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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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.

 

 

 

 

 

 

Group Dynamics

We all want to be part of some larger ideal.  We are looking for our tribe.  That is why we choose to live in communities or select one particular church to join, or a school.  But what happens when the group we have chosen to call our own is not serving us in the way we envisioned.  Or what if one particular member is not adhering to the group “unwritten rule”?

Great things in business are never done by one person. They're done by a team of people. - Steve Jobs

According to Wikipedia group dynamics is defined as “a system of behaviors and psychological processes occurring within a social group or between social groups”.  I have always felt that groups are made of people who either have a common interest, desire, and/or hobby.  I have belonged to many during my lifetime and some have proven very successful while others have fallen away over time due to lack of communication, lives going into different directions or lack of cohesiveness.

One thing I have always looked for in a group is support.  This support could take on many different shapes such as emotional, encouragement, and helpful.  One thing I have always said that could derail these communities is a form of “backstabbing”.  What do I mean by this?  Well, if one group member has a personal motive and refuses to embrace other ideas or values then this will cause the group to splinter.  If a member talks negatively about others the members will splinter into subgroups.

 

I have always felt that groups are there to support one another through hardships and boast each other during the good times.

So what happens when there is a group member who consistently does not encourage or support another?  How does the group survive?  How should members address the situation?

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I am dealing with this issue right now and am at a loss.  I am not a confrontational person by nature.  I have fought fiercely for my children but when it comes to myself I usually back off.  My instinct is to retreat and not say anything.  Eventually easing out of the group. However, this time it feels different.  I do not like how this group is being splintered especially when we all have a single mission.  I don’t want to talk to others and get them involved since I don’t want to be talking about someone, however, I don’t know how to handle this issue.

How would you handle it?

 

 

 

 

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.

 

 

 

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.

 

 

 

 

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

 

Silver Linings

Sometimes while in the throes of trauma we don’t have the ability to notice the silver linings in the clouds. I learned this in the aftermath of our accident; the realization that we had so many wonderful people who came out in support of our family.  We received cards from friends and families, pictures from children we knew as well as children who heard our story and wanted to do something.  Soon Middle Miss’s hospital room was decorated in vibrant colors and images.  While in a coma the doctors recommended that we play soft music that Middle Miss enjoyed listening to as a way to reach her and hopefully stimulate her brain.   A truly wonderful friend found a CD that included songs with her name in it. What a truly wonderful gift.

Former neighbors came by and dropped off bags full of snacks for both Mike and I because they knew from experience when a child is in the hospital parents do not want to leave to get something to eat in fear that something will happen when they are not “on watch”.  Home cooked meals were delivered to our home for Big Miss and her Grandmother who was helping out and to the hospital for us so we didn’t forget to take care of ourselves.  Friends and neighbors were offering to help take care of Big Miss so her routine could be as close to normal as possible.  They understood that a 5 year old still needs a steady routine no matter what.

Our advocacy for Middle Miss began on day one in the hospital.  Prior to this, I was not very assertive.  I wasn’t a pushover but I didn’t always speak up when I should.  Well, having your child in a coma will definitely bring all that out.  Mike and I started advocating for her immediately.  We questioned the doctors, demanded answers when our questions were ignored, fought her transfer to another unit until she was off the ventilator, demanded second opinions, and the list goes on and on.  Through this I learned how to become an advocate and little did I know that I would become such a huge advocate for her and others suffering from brain injury.  Prior to our accident we didn’t know anything about brain injury and became quick studies to ensure she received the help she needed and deserved.

During the 10 long days Middle Miss was in the hospital and prior to entering inpatient rehabilitation so many people approached and told me how strong I was.  I thanked them but thought deep down that I had them fooled.  I later realized how accurate they were. Friends and strangers saw something in me that I was unable to recognize.  I don’t know if I would have ever known my strength had I never been through a crisis like this.

Along with learning to advocate, I became a public speaker which shocks me to this day.  I never enjoyed speaking up in class and anytime we had a project that included a presentation I would rush through it just to get out of the spotlight.  The first time I was asked to tell my story I jumped at the chance.  I was nervous but confident in the information I had to pass on and each time I told the story it got easier and easier. There are times that I broke down, and it continues to happen today 14 years later, but I know my story is powerful and use it as a tool.  I am educating my audience about brain injury, the long term effects for both the injured and her family, the special education system, and many other aspects of this ordeal.

Marriages can be very fragile or they can be as tough as nails. Luckily, we were able to see that our marriage was tough and became stronger because of this as we worked as a team to get Middle Miss the proper care and help.  She made incredible progress once we entered the rehabilitation center and those around us thought it was due to the strong family unit we had.  Eventhough we chose to go to one that was in another state and further from our home we made sure that one of us was with her at all times.  We never left her side and continually pushed all the therapists and doctors to give her as much treatment as physically possible.  My heart breaks for all the children who don’t have this support.

I don’t talk about my religious beliefs or spirituality very much but during this time I also learned about the power of prayer and forgiveness.  A great number of people mentioned that we were in their prayers or their religious institution had put us in their prayer circle. For many years afterwards I would meet someone and once they heard our story they would confide that they prayed for us.  How awesome is that?

A few years after our accident I was sitting in church listening to a sermon about when all of a sudden I felt this rush of forgiveness for the man who caused the accident.  It was the most liberating feeling.   I was still sad.  I was still angry.  But I no longer felt revenge and the forgiveness allowed me to move on and be the best mom, wife and woman I could be.

Of course, I wish this tragic event never happened but I can’t take it away.  Instead I choose to move forward and help others navigate through their own stories.

 

 

 

Grief

I have been talking and thinking a lot about grief the past few months.  It seems that wherever I turn I run straight into it.  The grief that I am speaking of is not the loss of life but instead the loss of the life I expected.

We all deal with disappointments that sometimes brings us to our knees but we get up brush it off and move forward to bigger and better things.  Afterall isn’t the saying, “quitters never win and winners never quit” ingrained in all of us?

This isn’t what I’m talking about.  I am referring to the loss of potential and a future.  When Middle Miss was 3 years and 3 months old we were involved in a horrific car accident.  She was code blue at the scene, survived and has a severe Traumatic Brain Injury (TBI).  The past 14 years have been full of challenges getting her the services she needs and deserves while also being thankful for her recovery.  I have been in constant survival mode trying to make sure she receives every bit of rehabilitation she needs as well as making sure Big Miss didn’t feel left out and receives the attention she deserves and needs.  Add on, Little Miss born seven years following our accident.

All through this we didn’t have a crystal ball that told us what the future held.  We hoped for the best and moved on to the next phase of recovery.  Now we are entering a new phase.  She is 6 months away from turning 18 and a year plus from graduating high school.  Usually at this point in a child’s life the parents have a clear role of what the future holds.  Of course, nothing is guaranteed, but we still have so many unknowns.   What does the future hold for her?

This is the grief I have been feeling for the past two years.  The grief of lost potential since we never knew what she was capable of being so young at the time of the accident. The grief that once she reaches a certain age I can start focusing on me and what I need. The grief that she may never achieve full independence.  The grief that if she isn’t fully independent who will help her when we are gone.

Hope and resilience have been my mantras and my stabilizing forces.  I, mostly, remain grateful for all that we have learned during this period but some days the grief is so strong I feel like I am drowning.

I look forward to continuing this blog and telling you our story of hope and resilience.