Tag Archives: support

Celebrate We Will Because Life Is Short But Sweet for Certain

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So you didn’t get that job that you applied for?  Or maybe you got a C as opposed to B in that class?  Did you stay at the office late today, and yet still have piles of work to get through?  Your car’s broken down…again.  Sure these are all legitimate problems and life sure is full of them.   What matters is how we deal with them and how we come out on the other side.

Coming home in May, not even a year removed from receiving my diagnosis, I had a new outlook on life.  My first semester back at law school was eye opening.  Don’t get me wrong, I wanted to do well and maintain my class ranking, but I also refused to push myself too hard and kill myself over schoolwork.  During my hospital stay, my medical team constantly reminded me that I would never be measured by my classroom or courtroom experience.  No matter what happened after my hospital stay, I would always be defined by my determination and perseverance in overcoming obstacle after obstacle.

During the ensuing months following my surgeries, I was a spectator to life.  I viewed everyday occurrences with an open mind.  No longer did I stress about getting an A.  Did I want to?  Of course (I am Type A, after all); but I knew that if I attended class throughout the semester, analyzed the readings, studied and completed practice exams, I had done all that I could do and whatever grade I earned at the end was okay with me.

From day one of the first year, the focus is finding a job and earning exorbitant amounts of money.  Now, let me clear this up for you right now – that’s a fallacy.  Unless you finish in the top 25% of the class, you bounce around from job to job or maybe even through temp agencies and in real life, never make those millions you imagined were possible.  After my performance first year, I didn’t even concern myself with making it into the top quarter of the class, but even if I did, I’d be crazy to push myself that hard.  Life is far too short and fragile to let one insignificant thing in the grand scheme of things consume you.  I watched countless friends obsessively agonize over outlining and analyzing cases and statutes to earn the grade they were striving for.

The same holds true in practice.  I am simply amazed by how many of my peers stress over getting the hours in or getting their motion heard on the court calendar.  I just watch in amazement and think to myself “what if?”  When I witness such events, it takes every ounce of energy out of me to not say something, but I understand it – we all work hard and want good results for efforts.  If you work for a law firm, you have billing requirements that you must meet by years end, and after all, we need to keep our jobs to put food on the table.  But at what cost? It makes me wonder why as a society, we have created all of these human manufactured stressors.

I don’t mean to diminish your worries.  They are real and legitimate.  At the same time, I urge you to never stop focusing on the big picture and seeing what is truly important.  It seems to me that we too often take for granted what we have and lose sight of what really matters because we are too busy focused on nonsense.  Ever since I’ve recovered, I’ve felt like my life is moving in fast motion.  I have since learned to make sure I then take a deep breath and calmly approach the situation when I find myself getting stressed or frustrated.  My persona has changed immensely and I know this is a blessing in disguise.  Gone are the days where I rushed around, driving myself nuts to get everything accomplished by some arbitrary deadline.  I got my second chance, and I refuse to waste it by missing out on life’s joys.

For me, when real trouble arose, the question was not “do you want to have brain surgery?”  There was no option or decision to make – it was  “Chris, you need to have brain surgery.”  Not once, not twice…but four times, in addition to one gamma knife surgery.  I had brain surgery...This was my life and the cards that I was dealt and I coped with it all.  Like other situations, it’s not ideal, but unlike any of the scenarios in the first paragraph, this is a REAL problem and there’s no time to think about it or mull over your decision.  Instead, you have to rise to the occasion and learn to grow from it.  My obstacles have aged me years beyond my date of birth and I no longer stress over situations like those I mentioned here.  I’m the first to admit it – prior to my surgery, I focused on school and finding a job.  However, after my diagnosis, I realized that the important things in life are those that we have in front of us – family, friends and health.  With those three things in hand, the goals are infinite and life is good.  Yet, I still find reasons to throw on this t-shirt…

Back to School. Back to School…

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…to show my dad I’m not a fool.  Ohhhhhh, back to school.

Tap tap tap tap tap tap.  Tick tick tick tick tick.  The sounds of an auditorium style room full of anxiety-filled, Type A law students taking a final exam, typing away at their laptops and checking their watches.  Before my surgery, there was nothing quite like that atmosphere to send me into my own personal hell… but obviously a lot changed after my 1st year.  No longer did a measly exam send me into panic – my brush with death had a way of knocking out those testing butterflies.  Sitting in this room now gave me a sense of pride. I was actually completing a law school final exam only months after being told I may never achieve a mental capacity greater than a second grader.  Submitting the exam when the time was up was akin to what I’m sure a marathon runner feels like after crossing the finish line.

This was one exam that I would forever remember.  A few weeks later, I eagerly checked my grades, and next to that particular class, I saw a “NS”.  What the hell did that mean, I wondered?  I asked Ashley but she had no idea either.

Let’s back up…

As you can probably surmise, I decided it was time to try heading back to law school.  There was only so much research I could conduct, hearings that I could sit in on and reports that I could write to prove to myself that I was ready.  My effort, dedication and work product continued to impress my employers – they too, knew I should head back.  I knew it was going to be tough and unlike anything I had ever experienced during any of my schooling.  But with my one semester leave-of-absence nearing its end, there was one critical obstacle in my way.  At yet another follow-up MRI and appointment with my neurosurgeon, I was informed that there was no further growth and that the shunt was working very well.  My progress had continued to amaze the Yale medical community and without more, I was granted clearance to return to school.

And just like that, I was back into the routine.  I received my registration date and time to pick my classes and off I went.  Being ambitious as always and not wanting to fall behind any more than I already had, I registered for 15 credits.  Call me crazy, insane or even stupid for doing that – but guess what? I did it. Well – sort of.

Those five classes required me more to work harder than ever before and resulted in greater angst in a five-month period than I had ever experienced.  The assigned reading was overkill at times.  As I was still in a rehabilitation state of sorts, I was unable to easily read material the first time and comprehend it.  And to further complicate matters, these were judicial opinions, many of which were chock full of legalese and acronyms galore – thank God for the law school spark notes!  I got called on multiple times and just stared blankly or made up some incomprehensible response.  It was awkward at times.  Again, I was around classmates who I held in high regard.  I wonder what they thought when I was called on?  Then again, after what I just beat, I didn’t really care what they thought.

Despite everything, my friends still stood by me.  Early on in the semester, Ashley and my friends threw me a surprise welcome back party.  photo(5)photo 2It was awesome to see all my friends in one place and to know that they cared. Like law school, this too was a test for me as I was forced to be in a social setting, and like school, I managed.  I was completely surprised and happy to know that everyone came out and showed their support.

The rest of the semester was such a blur.  About halfway through, I was mentally done.  But I dug deep and found the extra energy needed to get through the rest of the semester.  Finally, the last day of classes had arrived and then reading week to prepare for exams. For me, that was crisis mode.  How was I to retain all of this information under the rigorous time constraints?  Even despite what I had just been through, my exams were still administered in a rigorous three-hour window. It was an experiment for me, but it was the only way for me to assess myself.

There were certain classes that I did really well in, far exceeding my expectations.  And there were others, well, let’s get back to that “NS”.

Shortly after seeing my bewildering grade, the emails rolled in and the phone rang. It was the law school calling to tell me that my exam was so poor, incomprehensible and confused that I had earned an F. Earned.  That’s nice.  But seriously, was it that poor?

My professor and the school were willing to work with me.  But there were those who I could hear whispering “I told you so…” Nonetheless, as ashamed and embarrassed as I was, I arrived at the school to meet with the members in Administration and my professor to review the exam.  A quick explanation of law school exams – you are given an extremely long story, with multiple “characters” and events (Think Murphy’s Law style – everything possible can and does go wrong in these scenarios).  You then need to write a coherent essay explaining all the legal issues involved in the story.  Where I went wrong was as clear as day to my professor and perhaps and interesting anecdote for any neurologists out there – all of the legal principles I identified were correct, but I had simply mixed up which “character” did what.

The school and my professor recognized that my exam was not a true indicator of my work throughout the semester and I was given the opportunity to retake the exam over the summer.  Otherwise, all of my hard work, the time that I spent with the professor during office hours, outlining and re-outlining my notes, taking practice exams and reviewing them my professor…not to mention losing thousands of dollars on this course would be gone.  Fortunately for me however, my professor recognized all of this and fought hard.  I recall him telling the school and I that he had previous students with traumatic brain injuries who had manifested the exact same problems on exams.  My professor suggested that I be allowed to retake the exam that was being given during the summer course. After much back and forth, I was notified that I was permitted to retake the exam that was to be administered during the summer session.

The legal concepts and theories were still fresh in my head but I still put in many hours of preparation as before because I refused to squander this opportunity.  I was so determined and prepared to nail it.  After it was all said and done, I received word from the law school that I had earned a B.  What followed was a congratulatory message from my professor commending me on my hard work and persistence.

So like you Billy Madison, I proved to my dad and my family that I’m not a fool.  I knew it all along but there were plenty of doubters.  Again though, through adversity and persistence, we can all achieve whatever we set out minds out to do.  The human brain is an amazing, resilient organ.  To think that a tumor the size of a grapefruit was in there which in turn lead me to having to differentiate between a red fish and a green turtle to taking and passing law school exams is, well, mind boggling.  After getting through that first semester back, I was more than happy to bring on more tap tap tapping and clock-watching.

How to Save a Life

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In our lives, we all have someone that we can rely on to lift our spirits and make us smile.  In the summer of 2008, I realized how lucky I was to have more than someone – I had an entire army of support and caregivers.  So without more, I dedicate this post to my guardian angels.

Dr. Piepmeier, Director of Neuro-Oncology, Yale New Haven Hospital – I do not even know where to begin to thank you and tell you what you mean to me.  From the moment you stepped into the consultation room and we met for the first time, I knew you were going to get the job done.  Your professionalism and courtesy to my family and I during such a tumultuous summer is never forgotten.  I often think of what it would have been like had another surgeon handled my case; fortunately, I never need to think about that.  My family can attest to the fact that, upon receiving the diagnosis, I was scared of the unknown, but after meeting you and hearing the plan of action prior to the procedure, I was at peace and prepared for battle.   Then and now, you provide me with a reassuring sense of confidence that I could not give myself.

Betsey, Clinical Care Coordinator, Department of Neuro-Oncology – When I received my diagnosis and spoke with you for the first time, you had a calming effect on me. I instantly knew that, as bad as the diagnosis was, the team of doctors who were assigned to my case were going to get me through this and back on my feet and doing all that I planned to do in this life.  I feel so fortunate to be able to rely on you as my go-to person to have questions answered.  But more importantly, you provided me the hope that I needed to assure me that things would get better and to keep the faith.  Your smile and positive outlook has had a profound effect on me and for that, I am forever grateful.

Aunt Linda – Thank you. You have truly played such an important role in getting me back to the point where I am at now in my life. Your patience and grace in working with me never goes forgotten. As a 24 year old, trying to re-establish the connection between what I saw and was thinking and trying to verbalize those thoughts was demoralizing.  As you were showing me those flash cards, you never lost the patience and willingness to continue to work with me even as I struggled.  Your emails made me smile and your cards with words of wisdom resonate.  You are a wonderful person and I feel extremely fortunate to have you a part of my family.

Dr. Quagliarello (Dr. Q), MD – Not only are you a great family friend, a father of one of my great friends I met in elementary school and baseball coach of Famous Foods, but you have been a great source of support, care and guidance.  I often flash back to the day I was admitted to the hospital after receiving the diagnosis…knowing my mom called Joyce, who in turn contacted you and you rushed down to the room where I was waiting to see the doctors just so that you could be there with my parents and I.  You were able to provide comfort to me in a time that I needed it the most, but I know that for my parents, you provided them with a sense of hope that I was in good hands at Yale and with Dr. P.  Thank you for always checking in on me during daily visits to Yale and the house, as well as providing support to my family during a tough time.

Ellen, Speech Pathologist at Gaylord Hospital – When we first met, I was in complete disbelief that my life had taken such a drastic turn that I was in need of speech and cognitive therapy but I am happy to have been referred to you.  The alphabet board; the flash cards; the exercises to restore my strength – what was I to do with those, I wondered?  You laid out a plan for me, never grew tired of watching me struggle and never lost faith in my ability – you knew I was in there somewhere and kept prodding and encouraging me to keep trying and practicing.  Sure enough, I did it and I owe a great deal of my recovery to you.  Thank you.

To all the nurses who kept guarded watch of me in the NICU: though I do not remember you by name, I know each and everyone of you cared greatly about me during that summer and I owe a great deal of gratitude to you.

Last but not least – to my tremendously supportive family.  Where would I be without your love, support, faith and comedic relief.  I was but a shell of the person I am today and I owe it all to you – you never gave up on me and continually encouraged me to strive to get better and persevere.

I Get By With A Little Help From My Friends

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From the day that I was diagnosed to the weeks after the shunt insertion and still to this day, my family and friends played such a huge role in my recovery.  I think we too often take for granted how important having a reliable support group can be – but they are so much more than that.  Having someone to laugh with or who can take your mind off things can go a long way during a period like this.

For the first time in three months, I had consecutive weekends filled with socializing and excitement.  On Sunday, September 14, 2008, the Giants were playing the St. Louis Rams.  I was downstairs watching the pregame show when the doorbell rang.  My mom yelled down to me: “Chris…there’s someone here to see you.”  All I wanted to do was the watch the game!  Well when I went upstairs, at the door was my friend with a tray of food.  I looked at him and then looked back at my parents – did I miss something?  One by one, all my friends came over to the house to watch the game with me. Surprise! I was in shock but elated nonetheless.  I just couldn’t believe that everyone had come by just to spend the afternoon with me and hang out like we had grown so accustomed to doing.  I had not been in a social setting with so many people in a long time and was uneasy at first.

My scars were still not healed, so I put on my baseball cap backwards to cover them up and I was ready for a great afternoon.  The last time I had seen everyone all in one place was the afternoon prior to the emergency surgery to remove the hematoma that almost took my life.  On that day, I was a shell of the person I was on game day.  My friends looked at me in amazement – it was awesome.  We joked, laughed, ate everything in sight and as if that day weren’t bittersweet enough, watched the Giants were victorious.  And speaking of joking, out of nowhere, I heard a couple of friends doing impressions of Arnold Schwarzenegger, but what do you think the quote was?  None other than “It’s not a tuuuuumor!” from Kindergarten Cop.   Some things just never change….

I was so excited that they came by to break the ice and hang out with me, but what I remember most of all is that they did not let it bother them that I was still not 100% and looked somewhat like Frankenstein.  They all could’ve gone to the sports bar to watch the game but instead they came over to watch the game with me.  Those are true friends and a sure way to make anyone feel good about themselves, no matter the situation.

The game ended too soon but I was already busy looking for plans for the following weekend.  I talked to Ashley almost every free chance I had the following week and practically invited myself up to Rhode Island for the upcoming weekend.  I had been cleared to drive but Ashley, being the nervous Nellie that she is, pleaded that she come down to Connecticut to pick me up.  Believe it or not – I turned down her offer and drove.  This was such a liberating feeling and something I had to do in order to regain my confidence with everyday tasks.  To this day though, she still shakes her head when I remind her about that decision.

Driving across the Newport Bridge and headed north towards Bristol, I had flashbacks to the last time I was in Newport – the afternoon walking the town with my mom searching for apartments to rent for the upcoming year.  As I was having these thoughts, I quickly realized how fortunate I was after living through such a harrowing life experience.  I then crossed over the Mt. Hope Bridge and felt like I was back where I belonged.  Coming over the bridge, I could see the red, white and blue painted lines on the street.  Over to my left, there was the law school.  I took a good long look at it. I told it that I’d be back, but not yet.  First things first – visit Ashley and the rest of my law school friends.

The last time that I had been with everyone all in the same place in this setting was the day of our last final.  If you’re unfamiliar with law school, you enter as a 1L and spend the duration of your 1L year with the same group of people.  I found this to be beneficial because many of our classmates became very close friends with each other.  We got each other through the many ups and downs.  And on the day of our very last final, after all appellate briefs had been written and argued and final exams completed, it was time for a proper send off at one of the local pubs.  So when I saw everyone together for the first time since that day, it was bittersweet.

I was still wearing my hat backwards to cover the scars and somewhat nervous to be around such brilliant people.  I had just spent my summer reading Dr. Seuss books and memorizing farm animals on flash cards while everyone else spent their summer in law offices.  “What was this going to be like?” I wondered.  But then I realized – I’m a warrior and though I was nowhere near as smart as those I associated with, I was now mentally tougher.  There was a “Section C” party at one our classmate’s house and there I was – laughing, talking and having a good time just as I had done months earlier.

Friends are always there to pick you up when you’re down and help you through the tough times.  For me, I was quickly shown two weekends in a row how important friends and support groups are and can be.  And that’s one of the reasons I’ve decided to now give back.

I recently reached out to the Connecticut Brain Tumor Alliance to discuss ways in which I can pay forward the gift that I have been given.  While I can never provide a medical miracle, I am able to be there to listen to those who are undergoing what I went through and show them that through their adversity, things can and will get better. But for those friends, I would be a shell of the person I am today.

To them all – thank you.  You each played a profound role in my recovery and showed me the power of friendship…and for that, I am forever grateful.

You Raise Me Up

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One of the joys for me in sharing my story with you is allowing those who have been there with me, through the ups and downs, to share their own story – from their point of view.  As I alluded to a few posts back, my inspiration through my own personal battle was my mom. 

A breast cancer survivor herself, she never missed a beat and always had the most positive outlook on life.  While always keeping a positive attitude and outlook on life, she never stopped being an amazing mother to her three children and wife to her husband.  When I was diagnosed, I could not help but to relate to her and use her positivity as my own inspiration.  I can never say it enough – thanks Mom, I love you. 

As Chris’ mom, I cannot write my version of the story from one moment.  All of the moms out there know that we pretty much all live in the moment or the day that we are in.  So my story and memories are spread out over almost 6 years, and there is not a day that goes by that I do not remember what Chris had to endure through those years.   Actually, I should re-phrase that – it is not only what he has been through, but also what he must go through for the rest of his life (Moms never stop worrying). When we are blessed to have children they are truly in our hearts and our thoughts forever.  From the time they are born to when they are fully grown, we coddle them, protect them, guide and support them, reinforcing the positives, avoiding the negative – as my husband always said “trying to never put them in a position for failure”.  But then, life throws you a curve ball you didn’t see coming, a health problem, a large one, and you realize that you can do nothing to help your child other then pray.

I am so thankful that Chris’ DNA make-up is how it is…he has been through so much adversity and yet with every new issue and problem, he handles it with such a calmness, patience, and confidence that the end result will be fine. 

I could write many different entries in detail about Chris, beginning with the initial symptoms, to being diagnosed, being hospitalized, surgery, rehabilitation, home care, more surgery…here are a few memories that I would like to share.  

Chris began to have headaches around Memorial Day 2008.  As June rolled forward, he began to experience double vision.  After numerous eye exams with doctors who were not concerned, he continued to work throughout the month.  One week prior to his diagnosis, Chris and I drove to Newport to meet with realtors to look for apartments for him to rent while attending law school.  We saw 4 apartments, walked around the town, talked, laughed, and contemplated what we saw…all the while, I knew he had double vision and was not feeling that good.  When I continued to ask him how he felt, he said, “I’m fine, let’s keep looking.”  

Just one week later, the staff at the emergency room at Yale could not understand how he was even functioning.  Their thoughts were that he had an unbelievable tolerance for pain and that his body and brain had compensated for the tumor…the crooked smile, the slight lean to the right when he walked, the double vision…in retrospect, this was the way his body compensated and allowed him to push on and never miss a beat until that scary day of the diagnosis.   The morning of the initial surgery as he hopped up on the stretcher that was going to take him to surgery he showed no fear, just confidence.  “I have to do what I have to do”.  He smiled and said “I’ll see you later “…strength, courage, and determination.  He makes me proud that I am his Mom.

After two weeks spent in the hospital following the two surgeries, Chris was released from the hospital with strict medical procedures that had to be followed at home.  If I did not agree to them, he would have been in the hospital for at least 2 more weeks.  Chris had developed a very serious, potentially deadly, infection and he needed powerful antibiotics that had to be administered 3 times per day intravenously.  The visiting nurse came to the house the first day to show me how to administer the medication.  My routine began at 7:00 AM, then again at 3:00 and finally at 11:00, for 30 minutes each dose.  The medication regimen was supposed to be for 2 weeks, but again the curse of the summer of 2008 kicked in and his blood counts were not good.  Two weeks became four. Per usual, Chris never complained.  He went along with it all. 

A Tuesday in August – it was going to be a good day.  Our visiting nurse from the Veterans’ Nurse Association came to the house in the morning as she always did once a week to check his IV port and change the bandages.  Once complete, she initialed and dated the new bandages.  That evening we had plans to go to our town green for the weekly concert.  It would be perfect for Chris – we could bring dinner, sit back in our lawn chairs and enjoy the music.  We were going to attempt to do something not medically-related for the first time in 6 weeks.  How we were all looking forward to this!  But before we could do that we had to take Chris to his scheduled MRI.  This was the first MRI done since being released from the hospital.  There were forms to be filled out and as he was in no condition to answer this questionnaire, I filled it out for him.  I signed my name as his guardian to whom questions should be asked.  My husband took a conference call in the lobby as I waited patiently for him to come out to the waiting area after his MRI.   I will never forget the way he was smiling as he entered the room (not sure how after another long head-banging MRI).  I rose from my seat and started walking towards him when I noticed his arm and asked “where’s your IV!?”  He calmly replied “She asked me if I needed it anymore, and I told her NO, so she took it out.”  I’m a pretty calm person, but at that moment I lost it.  How could the nurse ask him that question when she knew his state of mind, not to mention that we were there waiting for him?  I immediately marched back in with Chris only to be told that they were sorry for their mistake.  We were instructed to go across the street to the hospital emergency room where the doctor would meet him and replace the IV Port.  I actually thought that although it would be close, we could possibly make the concert, but in the summer of 2008, not much went the way we expected.  Once again, Chris had to be admitted to the hospital and stay the night, where the next day a surgical team in yet another sterile operating room re-inserted the IV Port back in his arm.

Another night in the hospital, the follow up MRIs, the constant questions, rehabilitation, steroids (that made him want to eat non -stop) and then the round the clock intravenous medications, all of this became our life.  I was no longer just his Mom, I was his caregiver, his nurse, his watchful guardian, and in the state that he was in it was as if he was again my little boy of 6 years old.

One of the joys that summer for Chris was to take a shower, as this was just a simple task that he was actually able to do on his own.  “It’s time Mom, wrap my arm up!”  Indeed I did.  He loved it and I dreaded it, but this was truly one of the joys of his day!  I would wrap up his IV Port in gauze bandages, saran wrap, then plastic baggies.  I feared water would get in.  My wrapping routine paid off as I guess I did a good job – no problems!  But, who would ever think that I could be a nurse?  I’ve always said, “What we will do for our children!”

This was the most difficult period in my life.  Watching my intelligent, well-rounded, happy and most determined son who at this time should have been in law school pursuing his dream, and instead I would watch and listen to him as he sat on the front porch with my husband trying to read 1st grade level books.  I would give him spelling tests for simple words, Stephen would attempt to help him find the middle C note on his beloved piano, I would try to help him as he would struggle with the keyboard on the computer to simply find the letter ‘a’ as he was so determined to write to Ashley.  His speech and words came fumbled and slow.  When I would pick him up in the afternoon from rehabilitation, he could never remember what he had for lunch that day.  I would say some possible choices and his answer was always, ”Yeah, I think that’s what I had.”  Yet, through all that frustration and the private tears shed, there was something about him that I knew, somehow, someday he would be back to my Chris again. Maybe it was his determination, struggling every day trying to re-learn and get better.  But for me, my sign was one afternoon as I was preparing to give him his medicine – he looked right into my eyes and said, “Could you please hurry this up today!”   WOW.   That was my Chris.  So clear, so quick, so witty. 

He was definitely coming back.

Me and Mom“While we try to teach our children all about life, our children teach us what life is all about.”  Angela Schwindt

Come Back

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Anyone who has siblings can relate to this next entry written by my older sister, Jackie.  Growing up, we would always get under each other’s skin and annoy the hell out of each other (apparently, I am still guilty of that).  Over the years, however, things changed and we became extremely close.  That summer, Jackie was always there for me, doing whatever she could to assist and while I was unable to express it, I heard the concern in her voice and could see she that she cared.  To those on the outside, it seemed as though I was not in my mind.  Little did they know, I was cognizant of my surroundings.   I just couldn’t express myself – I was still there, the same annoying brother.  I could imagine Jackie saying “come back, come back”.  Funny thing is, I had never left.

It’s my turn to write an entry for Chris’ blog – I have been mulling over what I would write for weeks, preparing for this moment.  I have so many thoughts, memories and emotions…they come in waves and bits and pieces.

I’ll start here…Wayne, Chris, Stephen and I went to see a Pearl Jam concert at what used to be the Meadows.  Chris wasn’t feeling 100% but we went anyway.  I remember Stephen, who was just 16 at the time, point out Chris’ eye.  We all noticed it but no one said anything, all of us secretly hoping it would just go away.  Stephen innocently pointed out how one eye seemed to cross but Chris brushed it off and we left the concert.  Chris assured us he had an upcoming doctor’s appointment to have his eye checked.  Of course, like everyone else, Chris included, we chalked it up to the idea that he needed a stronger eyeglass prescription and he needed it immediately.

Fast forward a few weeks later to what would be Chris’ worst nightmare. I can remember it like it was yesterday – where I was, the task I was doing, the outfit I was wearing (obviously) and the phone call from my father.  I left work within seconds and raced to Yale and could barely process what was happening to my insanely brilliant brother who helped me pass quite a few general education classes at UConn (yes…it’s true).

The next few weeks, Yale became my second home.  I was there every day after work, on lunch breaks and every free moment I had.  I read books, I sat with my parents – we just sat and waited and waited.  We waited for Chris to get better to come back to us.  But things got much worse before they got better.

I can vividly remember everything about the day my parents called to say I needed to come now and see Chris because he wasn’t doing well.   The fear in my parents’ voices resonates with me to this day.  (Ashley also touched on this day in her blog post; it’s funny, until she wrote about it I had completely forgotten I spoke to her.  As I said before, things come in waves and bits and pieces).  After our visit, my head was spinning but I needed to stay strong for my younger brother, Stephen.  We left the hospital, picked up our dog Chip and drove to my home in Branford; after all, Chip was a part of our family and he needed to be with us.  We got out of the car and cried and cried and waited and waited.

We later learned that a subdural hematoma had formed in Chris’ brain, explaining the symptoms he showed of a stroke and thus the need for the immediate emergency surgery.  Though Chris had survived that latest round, he contracted an infection and was released home with a grim prognosis.  In the following weeks, I observed Chris and my gut told me he was still in there but that he was trapped in his body.  He was a fighter and I had to believe he would come out of this thriving.

There were a few instances that brought me to believe this theory – here is just one story I wish to share that assured me that in time, he would be okay….

You might have to know Chris to understand this story, but I will do my best to explain.  Chris, while he is most often serious in his daily life, also has quite a silly side.  He is sarcastic, humorous, slightly annoying (sorry but you are) and finds the most ridiculous and idiotic things hilarious; once he starts his laughing fit he cannot stop.  That summer the epic film (haha), Tropic Thunder, starring Ben Stiller, was released in theaters.  Wayne and I took Chris to see the movie as we thought something funny was just what the doctor ordered.  While Wayne and I were unsure Chris would be able to understand what was going on or follow the movie, Chris certainly proved us wrong.  In my opinion the film was “eh, not so great” but definitely one the old Chris would find hysterical.  I can’t recall what scene it was but Chris started laughing quietly at first and within minutes was rolling into his old uncontrollable laughter, the kind of laughing so hard that there are tears and sore abs the following day.  Wayne and I were right there with him – we went from laughing at the scene in the movie to just laughing at Chris laughing (this was common when Chris had a laughing fit).

With tears in my eyes, I remember texting my parents from that movie at that moment filling them in on our silly movie adventure – Chris is okay.  He is going to be okay.  I just knew it.  It was clear he was in there and he was just trapped…he would be back, I had no doubt.

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What A Wonderful World

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For the next week-and-a-half, I was confined to my hospital bed, unable to communicate with the outside world, or anyone for that matter.  However, when my parents brought me my cell phone so that I could check my text messages from all of my friends and family who had been texting me, I still knew what to do with it.  Though I could not respond alone, with the assistance of my parents, I was able to send simple replies back to the numerous messages.  The outpouring of support was and still is overwhelming to me.

The date was now July 4th.  What used to be the pinnacle of summer – cookouts and parties with family and friends – was not supposed to be spent in the hospital.  Luckily however, Yale-New Haven Hospital does a great job in providing the utmost care and comfort for their patients.  The nurses did their best to make me at home and bring humor back into my life in this time of despair.  As the night crept in and the sun went down, I could begin to hear the fireworks going off in the near distance but there was no chance for a front row view this year…or was there?

Within minutes, I had the most comfortable seat in the house.  My nurse came in and she turned my bed toward the window, opened the curtains and raised my bed up so that I was sitting upright.  With my mom and dad sitting beside me, I had my front row view after all!  There were no mosquitoes attacking us that year or large crowds to fight for a good seat.  To top it all off, I scarfed down an entire dish of brownies that were brought to me.  I am still told to this day by those who were there with me that the crumbs were everywhere…my sincere apologies to the nurses and cleaning staff at the Yale NICU.

Thinking back to that night and the ensuing visits from my family and friends during those next two weeks, I feel overwhelmed to know there are so many people who care about me.  But there is one person who is deserving of an award for all her love and support then and now – my mom.

She came to the hospital every single day and always made sure I was comfortable and offering to get me anything I needed.  Thinking back on that summer, her lovingness and ability to inspire me comes as no surprise.  I watched my mother go through her own courageous battle with breast cancer and this gave me the courage to get through my battle.  She overcame surgery, radiation and chemotherapy and never missed a beat.  At the time, my sister and I were in high school and my brother was in elementary school.  Yet, she managed to keep everything under control while raising three wonderful kids, being a great wife, working, keeping the house in order and living life to the fullest.  Her courage and will to get through such a difficult time inspired me and always will.

Despite all of my difficulties, all it took was my mother’s love to show me what a wonderful world it still was…

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