Tag Archives: support

I Get By With A Little Help From My Friends

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

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

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.

PIC

What A Wonderful World

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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