Scans Don’t Lie, Or Do They?

The pain kept ebbing and flowing.  Somedays there wasn’t any and then it would come on with such intensity.  I tried stretching but the pain didn’t subside.

Mike and I despised the mattress we bought seven years ago and decided it was time to get a new one.  I expected to wake up renewed and refreshed after the first night but was severely disappointed.  I gave it a few more days and still, nothing helped.

I made an appointment with a physical therapist hoping a few visits would relieve the pain and I could go on my merry way. The therapist evaluated my symptoms and asked me to do a few simple movements.  She worked with me in her office and gave me exercises to do at home.  But the pain kept getting worse, not better.

Mike suggested I make an appointment with an orthopedist who would be able to pinpoint the problem.  He should know since he has probably seen every orthopedist in our area due to ongoing knee issues. The doctor ordered an in-office x-ray and conducted a brief exam. He concluded herniated discs from the delivery of Middle Miss were most likely causing pain.  He mentioned a few therapy techniques which would help strengthen the muscles surrounding the discs and ordered an MRI to get a better picture of the spine and discs.

The follow-up appointment concluded the discs were the cause of the discomfort and he went over the options.  He then showed me a different view of my spine and casually pointed out the radiologist indicated I had less than normal fatty tissue for someone my age.  The causes for this were listed as smoker, anemic, or myelodysplastic syndrome.

He suggested I see my primary care doctor and have a complete blood panel to determine if anemia was causing this issue.  Once home, I looked up myelodysplastic syndrome and my heart dropped into my stomach.  I read the definition over multiple times and looked up every source I could find.  I could not believe what I read.

I joined a facebook group for those suffering from myelodysplastic syndrome and was troubled by the posts and information.  Thoughts of my blood and bone marrow failing entered my daily thoughts and invaded my dreams.  I had trouble sleeping and could not muster the strength to eat much either.  I managed to hold it together for Middle and Little Misses but Mike saw the worst of my fears.  I told him we needed to increase my life insurance before I had an official diagnosis.  I was consumed with thoughts of how he would handle my diagnosis as well as care for a ten-year-old and 20-year old with special needs.  Mike is a terrific husband and father but it is a lot for one person to manage without any family living nearby.  It would also be a huge adjustment to my girls.  My stomach was in knots and I couldn’t think beyond a day.

A few days later I had my first appointment with a new physical therapist and told her my concerns. She read the report and acknowledged she would be concerned as well and suggested I see an oncologist.

Last week I had an appointment with a new general practitioner and an oncologist.  The general practitioner calmly told me she thought seeing an oncologist was a great choice, however, did not think I needed to worry.  She explained her office would run blood work to confirm I didn’t have anemia and check my red and white blood cell numbers.  She continued to explain radiologists report any issue in to cover themselves against medical malpractice.  She reassured me but I still didn’t feel one hundred percent cleared.

Surprisingly, I was able to go through the rest of my day without obsessively thinking about my following day’s appointment.  The next morning, while showering, it dawned on me I had to walk into an oncologist’s office and learn my fate.  I couldn’t eat breakfast that morning. I managed to take two spoonfuls of yogurt before feeling like I was going to vomit.

The office was located in a building I was very familiar with since my OB/GYN had his office here when I first started seeing him over 23 years ago.  I didn’t feel the same excitement walking in as I did before.  I approached the door very tentatively preparing myself for what I would witness.  There were three patients talking loudly about their chemotherapy and radiation treatments and I surmised they all had breast cancer.  I was struck at the age of one young woman and overheard her say she was going to turn thirty at the end of the month.  She is way too young for such a diagnosis.  I felt horrible for her.  It made me think at least I was in mid-life dealing with a possible diagnosis.

Two nurses escorted me back and took my vitals and brought me to the examination room.  One was not very friendly and it appeared she was training the other who was much friendlier.  I wondered if the staff had to remain distant in order to protect themselves in the case of a terminal diagnosis.  She asked me a few questions and looked over the pages of information I completed online.  She then startled me when she inquired f I completed The Advance Directive.  I responded that I had not completed it and she made it clear I needed to do it immediately.  She handed me a paper copy and I shoved it into my purse.  Now, I was really worried.

My stomach flipped as I waited for the doctor.  She entered and I immediately liked her. The doctor immediately told me she knew why I was there and reassured me.  She continued to tell me that my general practitioner had faxed my blood counts and there wasn’t any indication of myelodysplastic syndrome or anemia.  She explained she would do a brief exam, run some bloodwork, and ask a few questions.  When the questions and exam were done she reassured me, again, that she did not suspect anything and reiterated radiologists report any and all possibilities in the report.  She also went on to say that many times shadows mimic something that is not there.  In other words, MRI scans were not fully accurate all the time.

My bloodwork results were immediate (funny how some medical offices can complete them so quickly).  She brought me back to her office and confidently told me my numbers were excellent.  She advised me to have yearly labwork and if I ever suspected anything I should call her office.

A HUGE weight came off my shoulders.  The stress of the past two weeks slipped away and was replaced by adrenaline followed by exhaustion.  All the restless nights caught up with me.

Since Friday, I am trying to be more aware of all the blessings in my life.  I have also taken this experience as a reminder that I need to do more self-care for myself.  I followed it up with a sound bath meditation.

I hope all of you are taking care of yourselves as well.  We all need to practice more self-care.

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Persistence: If At First You Don’t Succeed

Success is the result of perfection, hard work, learning from failure, loyalty, and persistence. –Colin Powell

Persistent would not have been a word to describe me. Since I became a mom 22 years ago (wow, that’s a long time ago) it has defined me.

Recently I learned that persistence can lead to success.

Last August Middle Miss started community college.  During her senior year of high school, we met with the Disability Sevices Office to write her Memorandum of Accommodations (MOA). The MOA is the college version of an Individualized Education Plan (IEP).

A major difference between the two is an IEP is a legal document and therefore has to be followed by all school personnel. An MOA is not a legal document but merely a ‘suggestion’. Most schools claim professors work with students to grant the accommodations but if there is an issue it is the student’s responsibility to alert Disability Services for assistance.

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Photo by Pixabay on Pexels.com

We met with a Disability Counselor 6 months prior to the beginning of the Fall semester.  I was very impressed by the process; it was quick and efficient. We provided the required documentation illustrating how the TBI affects learning new information and accommodations that will assist her. We also presented the current IEP the local school system had in place. The counselor wrote her MOA and included all the accommodations requested with one exception. She did not approve extended time on homework explaining that the school did not permit this particular accommodation.  She did approve extra time on class projects, tests, quizzes, and in classroom work. I explained why this accommodation was needed but she still denied it.

We left the meeting pleased since the other accommodations were readily approved.  I spoke to Middle Miss and told her we would see how it goes and if this became an issue we would pursue it at that time.

The semester got off to a good start except for her one credit mandatory class.  The class was taught at a fast pace as it was only held eight weeks rather than sixteen.  Middle Miss began falling behind a few weeks in and she reached out to the professor explaining that due to her disability she needed extra time to complete her work.  The professor denied this request and suggested she speak with Disability Services.  Middle Miss sent an email, followed up with a phone call, and met with the Disability Services Counselor.  The Counselor denied her request for additional time and went on to tell her that she had more accommodations than any other students and asked if she was autistic.

Following this meeting, I became involved.  The school refused to speak with me unless they first heard Middle Miss’ verbal permission.  This development shocked me as we had Guardianship.  The Court determined we could speak on Olivia’s behalf but the school administration refused to honor this.

Our disagreement with the school pursued and we met with the Acting Director of Disability Services, the Dean of Students, and the Program Director.  They all refused to approve the accommodation AND would not explain the reason for the denial.  I appealed this decision all the way up the administration chain to the President of the school.  Again, another denial.

Soon after the President denial, I left a message for a local consumer advocacy group asking if they would do a story on this event.  A few months passed and the group contacted me stating they would not take this issue because they only represented consumer complaints.  I was a bit surprised by their refusal since I was under the impression that students were consumers.  The message suggested I contact the Governor’s Office since there was someone in his office assigned to deal with these complaints.

Concurrently, we had an appointment with Middle Miss’ neurologist and when the doctor asked how school was Middle Miss told her what happened.  The doctor was appalled and offered to write a letter in support of the accommodation.  I decided to go this route first.  The first letter submitted was denied, AGAIN. I sent an email (through Middle Miss’ account) asking why it was denied and what information was needed.

The Counselor responded and I forwarded it to the doctor’s assistant.  Another letter was submitted that took the information needed directly from the neuropsychological report we had provided fifteen months ago.  Guess what?  It was finally approved. The Disability Office had the information all this time if they had only bothered to read the full report.

There were many times during this battle I considered throwing in the towel.  I am so glad I didn’t give up and kept fighting for what

Middle Miss needed.  She is unable to fully advocate for herself and needs our assistance.

This, as well as many other previous instances, has taught me to fight for what I believe in. I will not always win but I can sleep well knowing I tried.

 

 

 

 

Higher Suicide Risk

A disturbing, yet not surprising, article was published in the Washington Post today.  Although short, the reporter detailed a Danish study conducted on young adults who either had a Traumatic Brain Injury or a mild injury sometimes classified as a concussion.  Unfortunately, the outcome was not a surprise at all.

For a few years, I have worried about this type of event happening in our family.  There has been a large increase in suicides especially among teenagers and young adults.  We have tried to be as proactive as possible.  Ignorance is not bliss.  I think our society has to do more.  Traumatic Brain Injury patients and others suffering from mental health issues need support and care.  The health insurance companies need to grant this care to those in need.

A brain injury, no matter how severe or minor, has a profound effect on cognition and the brain.  Survivors have remarked that they are more impulsive which can lead to devastating circumstances.  The brain can no longer keep them safe from harm or may overreact to an event.

We need to share our stories.  Not just the good ones.  The heartbreaking narratives have to be told and heard.  I believe we all have a story to share.  Sometimes the most heartbreaking ones have the most impact.

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.

 

 

How Yoga Helped Heal

pexels-photo-374101.jpegThis is a piece I wrote for a local yoga studio blog last year. Yoga has been very healing to me.  I have learned to breathe easier rather than hyperventilate when stressed.  I know how to stretch my muscles and joints when I am tired and achy.  Lately, I have had a different reaction to yoga.  I have left class feeling fuzzy or having a headache within an hour or two.  Whenever this occurred before I usually knew a sinus infection was developing.

The last few months this hasn’t been the case.  I am not exactly sure what is going on but I don’t like it.  Yoga has been my solace.  I used to be a runner but as I have gotten older it’s become harder to run.  I was instructed not to run much on pavement since I have herniated discs from the labor of Middle Miss and also from our car accident.  Apparently, herniated discs can get worse through constant pounding.

If anyone has a solution please share.  I so want to get the euphoric feeling back.  In the meantime, I am continuing my yoga practice in the hopes that the issue will correct itself.

It was a few years ago, sitting in a ballet studio speaking with a few other moms while our daughters were in class, that I had a conversation I now realize changed my life.

I was suffering the aftermath of a car accident that left my 3-year-old with a severe Traumatic Brain Injury, her sister with Post Traumatic  Stress Disorder, and me with a mild Traumatic Brain Injury and other injuries. The resulting stress caused hyperventilating, debilitating stomach issues, and skin breakouts that I hadn’t even experienced as a teen. There was a time that I was convinced I had pneumonia since I kept feeling pressure in my lungs. My doctor ordered X-rays, but they turned up clear. The doctor thought I was probably suffering from panic attacks and/or anxiety due to all the stress in my life. I realized he was right.

That day in the ballet studio, one of those moms suggested that I try yoga. I hate to admit this now, but my impression of yoga was that it was no more than a bunch of hippies sitting around with legs crossed and saying OM the entire time.

Since my youngest daughter would soon be entering school full time, I decided it was finally time to try a yoga class. I walked in with much trepidation and started with the beginner’s level. I told the receptionist that I didn’t have any experience with yoga. I didn’t even own a mat. I figured it would be a laid-back 90 minutes. I was so wrong.

One of the first lessons was learning to control your breath and only think about the breath for the next 90 minutes.  We were instructed to leave our mental lists and anything else on our minds at the door and focus on our breathing. I had never done this before. It was REALLY HARD!  I was so used to thinking about a million things concurrently. No wonder I was having issues. Over time I learned how to do this as soon as the class began and it was so liberating. I never realized that I could let go of all the thoughts and just breathe.

After learning how to breathe correctly I was then able to focus on me and only me for 90 minutes. Going to the studio started to hold so much hope and promise for me.  I began to understand the terms associated with yoga and yearned for more.  I began trying different class styles and learned which ones resonated for me. My stomach issues improved as well as the acne. Over time, the panic attacks and anxiety were better.

One of the best things about yoga is that competition does not exist in the studio.  Everyone comes in with different levels of experience and abilities, but we work as one to heal and rejuvenate our souls.  If I had a day that left me with less energy and it took all I had just to arrive at the studio, then no one was the wiser. I never walked away regretting taking the time for myself.

It was in the Flow Yoga studio that I found my release.  I could stretch the tension out, sweat it out, breathe, and end with a five-minute rest.  No one could yell, “Mommy”, and interrupt my introspection; my phone was left at the door. I walked out of the studio feeling rejuvenated.

I have introduced yoga to my three children and each has approached it very differently. I hope as they get older they will begin to reach for their yoga mat and discover themselves. Now, if I could only get my husband to embrace a yoga practice.

Namaste~

Brain Injury Awareness Month

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The month of March is Brain Injury Awareness Month.  There are so many brain-related events happening near me and other places and I really wish I could attend all of them.  Maybe if I cloned myself that would be possible but that won’t be happening anytime soon.

Last week, I attended the Brain Injury Association of Virginia’s 35th Anniversary Gala and the following day their conference was held in Richmond, Virginia.  I have been in attendance at quite a few of their conferences since 2006 especially over the past six years as a Board Member.  I always learn something new.  The brain is the most complex organ we have and there is so much we don’t know.  Every conference or event I participate in is a learning experience.  I always walk away with a new idea or something to research.  This weekend’s event was no exception.

Later this month, I will be attending Brain Injury Awareness Day  This is an annual event but I have only attended the past two years.  Prior to that, it was difficult to arrange child care for Little Miss and I was unsure if I should bring Middle Miss fearing the day would be too overwhelming and/or over stimulating.  Those with a brain injury know that noises, bright lights, echo sounds, just to name a few, can cause disruptions for the individual.

Last year Middle Miss was on the panel of speakers.  Read more about it in this post.  It still seems so surreal that she was given the opportunity and did such an amazing job.  I will relish that day for a lifetime.

I will most likely attend the day’s events by myself and meet up with other brain injury advocates on Capitol Hill.  I am in the process of requesting meetings with my representatives to share our story and request their support in any legislation relating to brain injury.  One of the issues I really want to address is Social Security Disability.  I will write more on that in an upcoming post.

There are other events during that week but I do not know if I will be able to attend.  Coordinating the family schedule is always a complicated task and involves a lot of juggling.  I was invited to a reception on the evening prior to Awareness Day but it doesn’t look like I will attend due to another commitment involving Little Miss’ Chorus Group.  I don’t want to miss these important milestones because I know how important they are to my children and I also know these events will not be around forever.  I am really trying to live in the moment and enjoy the times as they come.

 

 

 

 

 

 

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.