PCS: A Parents’ Perspective

{Editor’s note: In 2012, I was contacted by a then-sophomore in high school who was having trouble dealing with the rigors of PCS on top of trying to be a student. She asked me to help her work through things. What came out of that has been a wonderful friendship with a very resilient girl who is now a freshman in college and who still soldiers through some absolutely incredible symptoms. She always tells me how tough I am, but I think she’s tougher. It has also earned me a director on our board in the form of that very resilient girl. Who better to help me guide the trajectory of The Knockout Project? I am thankful that Alicia has such great parents who will go to such lengths in her search for good health.  –Jay}

jensensFrom left: Mike and Joy Jensen with their children Mike, Alicia, Sean, Ashley, and Matthew

By Mike Jensen

As any parent would agree, the most difficult and stressful job you could ever have is raising a child.  You take all of your experiences that you learned in life, and use them to guide and teach your children to meet the challenges that life will throw at them, and hopefully they can build a better life for themselves and future generations.  But, there is one thing you can never prepare for.  That is if your child is sick or injured.  When Alicia got her concussion in April 2012, I was concerned, but, with the little experience I had with concussions, I didn’t know what to expect.  When I was in youth sports, if someone got hit in the head, or, as we used to call it “got his bell rung”, it was no big deal.  Even if the word concussion was mentioned, the consensus for getting better was a few days rest.

I learned a lot since April 2012.  Alicia was 15 at the time, been playing soccer since she was 6, never got too badly hurt.  Not even a minor injury would set her back too far.  On this day, she was defending a play when the opposing player attempted to kick the ball down into the offensive when it struck the side of Alicia’s head.  She went down, got right up, slowly, and said she was fine.  That was right at the end of the half, so there was no real question of removing her form the game, the half was over.  After half time, she felt OK, went back out, and right at the end of the game, she got hit again.  Hit twice the same way in the same game.  After 10 years of soccer, she played her last game, and has had a debilitating headache ever since.

How does a parent deal with that?  I don’t care about the soccer, I know she loved playing, and being on the sidelines for the rest of the season was not going to be tough, her only regret is that she didn’t stop playing on her own terms. I know she wanted to play in college, but I knew she would succeed through her academics. My concern now focused on what to do next.  Hospital ER diagnosed the concussion, X-ray showed no fractures, MRI showed nothing abnormal, so we were relieved and thought it would work itself out.  See your family doctor and monitor the situation was their advice.  We were wrong.

We have been to at least 19 medical professionals, orthopedic surgeons, neurologists, physical therapy, vestibular therapy, ophthalmologists, chiropractor, massage therapists, surgeons….  All had different diagnoses for the headaches.  Tight muscles, eye convergence problems, atlas bone out of alignment, nerve swelling.  Who is right and what do we do?  A parent is never prepared for this.  The quality of life for my kid is severely diminished. There is no “How to treat your child with Post-Concussion Syndrome for Dummies”.

I saw it in her everyday. Most days she could not even make it through the entire school day without having to go home early. Or having to go in later was also a way to get through the day. I watched as she would lay in bed, in pain, with the lights off and wonder to myself “how can my healthy, active child feel so much pain, and nothing can help her?” It was not fair, and no child should have to feel it. No parent should have to feel hopeless and not be able to help their child either.

A few nights we would put Alicia in the back seat and take her to the Emergency Room at a nearby hospital where they would tell her she was just suffering a migraine and give her two Aleve and send her home. No one was helping her and no one was taking this pain away from her.

Her grades were suffering, her social life was suffering, all because she was physically suffering. She could not get her work done for class because she would come home and sleep right after school until dinner, which a lot of nights the nausea did not allow her to enjoy. And then she would go right back to bed for the rest of the nights. She was an AP and Honors student, we could not understand why she was failing her classes and not performing well all because she got hit in the head a few times. It was a very dark path for a few months before we found a little help that eased some pain.

Fortunately, there are resources.  When Alicia’s school work became affected, she was put on a 504 program where she was given consideration and extra time to complete exams and assignments.  The guidance department at her high school was tremendous in helping her get through the last 2 years of school.  Not pushed through, she earned it, battling every day.  For a parent, it was amazing to watch our child be in so much pain, and feel so hopeless because no one could help her; but knowing she was pushing through gave us strength as parents to be strong and keep pushing for treatments and a better life for our child.

This is where we are most proud.  Even on her worst days, Alicia never let on that this was going to defeat her.  She became involved in concussion awareness groups through The Knockout Project, Moms Team, the National Council on Youth Sports Safety, the PASS initiative (Protesting Athletes and Sports Safety, where she is a student ambassador and will be traveling the country next year to promote concussion awareness), Concussion Connection to get the word out that a concussion is nothing to take lightly.  She sat on a panel with former NFL  players who had concussions during Super Bowl week in New York at the United Nations.  You should have seen the look on their faces when they were lamenting their careers after concussions and she told them that there are a lot of kids just like her who were just hoping to make it through high school.  Proud moment indeed.

The Knockout Project has given Alicia something that maybe as parents we could not, understanding and community with people who were going through it with her. Posting on the foundation’s website has made us very proud, and many of our friends and relatives tell us how inspiring she is. Alicia inspires us everyday.

I always like to look for the silver lining of any situation.  Part of me thinks that some good came out of all of this.  I think that Alicia has shown to her parents that she is going to be OK.  Nothing could make a parent more proud than to know their child can take a bad situation, face it and turn it into something positive.  Would I turn back the clock to that Sunday in April and prevent that soccer ball from hitting her?  Absolutely.  But I cannot.  So we have to move forward, more doctors, more therapies, until we find the solution.

As Vice president of the student government at her High School, Alicia got to give a speech at graduation.  Through one of her bad headaches, she addressed the class about the future.  “We’re all in this together” was the overriding theme.  That’s true on so many levels.

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