Federal Interagency Conference on Traumatic Brain Injury

It has been very quiet here on the blog while my attentions have been diverted elsewhere.  In December I worked on a proposal to present at the Federal Interagency Conference on Traumatic Brain Injury  I had never written a proposal and it was more difficult than I had imagined. I was so happy when it came time to hit SUBMIT.

When the email arrived in February congratulating me that my presentation was allotted a 15-minute session I was quite surprised.  The title is “A View From The Front Lines: A Caregiver and Survivor Perspective”, I planned to show how traumatic brain injury affected the whole family, not just the injured individual. Once I wrapped my head around this new information I got my “ducks in a row” and started writing.  The first pass yielded a presentation of 25 minutes.  The hard work began trying to reduce the presentation.  I felt so many important facts had to be deleted. After many edits, a final document was done.

The talk occurred on Day Two of the conference.  The text of the speech follows:

In 2001 I was living the “dream”.  Married to a wonderful and supportive husband, had two beautiful children and was staying home with them in their formative years.  We built a new house and moved in the second week of November.  The tide turned my husband was laid off a few days afterward. 

Three weeks later, my daughters and I were in a horrific car accident.  Olivia suffered a severe TBI and we were thrust into the new world of doctors, rehabilitation, and advocacy.   

Six days after admission I was told that Olivia needed to be transferred to an inpatient rehabilitation center since there wasn’t anything else they could do medically.  The closest pediatric rehabilitation hospital was 2 hours south or 1.5 hours North.  I was in shock and burst into tears. Among other concerns, what were we going to do about our 5-year-old Daughter? She started kindergarten a few months ago, we were living in a new neighborhood, and Mike was unemployed.   

The medical staffs at both facilities estimated she would be an in-patient for 6-9 months.  We discussed the possibility of moving so we could all be together while Olivia was in rehab or moving closer to Mike’s parents since there was a facility in Pittsburgh but ultimately decided to transfer to Kennedy Krieger.  A week elapsed before the transfer since we insisted on second and third opinions and we toured the two facilities which bought us more time.   

This event became the beginning of our advocacy work on behalf of our daughter. 

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The hospital social worker pulled my husband aside at one point and told him that I was having a nervous breakdown since I was crying repeatedly.  He responded to our daughter was in critical condition and another daughter at home and going back and forth to the hospital in order to ensure a quasi-stable environment for our 5-year-old was rough.  I was irate when he relayed the conversation to me. 

 Our time at Kennedy Krieger was fraught with both positive and negatives.  The physical therapist still remains one of my fondest memories if you can have fond memories of your child’s stay at an inpatient rehabilitation facility.  Olivia LOVED dogs and the movie 101 Dalmatians.  Beth tapped into that and she would encourage Olivia to move her limbs and eventually got Olivia walking by using a pull along dog toy.  Olivia couldn’t wait to go to PT so she could play with the dog and other fun toys Beth rewarded her with.   

Again, Mike and I alternated being at the hospital with Olivia and home with Our daughter.  Add to this, he was looking for a job, the holiday season was upon us, and we had to find attorneys to represent us.  We were constantly asked to retell the story of the accident, which I did not remember, and explaining the seating in the car.     

The discharge was December 28, 2001, exactly fourteen days after admission to inpatient rehab, not the 6-9 months estimate we were given.  This was definitely one of many miracles to occur.  Olivia could walk but nevertheless, her gait was very off and we feared her falling every moment.  Luckily she was still small enough that we could carry her up and down the stairs.   

Once home, I started noticing there was something not quite right with me.  I was sleeping a lot and could not be woken easily.   I also noticed I was having a very difficult time reading.  I would read an article in the newspaper and re-read the same paragraph multiple times and still not understand.  It didn’t get any better and finally, I decided to seek the assistance of a doctor. Luckily, the nurse practitioner knew what was wrong and referred me to a neuropsychologist.  He gave me a diagnosis of the Post-concussion syndrome.  I had no idea what that was so I went home and looked it up.  Let’s just say I was shocked to learn that PCS is another term for mild brain injury.  My first thought was when is this nightmare going to end? 

Olivia was found eligible for special education services in January, just 2 months after our accident.  We had an IEP in place soon afterward.   

Mike found a job in February 2002 and returned to work full time.  Though it was a relief financially I was terrified how I would take care of both girls, get Olivia to the various appointments she needed, and heal myself as well.  So many people have asked over the past 16 years how I did it.  Quite honestly, I don’t have an answer.  All I can say is that when your child needs to help you do whatever it takes to get it.   

Once we were home our daughter began playing school with Olivia.  She would sit down at a table we had in our kitchen and try to teach her all the things she needed to learn.  She would have Olivia recite the alphabet over and over and when Olivia got frustrated, which would often happen a minute into this game, our older daughter would burst into tears or start yelling at her that she needed to know these things.  We soon realized Our daughter was taking it upon herself to “teach” Olivia all the things she lost.  She felt that if she could teach Olivia she would be Ok.   

We found our daughter counseling soon after because we weren’t sure what she witnessed at the scene or what was going on in her mind.  She seemed fine to everyone else but we knew something wasn’t right.  She was diagnosed with Post Traumatic Stress Disorder and dysthymic disorder, a form of low-grade depression.  She went through 2 therapists before we found one who worked.  Of course, none of these appointments were covered by insurance, but we really felt that she needed this in order to heal.     

Imagine this, two young children, one has a TBI and requires OT one time a week, speech therapy once or twice a week, and other therapies at least one time a week and every 6 months add neuropsychic testing and neurologist appointments.  The other child has to attend therapy weekly and the caregiver is having physical and cognitive therapies.  Where does “being a kid” fit into this scenario? 

When Olivia was discharged the doctors told stressed the first two years of recovery were the most vital and afterward the likelihood of further recovery declined significantly. We were devastated at her one year follow up. Her neuro-psych testing results were abysmal and the doctor could not understand why her test results had not improved as they should.  I reached out to Brain Injury Services since she was currently on the waitlist for case management services in search of answers.   When the supervisor asked me if she was receiving any therapies and I listed all the things we had in place her response was, “oh, you are doing so much, there isn’t anything else I can recommend”.  On one hand, this was validation that we were doing all we could but on the other hand what was going on with her? 

Another early lesson for us was to only go to doctors with experience in brain injury.  These doctors and therapists were much more likely to have a positive impact on her recovery.   

Remember, this was 2002 and 2003 and there were very few doctors and therapists with brain injury experience.  Add in a pediatric specialty and the number of practitioners dropped significantly.  Fortunately, we lived close to a metropolitan area where we could access Children’s National Hospital and Kennedy Krieger in Baltimore.  I cannot imagine how a child in rural Virginia would fare.  It was not easy to get to Children’s in DC or Baltimore but we somehow made it work.  We didn’t have much choice.  While working on this speech I looked at the number of neurologists available to patients in Wise County Virginia. Ballad Health Systems, the largest healthcare provider in that area yielded 4 pediatric neurologists all located in Tennessee.  There was not any indication if they had any experience in brain injury.  What is a family in that area to do? 

As time went on we continued to fight for Olivia.  The school system was very difficult to work with at times.  We had to be well versed on what they could offer and made sure all the services were made available to her.     

Once both girls were in school full time, I finally felt that I had the time to devote to my healing.  When your child has been severely injured and you are told the little girl you had prior to that fateful day would never be the same, there is a lot of emotional pain.  These costs weren’t covered by insurance either.   

I was diagnosed with severe carpal tunnel syndrome in both of my wrists and had to undergo separate surgeries to correct the issue.  The surgeon later testified that these were caused by gripping the steering wheel so tightly at the time of impact.  Another setback for healing from this trauma. 

Over the years we added and took away a number of therapies including cranial sacral therapy and therapeutic riding. 

Private OT and speech services were discontinued not because she didn’t need it but trying to fit it in was difficult and there was such a high turnover of therapists that it was no longer beneficial.  During this time, I also learned I was pregnant.   

Olivia began resisting the services she was receiving at school.  She is the poster child for “invisible injury”.  We let some of the services go.   

Middle school was a battlefield.  At this point, it was becoming clearer that her injury was adversely affecting her and the way she interacted with her peers due to her processing issues. She started feeling the effects of bullying and the anger intensified.  At home, she would scream at us, slam doors, throw things.  There was one evening I remember vividly when I was comforting her younger sister who was scared of these outbursts and I suddenly had this feeling that Olivia was capable of hurting herself.  Mike and I decided we needed more help.  I kept thinking something was going on inside her brain but couldn’t pinpoint what it was.  We made an appointment with the neurologist who we hadn’t seen since she was six.  As soon as he heard our explanation and examined Olivia he asked if she felt her brain was exploding at these times.  She said she did.  He explained she couldn’t process all the information and her brain was having misfires.  He prescribed some medication and things got a little better.   

During the first month of high school, she fell off a horse at therapeutic riding and had a concussion.  Another set back which impacted the school.  We were referred to another doctor for testing.  This doctor brought so many things into perspective.  She suggested we have a pediatric neuro-ophthalmologist exam her since one of the bleeds had been at the occipital lobe.  This was news to us. I was shocked to learn that Olivia had lost 50% of her right peripheral vision.  The doctor explained that Olivia compensated all this time. I had so many questions which he graciously answered.  

Simultaneously, we began experiencing difficulties with the school and decided to hire an advocate to represent us at the IEP meeting and we wrote letters to the administration.  Her resulting IEP was written with almost all the services she needed and the school became very cooperative.   

We were and still are looking for different ways to help Olivia and the rest of our family.  After mentioning music therapy as another avenue, she finally agreed to attend a trial lesson.   A year later she was asked to join their stage production and tour local middle and high schools.  The show “Behind The Label” teaches empathy through monologues, songs, and dance.  Participants have disabilities ranging from autism, down syndrome, Tourette’s, OCD, Cerebral palsy and of course TBI, but they are not their label.  The profound change we saw in Olivia was staggering.  She blossomed, her self-esteem grew tremendously and she now had a bit of a social connection.   

She also was the first pediatric panelist during the 2017 Brain Injury Awareness Day on Capitol Hill.  A very proud moment for our entire family. 

We sought many resources during the past 16 years.  We found Brain Injury Services and they have provided case management and support for the past 16 years. During a conference early in recovery, I was lucky to meet Anne McDonnell who later became the Executive Director of The Brain Injury Association of Virginia and she has been invaluable to our family.  She has been a resource of information and I stayed in contact with her, eventually serving on the board of BIAV.  I also joined BIS’ Speakers Bureau and shared our family’s story.  These led me to quite a few wonderful people and other resources which also led me to Brain Injury Association of America and to this conference.   

Our family had been through a horrific trauma and we would never be able to return to our previous lives unscarred. But, we all survived!  There could have been a more devastating outcome so how could we bring some positivity back into our lives?   

At that moment we decided to share our story.  If one family could benefit it would be worth it.  We consistently searched for another positive story to navigate our way through ours and could never find one quite like ours.  We began advocating for Olivia immediately and vowed not to stop; 16 years later we are doing all that and more.  I believe it has made each of us stronger and created a stronger family unit in the process.  From the depths of a tragedy, a resolve was born and continues to grow today.  Don’t give up and serve as role models for others to do the same. 

 I was lucky to have the opportunity to attend the conference along with some of the best researchers in the field of brain injury.  This was a great opportunity and one I will cherish.  I have learned much and met other advocates in the process and reconnected with others.

Overall, this was a great experience.  The end of the second day I headed home so I could be there for Little Miss’ last day of school.  She and I have had such a rough year with her teacher and we needed to savor the end together.

 

 

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Twenty Five

Mike and I will be celebrating our 25th Wedding Anniversary tomorrow.  WOW!  Hard to believe!

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Some days it feels we have only known each other a short time and other times it feels we have been together forever.  When we got married there were so many hopes and dreams.  Most of those came to fruition.  I remember one evening sitting in our first apartment, he predicted we would have 3 daughters and a male dog.  Guess what?  He was almost correct.  He forgot to include the female cat!  20160922_201412-e1523579075918.jpg

Those of you who have been married for awhile know that marriage isn’t a piece of cake.  It is not easy.  There are times when things are very smooth and you sync perfectly.  The two of you agree on everything, share goals, political views, decorating choices, etc.  THEN, there are THOSE times when a union on anything seems impossible.  These are the times when commitment really makes a difference.

I recently read a great piece on marriage.  If you have never followed Nina Bazdin  I highly encourage it.  Nina has an advice column on her website and the questions are really interesting.  The latest was submitted by an ambivalent wife who was debating whether or not to leave her marriage.  She wasn’t miserable but wondered if she could be happier.  Nina and her mother consulted on this answer and I felt their response was spot on.

Some say there is nothing better than “new love”.  The love of an early relationship when the butterflies are in your gut due to the excitement.  Not knowing the person well, but eager to learn everything, thinking it’s perfect.  This feeling doesn’t last forever and it shouldn’t.  We start to show our differences, we learn from each other and we get lazy. Life happens.  People evolve.

When Mike and I got engaged one of his aunts hosted an engagement party in the Pittsburgh area where a lot of his family lived.  He was the first of his three brothers to marry and it was such a wonderful gesture.  During this party, a number of women approached me and marveled at the fact that both Mike and I came from homes with parents who were still married.  Little did I know then what I would discover later but more about that here The Truth Eventually Reveals Itself.   We grew up in the generation that had one of the highest divorce rates and we both had extended family members who had experienced one or more.

During the past twenty-five years, we have had our share of highs and lows and we have witnessed other couples go through their own.  What makes our partnership continue and others tumble?  I would be a rich woman if I knew the answer to this.  One reason I think we continue to grow in our marriage is we have a great deal of respect for each other.  Without respect, I don’t think any relationship has a chance.  We argue and disagree plenty of times but we try to listen to other, make a decision and move forward.

I have seen plenty of people stick to their opinion and refuse to compromise out of stubbornness.  This is not going to help anyone.  What transpires is a stalemate and no one is going to win.  I have also seen couples undermine the other in front of their children which, again, only causes rifts to the partnership as well to the relationship with the children.

Children bring such a unique element to marriage.  The parents each come from unique backgrounds and their respective families most likely handled things differently.  Once a partnership is raising their own child there are bound to be conflicts.  One was raised by a helicopter parent and the other by a “hands-off” parent and there you have the potential for a huge dispute. How the partnership navigates this can impact their marriage for years to come.

Two people come into their union with unique narratives of their past, including hurts and betrayals and these also can wreak havoc on the relationship.  Marriage is not just about love.  Yes, there has to be love and affection for one other, at the core, but there is so much more.

We celebrated our anniversary this past weekend with a night away.  Mike had done most of the arrangements and we enjoyed Tea at the hotel in the afternoon.  My children were getting much laughter about this since he is not a tea person but he arranged it because he knew I liked it.  While enjoying the company of each other as well as the scrumptious sandwiches, scones, and treats as well as the champagne, thrown in by the hotel the manager came by to extend his congratulations.  He asked us what our secret was to be able to celebrate 25 years of marriage. We both chuckled and said we don’t know what the secret is but one thing that certainly helped was patience.

Thinking about this I would have to say that each marriage is different, but the two things that have been most central to our union is patience and respect.

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Sharing on Facebook

I have to admit I have a love/hate relationship with Facebook.  I have really enjoyed reconnecting with friends over the past 10 years since joining the social media craze.  It is the competitive nature of the beast that makes me retreat.  I sometimes feel that a lot of members are trying to one-up each other or show how perfect their families and lives are.  This has never been a characteristic of mine but I am sure I have done my fair share of bragging as well.

I recently had my article published on the Thrive Global website.  The article had previously been published on  Medium and TBI Hope.

On a whim, I shared the article on my personal Facebook page.  After clicking “post” I felt a bit of nervous angst.  I wasn’t sure what kind of feedback the article would receive.  Within minutes, my notifications started buzzing with some of the most beautiful comments I have ever received.  There was so much support and encouragement for both the story and our family.  I was overwhelmed, in a good way.  I knew that I had made the right decision when I decided to share the piece.  Some of my Facebook friends did not know our family’s story into the depths of Traumatic Brain Injury and some had been right there with us from day one cheering and praying for Middle Miss’ recovery.

I think it also was a tiny step of putting my writing out there and seeing how it was received.  I think fear has been holding me back while trying to write our book.  Fear that it won’t get published, it won’t get read, readers won’t resonate with the story.  I have finally embraced that no matter what I have to try.  I have to write and try to get it out to the masses.  It doesn’t matter if no one likes it.  As we started to talk about this project our goal was to give other families a lifeline while going through a devastating event such as ours.  When this happened to us 16 years ago there wasn’t a guidebook telling us how to proceed, what types of specialists or doctors we would need, etc. We didn’t have the resources that are prevalent in today’s world.

Now the hardest thing is for me to stay focused and allow the time for the writing to happen.  This has been such a hard thing to accomplish lately.  I need to put aside other thoughts and responsibilities and treat this as my job.  I have really tried to keep a full day or two each week to fully devote to writing.  That means no volunteering at hospitals or schools, no lunches with friends, and no running errands or shopping.  This last one has been hard because I have to fit the food shopping and regular errands in somewhere.

I need to delegate and try to combine errands with other activities which usually requires a lot of planning.  Does anyone have suggestions?  It would be nice if I could hire an assistant but that definitely won’t be happening.

You’re Fat!

Those are words no one wants to hear. But when you are a mom who was teased at a very young age about her extra weight, went through an anorexia/binging phase in high school, gained more than the freshman 15 in college, and your daughter tells you these words were directed her way your heart splits open.

Having experienced body shaming for most of my life I have tried to be very cognizant of the words I use around my daughters. My mother used to say “If we could cut off part of your backside, we would have a really good steak”. I can’t imagine ever saying these words to anyone.

It’s no wonder I had issues.

Since becoming a mother over 21 years ago I have tried to model healthy body image. Both Mike and I have shown them healthy eating habits eating most of our meals at home. The only times we eat at fast foods restaurants is when we are traveling and our choices are very limited. We have shown them, through action, how exercise has helped us maintain a healthy lifestyle as well.

None of the 3 misses are natural athletes, they take after me in this area, but we have enrolled them in soccer, softball, dance, cross country, swimming, and martial arts classes. They don’t seem to enjoy exercise and we sometimes have to really push Middle Miss to do something but we have given them the tools. I am always secretly jumping for joy when Big Miss mentions attending a yoga class, one of my favorite exercise choices.

So, when little Miss came home from school and told me the boy who has been harassing her all year said she was fat my heart broke. It took me back to the school playground when kids would taunt me with, “Kelly her belly is so full of jelly” or “You have such a pretty face but…”.

I had noticed that in the past year she had been gaining weight, especially in the tummy area. Middle Miss had always been a bit heavier than her peers but she had been like that since she was born so I figured it was her body build.

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Little Miss, on the other hand, was petite for most of her life. At her, one year check up the pediatrician told me to keep breastfeeding her since she hadn’t gained enough weight. Her feet have always been much smaller than her peers, she was a little peanut compared to her sisters.

During her checkup last year I asked the pediatrician about her weight after asking Little Miss to leave the room since I didn’t want her to hear the conversation. The doctor did some bloodwork after I expressed some concern about a thyroid condition which I have. The tests were negative and the doctor said she wasn’t concerned about her weight.  She commented that a lot of girls this age put on a little weight due to the hormonal changes that are occurring.

We have tried to get her more exercise but it’s been hard since she has so many anxieties. She doesn’t want to play any sports having played soccer for a number of seasons and leaving once her age group transitioned to the larger field. She still refuses to put her head underwater or get her face wet even though we have tried various swimming programs. She has refused to ride a bike, ice skate, or roller skate fearing a fall. The only activity she has continued is dance and that is precarious at the moment.

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I have done some research about the best way to talk to your daughter about her weight and I am at a loss. All the experts recommend emphasizing healthy eating and exercise and not using the word diet. We have done this all her life.

I recently read a study that was conducted in England which encourages parents to speak about a child’s weight up front. The researchers believe the reason the United States has an obesity epidemic is the lack of conversations about weight. This could be the case but I am cautious with that due to my experience.

I did read another article that suggested speaking to a child about this issue by asking her how the comment made her feel. I get this. I can envision asking her, “so how did the Boy’s comment make you feel?” The only thing that worries me is that whenever I ask her these questions she will usually respond with, “I don’t know”. How do I follow up after that comment? I don’t know where I can go from there.

Have you ever been on the receiving end of this talk?  I have but it wasn’t handled correctly.  Any advice to share with this Mom?

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.

 

 

 

 

 

 

 

 

 

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.

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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.

 

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!

 

 

 

 

 

 

 

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”.