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”.

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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.