike in to look at it.  They DID NOT get married until I was 24 years old! There was also a letter from an attorney stating that they lived as husband and wife from 1964 until April 1989 believing that a common law marriage was legal.  I am sure you can imagine the shock!

So, when I found out the man who I always thought was my father, was not, I did not experience the same level of shock that would be expected . Since my brother’s birthday was the following day I decided to call him and ask him what he knew.  He is 15 years older than me.  His father walked out when he was about 2 years old and my mother and he never heard from him again. Though we are technically half siblings I never referred to him as such and have always felt that he is my brother whether half or not.  I was hoping his memory would help explain what happened.  There was, and still is, a part of me that wonders if he knew or suspected about this all these years.

When I told him my news he sounded surprised. I asked if he remembered anyone in our mother’s life prior to my birth.  There was some silence and he asked if  he could try to think about it to jog his memory since this all occurred a long time ago.

The following day he called me and relayed that yes our mother was involved with someone prior to “marrying” my father.  He explained that my mother and “father” had dated for quite a while and one day she told him that they would no longer see Lenny.  We were always told to not ask too many questions so he didn’t.  My mother dated some men and there was one she was dating more seriously than others.  My brother would spend a lot of weekends at our aunt’s home and when he returned one Sunday evening my mother explained that she & Lenny got married.  A few days later they told him that they were moving to another state because she was pregnant and they needed a house with more space.

He further explained that once the move occurred our mother became a very different person.  She no longer went out every weekend.  She stopped working since she was now “married”.  She didn’t see her extended family as much and as the years went on saw them less and less.

I have had this information for a while now and have gone through a lot of emotions.  I started out very confused which turned to anger and then to empathy.  I feel sorry for my mother in a lot of ways.  She had to hide two large secrets and she most likely went through her life terrified that someone would uncover these.  I can not imagine living with so much secrecy.  What an incredible burden.

On the other hand, why didn’t she ever tell me the truth?  There are medical issues I may need to be aware of.  I was an adult with my own family when my mother passed away so she had plenty of opportunity to come clean. I have also wondered why my father never told me the truth once my mother passed away.  I am convinced he knew!

This information does solve a few questions that I have wrestled to understand.  I never felt as though I fit in and wondered what was “missing”.  My mother always held others back and would never let anyone get to know her probably in fear that her secret would be revealed.  I had an eye condition when I was four years old (strabismus-https://www.healthline.com/health/eye-muscle-repair) which is genetic yet no one in either family ever experienced it.  Middle miss also was diagnosed with strabismus at three and had surgery to correct it at four, just like me.  After a miscarriage I had some blood work evaluated and discovered that I had a clotting disorder (www.healthline.com/health/von-willebrand-disease).  The doctors explained that you inherit the gene from a parent.  My mother was deceased but I asked my father and he immediately got very angry with me.  He refused to discuss it and told me he had no idea what I was talking about.

I have reconnected with some of my cousins since this started which I am really grateful. I wish my parents had explained all of this to me prior to their deaths so I could understand what happened and listen to the reasons for their secrets.  I would have had the opportunity to grieve and heal with them supporting me.  The piece I hope everyone takes away from this story is that it is so important to tell the truth whenever possible.  Lies fester and build and hurt so many.  The truth is always the best way!

 

 

 

 

 

 

 

Graduation Day

When I think of a graduation I think pomp and circumstance, of course, graduation caps and gowns, an end, and, of course, a new beginning.

Middle Miss walked down the “ramp” and received her high school diploma a few weeks ago.  There were so many emotions and thoughts  going through me in such a quick amount of time.

Obviously, we were so very proud of all she had been able to accomplish.  When she was a little over three years old we were in a horrific car accident where she was very close to death, probably as close as one can get.  A result of this event is she has a severe traumatic brain injury and has endured numerous therapies, doctors, evaluations, IEP meetings, and much more over the last 15 and a half years.  While still in a coma the doctors told us that they did not know if she would ever wake up, and if she did, what the outcome would be. So to arrive at high school graduation at the age of 18 was nothing short of a miracle.

Of course, part of me felt that Mike and I, as her parents, should also receive a diploma since we worked for it by advocating and moving her towards the “finish line”.

The biggest question hanging over our heads is “What’s next?”  This is the question that has hung over her for the last two years since by junior year of high school most students know what they would like to do or how they want to pursue it.  Unfortunately, she is not one of them.

We don’t know if she will be able to earn a college degree. She is starting at community college and will take 2 classes along with a 1 credit college success class for 8 weeks.  She will spend 2 days on campus.  We advised her to take it slow and see how she does. The transportation hangs over us as well. Unlike many other 18 year olds she does not drive which is a further impediment to independence.

I am trying not to worry about all the details yet and bask in her enormous rite of passage which she deserves more than anyone else!
 

 

 

One of the Hardest

I am about to bear it all right now.  One of the toughest things I have had to deal with is loneliness.  How could I be lonely if I live with one cat, one dog, three children, and one husband?  Well, that’s a great question.  I am not deprived of contact with human beings or animals; I AM LONELY!

According to Wikpedia,  “loneliness is a complex and usually unpleasant emotional response to isolation. Loneliness typically includes anxious feelings about a lack of connection or communication with other beings, both in the present and extending into the future. As such, loneliness can be felt even when surrounded by other people. The causes of loneliness are varied and include social, mental, emotional, or even physical factors. Research has shown that loneliness is prevalent throughout society, including people in marriages, relationships, families, veterans, and those with successful careers.”

I have felt this way on and off all of my life but it has taken me a very long time to recognize it or define the feeling.  It hits me very hard when I try to have a conversation with someone and tell them about Middle Miss and some of her disappointments or how her life is shaping up and they have nothing to offer.  Instead of saying nothing, or at the very least, “I am sorry, this sucks, etc.”, they turn the subject around to a friend’s  high school son who had numerous ACL injuries and his “career” is over.  Seriously?  That’s all you can come up with?  Is that supposed to make me feel better?  That young man still has a great future ahead of him.  He can go on to a four year college if he chooses and live an independent life.  A hurt knee won’t jeopardize his education.

These are probably the times I feel the most lonely.  No one else has empathy for our situation.  No one else feels the pain I feel.  As this keeps occurring especially during this graduation season, I feel it even more.

Middle Miss’ future was stolen from her while riding in the back seat, strapped into her five point harness car seat, singing along to a Blues Clues CD on the way to her sister’s Nutcracker rehearsal.  Her future will never, ever be the same.  As the surgeon in the hospital said to us the morning after the accident, “The little girl you had before will never return”.

One of the Hardest

I am about to bear it all right now.  One of the toughest things I have had to deal with is loneliness.  How could I be lonely if I live with one cat, one dog, three children, and one husband?  Well, that’s a great question.  I am not deprived of contact with human beings or animals; I AM LONELY!

According to Wikpedia,  “loneliness is a complex and usually unpleasant emotional response to isolation. Loneliness typically includes anxious feelings about a lack of connection or communication with other beings, both in the present and extending into the future. As such, loneliness can be felt even when surrounded by other people. The causes of loneliness are varied and include social, mental, emotional, or even physical factors. Research has shown that loneliness is prevalent throughout society, including people in marriages, relationships, families, veterans, and those with successful careers.”

I have felt this way on and off all of my life but it has taken me a very long time to recognize it or define the feeling.  It hits me very hard when I try to have a conversation with someone and tell them about Middle Miss and some of her disappointments or how her life is shaping up and they have nothing to offer.  Instead of saying nothing, or at the very least, “I am sorry, this sucks, etc.”, they turn the subject around to a friend’s  high school son who had numerous ACL injuries and his “career” is over.  Seriously?  That’s all you can come up with?  Is that supposed to make me feel better?  That young man still has a great future ahead of him.  He can go on to a four year college if he chooses and live an independent life.  A hurt knee won’t jeopardize his education.

These are probably the times I feel the most lonely.  No one else has empathy for our situation.  No one else feels the pain I feel.  As this keeps occurring especially during this graduation season, I feel it even more.

Middle Miss’ future was stolen from her while riding in the back seat, strapped into her five point harness car seat, singing along to a Blues Clues CD on the way to her sister’s Nutcracker rehearsal.  Her future will never, ever be the same.  As the surgeon in the hospital said to us the morning after the accident, “The little girl you had before will never return”.

Speaking Her Truth

As some of you may or may not know March is Brain Injury Awareness Month and this past week it was Brain Injury Awareness Day on Capitol Hill.  Congressman Bill Pascrell of the great state of New Jersey founded The Brain Injury Task Force in 2000 and he continues to co-chair it along with Congressman Thomas Rooney of Florida.  The Brain Injury Association of America sponsors this event with a vendor fair in the morning, a panel of speakers in the afternoon, and a reception in the early evening.  The staff is also on hand to coordinate lobbying efforts by attendees and they can help coordinate these visits.

I joined the Brain Injury Council six months ago just as the planning for this got underway.  It had already been decided that the theme would be Pediatric Brain Injury which seemed to be a perfect “fit” for my interests.  I have only attended the event once which was last year since it takes a lot of coordination with my family and it is a VERY LONG day traveling to the Capitol and meeting with representatives and there is A LOT of walking.

Middle Miss was asked if she would like to speak on the panel since the organizers were trying to find someone who had a brain injury during their childhood and was in the process of transitioning from high school to adulthood.  Her name came to the attention of the organizers through the Executive Director of the Brain Injury Association of Virginia.  I sit on the board and she was aware that Middle Miss had attended the Youth Leadership Forum this past summer.

Middle Miss was asked to speak about her journey as well as touch on the services she had received over the years including what supports she will continue to need as she move on from public school.  We kept reminding her of the date and as each week went by I would ask her if the speech was written.  Imagine our surprise when the Saturday prior to the event the speech hadn’t been started.  She worked on it all weekend and as you can imagine this involved a lot of grumbling, feet stomping, huffy breaths, and breaks.  Finally, the evening before the event we had a speech!  Nothing like waiting until the ninth hour.

The morning of the event we were all racing around since we had to leave the house right after little Miss got on the bus at 7:20 a.m.  As anyone with a teenage girl knows they are rarely on time to leave the house and Middle Miss is notorious for changing her outfit as we are about to leave.  So it shouldn’t have been much of a surprise when she had to change.

The weather was quite brisk this morning and as we walked up to the Capitol and entered the Rayburn House Office Building we were quite wind blown.  Middle Miss chose to attend the first Congressional visit of the day along with some Virginia state employees and the Government Affairs Director of the Brain Injury Association.  Following this visit, her anxiety began to increase.  We walked around the very crowded and loud vendor fair and attempted to speak with a few people but she had to leave the area as it was too overwhelming and stimulating of an environment with the lighting, noise, high ceilings and wall to wall people.  Anyone requiring the use of a wheelchair or cane would never have been able to navigate this area.

Finally, the time to head to the room for the panel arrived and we attempted to get her acclimated to the environment nice and early, however, our attempts were thwarted when we all had to exit the room so staff could take away the tables and set the room up for the panel.  Once this all had been completed we entered the room along with the audience members therefore not giving Middle Miss time to acclimate her herself.  What do they say about the best-laid plans?

The moderator who I described to her as a teddy bear proved me right; he really took care of her by making sure she was comfortable and rearranging the speakers so Middle Miss would go second in the lineup of five.  He later explained that he did this on purpose knowing that her story would prove to be the most impactful since she was the only survivor speaking.  She was also seated next to the kindest gentleman anyone would ever meet.  A psychiatrist with the Department of Defense and a career military man he made our girl feel so comfortable which we were forever grateful.

I am not speaking as a proud mama, which of course I was, but she totally ROCKED that room.  She spoke so clearly and eloquently and with so much heart and authenticity.  Her talk was at times sad, devastating, raw, and always truthful.  As she finished we were shocked and awed to see that the audience, us included, gave her a standing ovation.  I could not believe the overwhelming surge of pride, elation, sadness, and awe that came over me all at once.  Here was this beautiful girl of mine, once clinging to the threads of life, speaking in front of one hundred plus people in the Rayburn House Building.  Validation does not come any better than that.  As we all returned to our seats the moderator mentioned that her two proud parents were sitting in the front and the woman next to me turned and said, “that is your daughter, oh my gosh, she made me cry, what a beautiful young lady she is and so brave to share her story here.”

Like I said, validation and the feeling that all of our hard work was beginning to pay off was overwhelming.image-1054_westfrontwithtulipshorizontal-4149