Chapter 13: TBI Boot Camp

Undoubtedly, the hardest thing my wife and I ever had to do in our entire lives was to say goodnight to Kevin the first night he was admitted to the sub-acute brain injury rehab facility at JFK Hartwyck in Edison New Jersey.  We were sure he was just not ready to be left alone.  Who would wipe his mouth when he coughed?  Who would readjust him when he slid down on the bed?  What if his fever or heart rate spiked?  What if there were other emergencies on the floor?  Who would attend to Kevin since he was unable to communicate?  Somehow, we made the adjustment with the help of the nurses, therapists, and Kevin’s new roommate Troy. 
 
Troy was a big man and not very communicative at first.  That changed very quickly and though he suffered a severe stroke he maintained a dry sense of humor that helped us through some challenging times.   It was always hard to get a detailed account of Kevin’s nights since the night crew typically arrived after we had left and was gone by the time my wife or I returned in the morning.   I had the JFK number on speed dial and would often wake up in the middle of night and call to check in on Kevin’s status.  Everyone was very helpful and considerate, but there is no replacement for the one on one attention a parent can give to a child in distress.  Troy helped us fill in the gaps and became very protective of Kevin when we couldn’t be there to attend to his every need.
 
While acute therapy was primarily focused on Kevin’s rehabilitation, sub-acute therapy was a combination of rehab and training for Joan and me preparing for Kevin’s return home.  We learned how to use Hoyer lifts, clean traches, administer medicines and food through G-tubes, perform rehab exercises and operate all kinds of equipment designed to assist those who cannot do for themselves.  These things are all second nature to us now.  At the time we were as nervous as the day Kevin came home as a newborn baby without an owner’s manual.  What to do? 
 
Our time at JFK provided an excellent transition phase between a primarily hospital like setting, to preparing for a whole new life at home, complete with nurses, medical equipment, and home therapy.  By Thanksgiving we were taking Kevin home for day trips and by Christmas we were successfully making overnight stays.  Our ultimate goal was to bring him home for good, regardless of his condition.  Our gut told us that Kevin had the best opportunity to improve in the familiar surroundings of home complete with dogs barking, siblings fighting, and the love of a family that was and always will be complete and unconditional.
 
Tuesday, November 10, 2009 10:53 PM, EST
Kevin – It’s Dad
You did it.  You are resting peacefully at JFK tonight.   A parade of therapists, doctors, nurses and aids came to your room through the course of the day.  Everyone discussed their plans to care for you and help you to get better.   Get a good night's sleep.  You're going to have a busy day tomorrow.
 
I was thinking about your healing process so I did a search on the phrase "bible mind body spirit".  It brought me to Corinthians Chapter 2.
 
"Eye has not seen, ear has not heard,
Nor has it so much as dawned on man
What God has prepared for those who love him."
 
We know you love God and we'll just have to wait and see what he has prepared for you.  I pray that God gives me the wisdom to make good decisions on your behalf. See you tomorrow - Love Dad
 
The prospect of Kevin coming home was all we could think about.  Joan and I had been traveling back and forth to facilities for months.  Even one night at home would be like a dream come true.  Here is how my youngest daughter explains it.
 
Friday, November 13, 2009 12:12 PM
Hi Kev – It’s Jenny
I know Mom and Dad haven’t written u a journal entry in 3 days.  That’s why I decided to write to you today.  Today is Friday and I didn’t have school today because many people didn’t feel so good.  Right now Dad just went to go pick up a van.  The van is capable of having you and your wheelchair in it.  I moved into the guest room and now we are working on a new hospital like bedroom for you in my old room.  So far it is completely empty other than some of your things in the closet. The shower in Mom and Dad’s room is now larger so we can accommodate you in there with a wheelchair. It is huge! Today I just started wrapping presents that mom has for Christmas. I can't wait until your home for Christmas. This year Christmas is coming really fast.  You may also be home for Thanksgiving. Won’t that be fun?  Tomorrow you’re coming home for a couple of hours. It’s going to be exciting!
 
Love you Kev and I will talk to you later – Jenny
 
Bringing Kevin home felt like the launching of the space shuttle.  Everything had to be just perfect.  If any aspect wasn’t just right the mission would have to be aborted.  The first trip back home had to take place with flawless execution or we might lose confidence.
 
Saturday, November 14, 2009 7:03 PM
Kevin - It's Dad
You didn't get to come home today, but that's OK.  We had to postpone the launch due to weather conditions and a morning fever.  We did get to test drive the new van and take you for a short spin.  Mom loved it and I think with a few more trips to the gym she will be able to get you in and out on her own.  I kept trying to help her and she kept saying "let me do myself, let me do it myself".  You get your independence from her. 
 
The Villanova family came through on the van.  My friend Dave from work connected me with his Villanova college buddy Jack and before you knew it we had the wheels.  They even let me do a loaner for the weekend to make sure everything was perfect before we purchased the van.  Jack's place is real close to Villanova and I have to admit it was tough going by the college. 
 
You’re the best. I love you Kevin – Dad
 
My daughter Megan is quite the sensitive type.  Kevin was at JFK during the swine flu epidemic of 2009.  They had to restrict children under 18 from the facility.  Megan beautifully expresses what we all were feeling.  She dedicated a dance to her brother Kevin.  The video is on U-Tube and still makes me cry to this day.
 
Monday, November 16, 2009 5:15 PM
Kevin – It’s Megan
I haven’t written to you in a while, on Caringbridge at least, so I decided to do tonight’s entry. Today I was thinking about when you were at college and out of the blue you would send me a text just saying, "I love you"! It was so unexpected. Since I didn't get to see you very often and I was happy to be surprised by the comforting text. Even though I wasn’t able to see you like I used to when you were home, we became closer. I think being apart made us miss each other more and more. We learned not to take the time with each other for granted. That reminded me of the situation now, what happened was unexpected but now that you’re not fully with us, I’m missing you a lot more. I learned not to take the time I have with anyone for granted.
 
Tonight I have lyrical dance class.  For the dance we will each carry a picture.  We each picked a person that we wanted to dedicate the dance to. I think you can guess who I picked :] I can’t wait for you to see the dance.  The recital is in June, so you need to wake up soon so you’ll be able to be there.
 
I won’t be able to see you, unless you come home because JFK isn’t allowing kids under 18 to visit because of the swine flu. I don’t understand what that has to do with children, but whatever. I’m pretty sure you’re coming home for Thanksgiving so I’ll be able to see you then. We got a new van for you.  It’s basically the same except its silver and the two bucket seats are gone.  Anyway, so there’s the long seat in the back with three seats and then the middle is for you. There’s a ramp that comes down for your wheel chair.  I can’t wait to see you.  Kev, I love you<3
 

Chapter 14: Trial Launch

Towards the end of November we began bringing Kevin home.  Everyone was walking on eggshells, but we knew that we needed to get him out of the institutional setting and back into our home.  Home took on a whole new meaning.  It represented a goal as well as a destination.   Home was not as “equipped” as the institutional setting, but it was where Kevin belonged.  We would rather take the risk that something unforeseen might happen at home, rather than just get by day to day in a nursing home setting. Fortunately, I think Kevin agreed with our decision.
 
Sunday, November 22, 2009 1:20 PM
Kev - It's Dad,
Yesterday was amazing.  We picked you up at 9am and brought you home for the day.  You did great.  Your temp was stable all day and you didn't stiffen up your arms and legs which you sometimes do when you're uncomfortable.  You rested most of the day in the recliner and mom is getting pretty good at giving you your food and meds.   It won't be long now before you are home with us.  We tried out all the turns with your wheelchair in the house and everything worked just fine.   Grandma and a few of your friends stopped by the house.  It was really nice.  It’s very hard to bring you back to JFK after such a wonderful day, but we still need to get you the best care possible to continue your healing.
 
It gave me a chance to think about how far you have come.  August was really about survival.  In September you focused on controlling basic functions such as heart rate, temperature and managing secretions.  In October you had your skullcap replaced and you started to respond to mostly physical stimulation.  In November I think you are becoming more aware.  Your eyes are opening more frequently and you are occasionally peeking out at the world around you.  It also appears that you will move your hand or a finger upon request. You’re doing great.  We can't wait for you to be home again, hopefully for Thanksgiving. 
See you soon – Love Dad
 
As Kevin’s physical condition continued to improve we started to reflect more often on all that had happened.  We realized that this was a marathon and not a sprint.  We learned from the people around us that the pain would be immeasurable, but the journey could literally save our souls.  Our “normal” everyday lives were turned upside down.  Things that once seemed important now seemed trivial.   It was unfortunate that such tragedy was necessary to get us all to focus on the relationships that were most important to us.  Why is that people need to suffer such hardship to “wake up” and realize what’s important?  Human nature I guess.
 
Monday, November 23, 2009 10:10 PM
Hi Kev - It's Dad
There is so much in life I have taken for granted.  You're changing all that for me, and a lot of other people.  At the end of each workday, I really can't wait to visit you.  With you I find peace.  We talk a bit.  I read you the newspaper and we take a walk down to the cafeteria or outside to the "turtle" trail on the weekends.  We visit with your roommate Troy, and I make sure that he is taking care of my boy.  We have a whole new set of friends at JFK. They all love mom, of course.
 
Today I met a woman whose daughter is at JFK.  We worked for the same company for about 15 years, and though we never met we know a lot of people in common.   I am always amazed that we are all connected. 
 
A lot of your friends will be home for the weekend.  They can't wait to see you.  We are bringing you home on Saturday and they are welcome to come over between 2-4 pm to visit.  I'm sure it will brighten your spirits. 
 
See you tomorrow - Love Dad
 
My wife and I became obsessed with bringing Kevin home.  We knew he was getting excellent care, but we were now more in tune with his cycles.  He would get into uncomfortable positions as the result of a hardy cough and only one on one attention could reduce the risk of injury.  The nurse to patient ratio kept lingering in my head.  How can one person attend to twelve patients simultaneously?  What happens when they need to go on a break?  In reality Kevin still required care not available in a sub-acute setting, but that’s not how our health system assessed the situation.  I needed to start planning for other arrangements.  We needed to get him home before some unforeseen circumstance compromised his health.  Our first significant trip home occurred, how appropriately, on Thanksgiving.  
 
Thursday, November 26, 2009 7:37 AM
Hi Kevin – Both Mom and Dad are here for you on this Thanksgiving morning!
Today is the perfect day to extend our thanks to so many.  We have received many gifts from many people and we are eternally grateful.  It’s hard to thank them all individually, but as a family we hope they know we are truly humbled by the generosity we have experienced.  It has brought us closer to God and closer to each other.  We have directly experienced “the body of Christ” and the spiritual gifts that God has given to our community. Paul says in Corinthians:
 
“There are different gifts but the same Spirit … Through the Spirit one receives faith; by the same Spirit another is given the gift of healing, and still another, miraculous powers.  Prophecy is given to one; to another power to distinguish one spirit from another … But it is one and the same Spirit who produces all these gifts, distributing them to each as he wills.”
 
We have experienced so many of these gifts from God in the last several months and we are thankful to God for the presence of His Spirit in our community.  We thank everyone for sharing gifts and prayers no matter how large or small.  Without them we could have never made it this far.  We thank God that we are able to bring you home today.  Being together is the greatest gift of all. 
 
We Love you Kevin – Mom and Dad
 
Sunday, November 29, 2009 7:30 AM
Hi Kev – It’s Mom
Good Morning!  We just can't wait to come and bring you home again today.  Daddy and I have the routine down now.  We thought this holiday was going to be difficult but it has been wonderful!  Being able to bring you home has given us much to be thankful for! I couldn't help but marvel at how well everything went. Grandma and your aunts ran the show and we all relaxed and were able to just be together.
 
Yesterday, many of your friends came over to visit.  The Italian American Club from Red Bank brought over food, snacks and soda!  The kids had a chance to say hello to you, hang with each other, and enjoy some good food!  What a wonderful group of friends you have!  You look so good, but it’s not easy for them; not being able to communicate with you.  It was beautiful when we all said the rosary together.  It reminded me of when you were in ICU at Jersey Shore Medical Center and we would say the rosary in the hallways.  You come from a long line of love Kevin.  You have a lot of family and friends who are standing by and supporting you through this journey.  I will post a couple pictures from this weekend.  It was good to have you home with us - all together again. 
 
We love you – Mom
 

Chapter 15: What You Don’t Know

It’s funny how you don’t know what you don’t know.  On December 1^st of 2009 one of the leading doctors for disorders of consciousness, Dr. Giacino, came to examine Kevin.  He was in the process of leaving JFK to join a research team associated with Harvard University .  I found out some time later that he had been part of team that was doing research in fMRI and DBS – deep brain stimulation.   They had woken up a man that had been minimally conscious for over five years using some new procedures that were not yet approved by FDA.  He was probably evaluating Kevin as a candidate for a new study, but we were unaware of the implications.  The shunt in Kevin’s head disqualified him as a candidate, but I will always remember one of his last statements.  Kevin has about a 40% chance of regaining consciousness.  That was the highest odds I had heard to date.  What did he base it on?  How could we get there?  Would we ever get the answers? It was not yet our time.  Now was time to just enjoy the holidays with Kevin and our family.
 
Tuesday, December 1, 2009 9:58 PM
Hi Kev – It's Dad
There have been a lot of activities over the past several days.  Dr. Giacino examined you at JFK.  He recommended several tests for hearing and vision.  We are looking at some different meds as part of a study being done at the Moss Institute in Philadelphia.  We are also investigating research going on at Columbia Presbyterian related to functional MRIs to see how you respond to visual, audio and tactile stimulation.  You sure have a lot of new faces on the "Special K" team.
 
In the end the only thing that matters is your wellbeing.  I am trying not to think so much about the future or the past, but how you are doing right now.   Understandably it’s hard for people to relate to your condition.  I try to boil it down to the basics.  You are a beautiful person, always have been and always will be.  You have always had a passion for praying, music, exercise, and being with good friends. None of that changes. 
 
Oh, by the way.  The lift went into the garage today.  Amazing!!  We'll try it out this weekend, can't wait. – Love you, Dad 
 
Joan and I often wondered what Kevin’s was experiencing day to day.  A friend sent me a link to a video that was taken of a neuroscientist that had suffered a stroke.  I watched the video over and over to get some clues.  We continued to conduct tests that might give us some key information that would un-lock some clues to the nature of Kevin’s condition.
 
Monday, December 7, 2009 10:27 PM
Kevin – It’s Dad
What a blessing to have you home again this weekend.  We are all adjusting to the new routine.  It was snowing on Saturday and we feel so fortunate to have the lift in the garage.  It worked like a charm.  I can’t imagine what it would be like trying to push your wheelchair through the ice and snow.  Thanks to all those who made the garage lift possible.
 
I keep wondering what's going on inside your brain.  We are constantly trying to learn about research that addresses your condition.   You always look like you’re just about to "wake up".  Sometimes your eyes are half open for extended periods of time.  
 
There are some people in your condition who remember nothing about their situation when they emerge into consciousness and others seem to recall very specific details and remember many of the things that happened while they were “asleep”. 
 
I had a friend send a link to a website.  The scientist in the video describes in detail what her brain injury was like.  It is both scary and hopeful.  She talks about the functions of both the right and left brain. The right brain is Mom and the left brain is Dad.   I’ve always wondered why Mom is so connected, lives in the moment, and doesn’t sweat the small stuff.  As you know from one of my songs “Me, I’m a fighter, I’m a loner, I’m a dreamer, I’m writer.”  As with all the things that you are bringing to our awareness, this video is changing how I think.  By the way you are the best of both of us.
 
I pray to God to continue to hold you in his arms. – Love, Dad
 
Saturday, December 12, 2009 11:31 PM
Kevin – It's Dad,
You've been very busy the last couple of days.  On Thursday you went over to JFK Hospital to test your hearing and vision.  Evidently your hearing is better in your right ear so we will work with that in therapy.  We also learned that opening of eyes and vision could be two separate issues.  The nerve that controls eye opening and eye movement has been damaged, but that can sometimes heal over time.   Your eyes are fine so we need to do some additional tests to see if the part of your brain that controls vision was damaged.
 
Yesterday your trache came out by accident so we replaced the plastic trache with a metal one.   Sometimes this type of trache results in less secretions.  We'll keep track of whether you do better with the stainless steel one.
 
Today you were home and we put up the Christmas lights and decorated the tree.   Now that you are home on weekends during the day we have started to spend more time together as a family.  Kevin you are bringing people closer together in so many ways you can't imagine. – Love, Dad
 
Each time we brought Kevin home we wanted more.  We started taking him home a day at a time.  By the end of December we wanted Kevin home both days of the weekend.  We eventually graduated to overnight stays.  Both weather and fevers became the enemy, but the writing was on the wall.  It was only a matter of time.
 
Friday, December 18, 2009 10:03 PM
Hi Kev – It's Dad
It's Friday night.  It’s the weekend!  That means you come home.  We plan to have you home both days this weekend, weather permitting.   There's a snowstorm expected tomorrow so we'll just have to play it by ear.   We had a new piece of equipment delivered to the house today called a Hoyer.   It's like a hammock with a crane attached.   Hopefully it will make it easier for us to get you from your wheel chair to the couch and recliner.   Jenny likes it a lot and I've been raising and lowering her again and again to make sure we're using it correctly. 
 
Next Wednesday we made an appointment for an MRI.  Just looking for more clues on how things are healing and what new things we can do to try to help you get better.   
 
Dylan, Megan and Jenny are so excited about Christmas.  I think they have their traditional Christmas morning play planned.  I’m sure it will be really special this year. –
Love, Dad
 
We constantly battled with the elements that winter.  Getting Kevin home safely was always in the back of our minds.  What would normally be an occasional travel inconvenience became major obstacles to conquer.  We would not be denied.
 
Monday, December 21, 2009 4:14 PM
Kevin – It's Dad,
When you were a small boy you used to say that when it snows it's like a blank coloring book waiting to be colored, and when the snow melts it’s like the colors being filled in.  Snow days have always been your favorite and I will always look at the first snow of the season in that way.
 
This weekend Dylan and I went to the Rutgers bowl game in Florida.  You and I tried to make plans to go to their first big bowl game a few years back in Arizona but we just couldn't make it happen.   I didn't want to miss the opportunity this time so we went in spite of the storm.  Rutgers came through and won by over 3 touchdowns.  More amazing than the win was our travel plans.   When I woke up on Saturday I was sure we would be delayed with the big storm coming.   Dylan and I assumed there was no chance we were getting home on time with over a foot of snow on the ground back in Jersey and we started to make plans for a layover on Sunday.   When I woke up Sunday morning I checked with Continental Airlines and the recording said the flight was on time – yeah sure.  We got to the airport and looked at the departures board.  Cancelled, Cancelled, Cancelled, but our flight was still on time at 10:40 to Newark Liberty.  I was sure we would spend the morning out on the runway.  We actually arrived 15 minutes early. 
 
The storm also resulted in you being home longer than we expected this weekend.  I'm sure Mom has some good stories to tell when she gets a chance. – Love, Dad
 
Tuesday, December 22, 2009 9:31 PM
Hi Kevin – It’s Mom
We were so excited about seeing you on Saturday.   They were predicting lots of snow for Saturday into Sunday.  I really hate to change plans based on the weatherman and you know how stubborn Mommy can be, so I decided Saturday morning to come and get you even though Daddy and Dylan were out of town.   As predicted, we got over a foot of snow and yes we were snowbound overnight!  Thank God for Grandma!  Together we made a great team.  Anthony next door made sure our driveway was clear just in case.  
 
Nighttime is a challenge.  You slept in our bed.  It’s been a long time since you did that! We propped you up but by 3am you were almost flat on your back so you were uncomfortable until about 6am.  Grandma and I got you up early into your chair and then you were comfortable again.
 
Oh, I know how much you love the snow.  I brought you close to the window.  The wind was howling and the snow was swirling out there.  I opened your eyes for you to see it.   When you were little you got excited when it snowed because it could mean you had a day off from school and as an adult because you could go snowboarding.   Everything is just a little different these days, but still good.  We can still get excited about the snow.
 
On the way home from JFK there is an abandoned strip mall.  Someone must have done many crazy 8 turns in the snow.  It reminded me of when I let you do that in the empty Camelback parking lot last year.   Picture that in your mind Kev.  Let’s go back there together again in our minds.  We want to bring back some color to that "coloring book" in your mind.
 
I love you Kevin – Mom
 

Chapter 16: Ah Christmas

Ah Christmas, I cry just thinking about how important it was to have Kevin with us on that first Christmas after his accident. We have many Christmas traditions and having Kevin with us made each ritual take on new meaning.  My other children really rose to the occasion.
 
Thursday, December 24, 2009 7:00 AM
Dear Kevin - It's Jenny,
It's the morning of Christmas Eve.  I am so happy that you will be home today.  We are going to have a white Christmas.  We haven't had that in a while.  When you get better the first thing we're doing is going snowboarding.  
 
Me, Megan and Dylan are working on our traditional "Christmas Thing" as we call it.  This year's is great.  When we do our "Christmas Thing" it usually includes a game or two, a skit and an activity to earn presents.  This year's is going to be really special.  I think you will like it.
 
You will be with us when we put the baby Jesus in the manger.  We have three of them.  One is the wooden nativity set.  We have another in the house and the third is the life size one outside.  I can't wait to spend Christmas with you. – Love, Jenny
 
Sunday, December 27, 2009 9:08 AM
Kevin - It's Dad,
It's Christmas time.   We have had you home several days in a row so I haven’t felt the need to write to you. What a joy it’s been!  We tried to keep all the traditions that our family has practiced since you were a small boy and then some.   On Christmas Eve grandma made the traditional Italian fish with pasta dinner and then you came with us to the 8pm mass at St Leos.  We usually go to the midnight mass, but since this was your first time at mass since the accident we wanted to avoid the crowds.  It was an awesome feeling to have our entire family together to celebrate the Eucharist.  When we got home from mass you and I watched “A Christmas Carol”, the Reginald Owen version.   That’s something I do every year while mom is organizing presents and putting baby Jesus in all the mangers around the house.   
 
On Christmas morning Jenny, Megan and Dylan had an entire production planned including a game show, a Kevin video and other contests that led to gift openings followed by a pancake breakfast.   Your eyes were about a quarter of the way open most of the time which was longer than usual.  I got the feeling you didn’t want to miss anything.  In one of the games we had to shoot a dart at a dartboard and based on how close you came to the bulls eye you would get either a hard or easy Christmas trivia question.   Mom helped you aim and shoot and all three times you hit the bull’s eye.  It made no sense because when mom tried it by herself she could barely hit the dartboard.  Go figure.   Later we all sat down to a roast dinner with mash potatoes, brown gravy, Italian bread, and lots of dessert options; again courtesy of grandma.
 
 On Saturday Aunt Denise and Aunt Shelley’s families came to have dinner and exchange gifts.  As usual, we had lots of food and lots of noise, but you seemed to really enjoy it.  The highlight had to be when Megan came up with this hairdo by putting empty water bottles on all the girls’ heads and then covering the bottles with hair, and putting a pony tail on top to keep it in place.  It’s hard to describe, but they all looked like the wife of Frankenstein and I took a picture that I’m trying to convince Mom to post on Caringbridge. 
 
Next, we had a grab bag gift exchange where everyone selects a gift based on the number they pick out of a hat.   You can pick a gift from the pile or you can take a gift from somebody else who went before you.  Usually it’s pretty cut throat, but nobody wanted to take your I-tunes card since everyone knows how much you like music. 
 
At the end of each day we had to bring you back to JFK.  It was so hard, but it has become part of the routine.   See you later today – Love, Dad
 
Tuesday, December 29, 2009 6:42 PM
Hi Kev – Mom and Dad
This Christmas we tried really hard to do all the things we always do and for the most part mission accomplished.   Going to Christmas mass was a big discussion in our family.  Were you physically ready?   Could we get you in an out without complications?   What if the Church was too crowded?   By the way you did great!!  We also recognized that we have an amazing community of believers that all deeply care about you and want us to know they are praying for us.   That includes people of many different faiths.   Father Quinlan noticed that you were there on Christmas Eve and in his homily he spoke about the way our community has become closer as result of your accident without naming names.  You looked so peaceful at mass taking in all that is so much a part of our Christmas tradition.
 
We have always realized how important prayer is for your recovery so this Saturday, January 2nd at 2pm in St Leos Church we want to have a 2nd  prayer service.  You weren't able to attend the first one, but hopefully you will be able to come to this one.   Father John will lead us in prayer for your healing.  All those who have supported us so faithfully are welcome to join us in prayer with you and for you.
 
We love you Kevin – Mom & Dad
 

Chapter 17: New Year New Hope

2009 had come to end.  I remember thinking “Thank God”!   With each New Year comes new hope and of course ours was a “Journey of Hope.”  We were worrying a little less, but missing a lot more.  With each new season came old memories that we each expressed in our own ways, but no pain is greater than that of a mother’s when it comes to missing her child.
 
Friday, January 1, 2010 10:07 PM
Dear Kevin – It’s Mom
Happy New Year!  I don't know how to break the news to you that it is a new year.  Five months have passed since your accident.  I wish we could suspend time or better yet turn it back!  Wouldn't that be nice?  You know how our family loves the movie Frequency.  Remember how Jim Caviezel was able to tell his Dad (Dennis Quaid) 30 years later which way to turn in the burning building to save his life?  Wouldn't that be nice if we could tell you not to take a spin on your skateboard on that morning?  But we can't now, can we?  And here we are 5 months later.   How our lives changed in an instant.  
 
We couldn't spend the whole week between Christmas and New Years at the Pond House but we did get up there for a couple of days.  We went skiing Kev.  It was so hard to do that without you.  Daddy kept telling me, "don't think, just do'".   I kept repeating that in my mind all day long.  Don't think?  How could I not think about how much you love snowboarding?  How could I not think about the way you stand on line, or the way you swish swash down the slopes in front of us?  How could I not think about how excited you get when you land a huge jump?  How could I not think about how you try to teach Jenny heel and toe?  How could I not think about how proud I was of my family last year when we were all together on the top of the mountain, all skiing together and nobody fighting?  It’s hard not to think about those things.  But thinking about our yesterdays with you is ok because we have many precious memories.  Going downhill was easy, but life is all about the climb these days.  Now we're going to climb those mountains together and make many more precious memories. 
 
See you tomorrow Kevin. – I Love you, Mom
 
For a good part of our adult lives our spiritual life was kept separate from our daily secular existence.  This was not something we consciously did, but unfortunately more of a function of how our society operates these days.  It’s a very serious problem when we get lost in the minutia and lose site of the big picture.  God is the big picture and we should be focused on how to be with him in the here and now, as well as the hereafter.  Kevin changed all that for us.  The big picture came first and there was no time left for things that really didn’t matter.
 
Thursday, January 7, 2010 7:41 AM
Dear Kevin – It’s Mom
Last Saturday at 2:00, many people of many faiths in many different places were praying for you.  At St. Leo's, Father John put together a beautiful prayer service with the Blessed Sacrament exposed.  How awesome is our God! In your own words,
 
"God is the one thing that I know no one can take from me.  Even if I was locked up in a terrorist prison no one could take God from me." – Kevin
 
It might feel like so much has been taken from you but in your own prophetic words, no one can take God from you.  That is comforting for us to know.  We pray that you are communicating with God right now, and that you are asking God to help you to heal. I pray that you are at peace in God's arms.  That Mary is holding one hand and Jesus the other.  The angels are hovering over you and your caretakers to make sure you are comfortable. 
 
I also pray to Pier Giorgio Frassati to intercede on your behalf.  I have been learning a lot about him these days because Aunt Maria gave me a CD, a video and a book about him.   He is not a saint yet, but was declared Blessed by the Church.  He is definitely someone you would relate to.  He was a devout Catholic who had a great devotion to the Blessed Sacrament.  He was good looking, athletic, generous and humble.  He had a lot of friends that were drawn to him.  He practiced his faith in a gentle, quiet way that drew people closer to God and their faith.  So we pray to Blessed Pier Giorgio intercede on your behalf and bring you back to us. 
 
We need you Kevin.  Your friends need you.  This world needs you.  When you are able to read these journals someday, and I truly believe that you will, you will know how much we all love you, how much we need you, and how much we are learning from you.
 
Keep talking to God Kev because you are right.  Nobody and no circumstance can take Him from you. Keep up the good work. – Love, Mom
 
Life started to return to its normal rhythms, but now and then another unexplainable coincidence would occur.  I didn’t know what to make of these events, but I truly believed that God was trying to communicate through these occurrences.  I didn’t want to miss a single message, but at the same time I recognized that the human brain has a way of creating its own reality.  As the bible says, “judge a tree by its fruits.”  Of course, that’s easier said than done.
 
Wednesday, January 13, 2010 9:56 PM
Hi Kevin – It’s Mom
First of all, you are doing great!  The problem is that you are so medically stable that now we want you to do more.  I'm sorry.  It’s just human nature.  I remember the night of your accident; I just prayed that God save your life and that would be enough.  Now I pray for more.  I pray that you wake up, turn to us and wonder what all the fuss is about.
 
On the way down to Washington DC last year, I had brought two books to read, Twilight and The Shack.  I was at the end of Twilight and gave The Shack to a woman named Fe who I just met and was sitting next to me without a book to read.  She finished it quickly and remarked that she was going to get it for her friend who had recently lost her son.  I told her to give mine to her friend.  Fe asked me to sign the front of the book, so I did.  I can't remember what I wrote but I must have also left my phone number.   That was in January.  Then in July, ten days before your accident, Camille called to thank me for the book and to say how much it had turned her life around.  We were talking and I felt so sad for her, at a loss because I didn't have words to ease her pain.  After the phone call, I grabbed Dylan and hugged him tightly.   I just could not imagine going through what Camille was going through.  How ironic because ten days later, I was.  
 
Some of your friends and mine are questioning how God could have allowed this to happen to you Kevin of all people.  I am so ill equipped to provide answers to their questions.  I can only refer to Pier Giorgio Frassati for some insight.
 
"It (life) is a difficult battle, but we must strive to win it and to rediscover our small road to Damascus in order to walk toward the destination to which we all must arrive.  What is clear is that faith is the only anchor of salvation and we must hold tightly to it; without it, what would our lives be?  Nothing, or rather, wasted, because in life there is always suffering, and suffering without faith is unbearable.  But suffering that is nourished by the flame of faith becomes something beautiful, because it tempers the soul to deal with suffering."  – Pier Giorgio Frassati
 
PS.  One of the first people I called the night of your accident was Camille.  Why?  I hadn't ever even met her, but I knew she knew my pain, had suffered greatly and was leaning on God to come out on the other end of it. Kevin, we don't know or understand your pain right now but by God's grace, let us be nourished by the flame of faith in order to travel along with you on this journey, our small road to Damascus.  And only by faith and God's grace will it be possible for you to wake up. – I love you Kevin, Mom
 
By January of 2010 Kevin’s visits home on weekends became a normal occurrence.  We were biding time for the day when he would come home permanently. 
 
Sunday, January 17, 2010 7:20 PM
Hi Kev - It's Dad
Today is Sunday.  I love Sundays.   Life almost seems normal.  We pick you up in the morning before the kids get up.  Mom and I get coffee at Dunkin Donuts and the nurse at JFK has you ready for us when we arrive.  Mom makes crepes with chocolate and bananas before we go to mass.  After mass I pick up Grandma and she brings over the Italian gravy, meatballs and sausage for a macaroni dinner.  I work out at the gym and I always come home in a better frame of mind.  Just ask Mom.  You hang out on the couch and watch football games.  It looks like you're just sleeping like old times.  Jenny cheered at a basketball game and Dylan and Megan went to a sweet 16 party today.    It all seems so normal.  Everyone is doing what they always do and the most important thing is that we are all together. – I love you, Dad
 
We were not out of the woods yet.  We had started to get comfortable with Kevin’s health, but it’s very difficult to diagnose a problem when someone can’t communicate.  That’s when we must rely on the professionals.  Joan and I are eternal optimists.  We tried to view any change in a positive light.  We were thrilled that Kevin was beginning to open his eyes more often.  We eventually figured out that his eyes would open when he urinated.  Kevin was in pain.  The pain of urinating, probably a urinary tract infection or UTI, would make Kevin open his eyes.  We loved seeing his beautiful eyes, but couldn’t bear to know that he was in severe pain.
 
Monday, January 18, 2010 9:20 PM
Hey Kev – Dad again
Tomorrow you're going to have a procedure at JFK that will require general anesthesia.  Something is going on with your urinary track and we want to find out what it is since it seems to be causing you pain. 
 
We'll ask everyone to storm heaven at about 3pm tomorrow, Tuesday.  It's a standard procedure, but in your condition there are always risks.  We pray that it's something simple and we can take care of whatever is causing the problem. We love you – Dad
 
They scoped Kevin’s urinary tract, found some small stones and removed them.  Other than that, there wasn't any blockage. Thank God.
 

Chapter 18: “Winks” from God

My wife and I have always believed that life begins at conception and ends at natural death.  I think society often tries to define the issue of life in scientific terms rather than moral and ethical terms.  We look to science to tell us when life begins and when life should end, but science is constantly changing.  The medical community saw no definitive cure for Kevin’s condition at the time of his accident.  Maybe it would be best to just let him return to God.  Was that God’s plan?  Would a cure be unveiled next week, next month, or next year?  No one could answer that question.  Ultimately, life is a gift from God.  He gives it as a gift and will take it according to His will.  What society had made so complicated seemed so clear under these new circumstances.
 
Saturday, January 23, 2010 1:36 AM
Kevin – It’s Mom
We went to the March for Life today in Washington.  Wow!  So many young people!  They were loud and they were having fun.  Your friend Rob A. came from Catholic University and found us in that huge crowd.  I kept thinking about years past when the two of you came on the bus.  You two have grown up together and have the same values and he misses you very much Kevin.  I loved that he met up with Aunt Carol and we got to spend time with him.  It was a good day.   
 
Kevin, I appreciate life more than ever. In all these years since 1993, I have supported this cause.  It became so clear to me after I had three miscarriages, the importance of the dignity of every human life.  And now, I can say first hand, that life is precious no matter what condition.  You are ALIVE!  Ok, so your life may not have "quality" as others may define it, but you are ALIVE!  We appreciate the sanctity of your life!   
 
I am sitting here, writing this, looking at pictures of you.  Daddy said it so beautifully last night.  He wants more pictures of you as you are today, right now.  We want to celebrate your life as it is right now.  No matter what condition, your life has dignity and you deserve that respect.  Kevin. – We love you unconditionally, Mom
 
One night, in the dead of winter, while at JFK, I had the chance to sit down with one the fathers whose son had suffered a brain injury, and the two of us just reflected on the twists and turns our lives had taken.  One of my wife’s favorite quotes is “Honey, you have a plan, and God has a plan, and your plan doesn’t count.”
 
Wednesday, January 27, 2010 10:00 PM
Hi Kev – It's Dad,
You looked so good tonight.  Your curly red locks are back.   It seems like you are in a peaceful place.  You have entered into a new phase of rehab.   Mom and I are now trained to do more of the therapy and you will be staying home overnight on weekends, less back and forth.   I don't even ask if you had a fever in the morning and today you were able to swallow some chocolate ice cream safely.   Removing the trache is a topic of discussion, but I think we'll keep it in until after flu season.  
 
There are a lot of young people in JFK right now.  A boy from Rutgers who fell several stories and hit his head, and another boy from Hawaii that was hit in the head while surfing.  There is a young boy down the hall, and two young girls.  No one likes to ask the question, "What happened?" but sooner or later we all open up to each and tell our stories which are all too similar. 
 
Tonight I had a conversation with one of the dads at JFK about coincidences.  I thought about all the coincidences over the last six months.  The 911 call going to your friend Eric who is an EMT as you fell right in front of his house.  The ambulance that came to your rescue was staffed by two of your high school friends.  Then getting connected with the family from Lake Naomi whose son had been in a coma, and being assigned the same room at Kessler as that young man.  I told him about my friend and colleague at work having the room next store to yours at Kessler after suffering an aneurysm, and about waking up one night and seeing a special about coma on the Discovery Channel rerun again and again. The doctor on that special is now your doctor at JFK.  This Sunday, on Grandma's birthday, Maria Esperanza will begin the process of being canonized a Saint.  She is from Venezuela, but the process will begin at St Frances in Metuchen NJ, just two miles from JFK where you are now.  One of her contemporaries contacted us and would like to come pray for you.
 
Kevin, there are no coincidences.  That's God's tool for revealing His will to us.  We will all "Storm Heaven for Kevin" at 3pm on Sunday.  There is deep tradition of healing miracles in the Catholic Church associated with the Communion of Saints.   Jesus says many times in the bible, "Your Faith Has Healed". – Love you Kev, Dad
 
In the most trying of times humor is sometimes the best medicine.
 
Thursday, January 28, 2010 10:16 PM
Kevin – It's Dad,
Can I talk to you privately? You’re coming home for the full weekend and I don't know what's happened to your mother.  It's like when you were an infant and everything had to be perfect when you came home from the hospital.  I remember she had me painting the room until two in the morning and putting up boarders and drapes.   I was still putting on the final touches even after her water broke.
 
Well, no boarders and drapes, but there was a giant to do list when I came home from work today.  Hook up the computer in your room.  Take a bunch of things up to the attic.  Set up a TV in your new room.  Get all the equipment ready.  What’s with this?
 
I have to tell you a funny story.  We were looking for a computer cord in the basement.  I opened up a closet we don't usually frequent and talk about gross.  Mom was a Y2K (year 2000) worrier.  I found huge cans of peaches, sauerkraut, and pork and beans that were over 10 years old.  Welcome to 2010.  Some of the cans had leaked and I almost gagged.  I called mom and luckily it was garbage night.  We started chucking cans into large black garbage bags.  Of course mom chucked one on the cans right on my foot.  Anyway, we are still a dysfunctional family so nothing has changed.  I can't wait until you come home this weekend. – Love you, Dad
 
God continued to put people and solutions in our path as we traveled on our journey.  When I first met Kevin’s roommate I wasn’t sure of his mental capacity following his stroke.  Over time I realized he was all there on the inside, though he didn’t have full  control of his body externally.  He became Kevin’s big brother during the hours when we couldn’t be with him.
 
Tuesday, February 2, 2010 8:24 PM
Oh Kevin – It’s Mom
Kevin, I need to tell you about your roommate Troy.  He has been a big part of your life at JFK.  On Monday after there was much commotion, he came back into the room and asked so sincerely how you were doing.  There was so much compassion in his voice that it touched me deeply.  He truly cares about you and he is your guardian angel at night.  He says you "talk" in your sleep.  I remember the first night when we had to leave you at JFK without staying over.  I was so distraught.  Well, what I perceived as an issue was so different from what turned out to be a huge blessing in disguise!  Troy can speak up and is very protective of you.  After a few days I realized I didn’t need to worry (as much), because Troy was there to watch over you.  We love Troy and I know you will too.  Today, I didn't even realize that it was one of your old phones that we gave to Troy.  After we were playing with it to make it work we realized that it was yours by the ringtone.  He was touched and he thanked you for it. Just one more "wink" from God. – I love you, Mom
 
Someone along the way had dropped off a book that described coincidences as “winks” from God, His way of letting us know that he is there and in control.  So each time another coincidence occurred, Joan and I referred to it as another “wink” from God.
 
Monday, February 8, 2010 3:16 PM
Hi Kevin – It’s Mom
Father John from the Church of Holy Innocents came to pray with you last night.  When you were at Jersey Shore, we were going to Holy Innocents Church in Neptune.  It was right down the road from the hospital and we loved listening to Father John's sermons.  After Daddy mentioned Maria Esperanza in his journal entry, a friend asked Father John to come and see you.  She knows him well and Father John actually gave Maria Esparanza her last rights!    He is young priest and he had kind, comforting words to say to you, just another wink from God.
 
I've been thinking about Valentine’s Day.  Another holiday will come and go. Valentine’s Day is all about our love for each other and protecting each other’s hearts.  Jean Pierre Camus wrote " Blessed are the hearts which can bend; they shall never be broken".  I need to remember this.  Almost every day I feel as if my heart has been bent and twisted into a bundle of knots.  But it will not be broken.  That is too final.  God is protecting all our hearts so that won't happen. God is good, God is Love.  – I love you Kevin, Mom
 

Chapter 19: Body Language

As time passed, we became much better at reading Kevin’s body language.  Kevin couldn’t speak so we needed to use every means possible to allow him to communicate, particularly to let us know when he was in distress.  We observed everything we could, temperature, blood oxygen level, blood pressure, coughing, and physical posturing, extending his arms and legs in distress.  They usually moved in unison and a good day was one when all his vitals were stable and his body appeared at rest.  We constantly looked for ways to communicate and other things we could measure, focusing on the correlation of measures to gain clues into Kevin’s condition.
 
Wednesday, February 10, 2010 7:46 AM
Hi Kev – It's Dad,
You are lying in bed next to me as I write you this note.  You had a great night!! No coughing, no early morning temperature. Your blood pressure is perfect, good pulse rate and you are resting peacefully.  I imagine it would be hard to heal when you are in pain or uncomfortable and now you are more stable and peaceful.  We are seeing the same positive signs for a while now.  You move your fingers on both hands.   We know if we stretch you too far, you pull away.  Your body language lets us know when you are uncomfortable.  Your eyes are a little less dilated.  Periodically you peek out at the world by opening your eyes from time to time.
 
Kev, we've gotten several e-mails on the functional MRI study that's been in the media.  We have asked that you be enrolled in the study.  They hook you up to a special MRI machine and ask you questions while they are taking the MRI.  Out of 30 or so patients tested in your condition they found out that 4 could respond to questions through the MRI the same as a fully conscious person even though they can't respond externally.  One could even answer yes/no questions consistently.  What would we ask? There are so many questions we have. – We love you Kevin, Dad
 
Years later Kevin would be enrolled in a similar fMRI study, yes he was one of the patients miss diagnosed, a story for another chapter.
 
They say life is all about enjoying the little things.  How true! Joan reflects on the feelings associated with the first time she held her new born son, and then later her re-born son.
 
Sunday, February 14, 2010 11:16 AM
Hi Kevin – It’s Mom
It’s Sunday morning.  Today is Valentine’s Day.  It’s so good to have you home.  You have been home overnight a lot lately!  We had you home during the week because of the snowstorm.  Tuesday night was wonderful and then Wednesday night we lost electricity from 10 at night until 7 in the morning. Daddy and I have proven to ourselves that we can keep you safe.  It’s not easy but it is definitely doable!   Thank goodness for Daddy.  He lives, eats and breathes the next thing we need to do for you.  We have to figure out how we can do this on a regular basis without being exhausted.  haha.  
 
We watched the "Time Travelers Wife".  It was pretty good.  Daddy always used to say we never just hang out and watched TV.  Well, we are doing it now. And enjoying it!   A strange thing happened.  Daddy used the hoyer to lift you down onto my lap during the movie.  It was wonderful having all of you in my arms.  I had the strangest deja vu feeling overwhelm me. After the movie, I read through some of my journals I wrote to you when you were little and this is what I found:
 
"Kevin, I don't think I've told you this yet.  It’s an experience I had back when we first brought you home from the hospital.  I was disappointed that I wasn't able to be awake during your birth.  All during my pregnancy, I dreamed of the moment they would pull you out and place you on my stomach and our eyes would meet.  I was denied that moment because I had to have a C-section with general anesthesia.  Well, weeks after you were born I laid down in the living room.  The lights were dim and soft music was playing.  Your Dad was holding you and he leaned over to give you to me to hold.  At that instant, I felt as if God was giving me the opportunity to experience those feelings I felt I missed out on.  I don't know how to explain it but it was just a peaceful feeling, an exhilarating feeling as you were being given to me, the same as if you were being given to me right after being born.  I felt happy to have tapped into those fleeting moments.  The reason I wanted to tell you about this experience is because it was so special to me and I'm sure during your life you'll have to deal with lots of disappointments.  Remember though, that God has a reason and some good will come out of it.  Seize moments such as the ones I mentioned and make them special.  Otherwise, angry feelings will only make you miserable.  Trust in God and in His judgments."  
 
So again, for a fleeting moment, I was able to tap into a special memory and special feelings of you being given to me and holding you in my arms. I am disappointed and sad that you are not conscious.  But last night, I was given the opportunity to experience those wonderful feelings I have been missing out on.   I trust that God has a reason and that good will come of all this.  When you wake up Kevin, seize these moments we are creating for you while you sleep.  Trust in God and you will never be disappointed.  – Love you honey, Mom  

Just when we thought we had the routine down some new challenge would present itself.  Each challenge led to a new solution.  As of this writing we have two backup generators, one that runs on gasoline and one that’s tied into our natural gas lines.  Losing power is always a big concern.
 
Monday, February 15, 2010 7:31 PM
Hi Kev – It’s Dad,
We had a roller coaster of a week.  We brought you home and Tuesday and everything was fine for a while.  Wednesday might have been the worst night I can remember.  We had over a foot of snow.  Then at about 10pm our power went out from downed tree branches.   Your airbed and your feeding pump require electricity to function – what to do?   Then it started to get really cold since the heat went out.   I couldn’t take you back to JFK since we were snowed in.  Mom and I felt helpless.  We took you into the living room and we all just cuddled on the floor with lots of blankets to keep you warm. 
 
Our heroes (Anthony and his son from next store) came to the rescue and plowed the driveway just in case.   Luckily the power came on the next morning at about 9am.  Oh, what a night.  You were a trooper. – We love you Kev, Dad 
 
We were so close to bringing Kevin home, but something was not right.  There were issues with Kevin’s shunt and fluids were building up in his brain.  How could we have known? What did I miss?  In retrospect, it turned out to be a blessing that these issues came to a head (no pun intended) prior to us bringing Kevin home, but it was hard to recognize this “good fortune” at the time.
 
Saturday, February 20, 2010 2:21 PM
Hi Kev – It's Dad,
Just a quick entry since I am running up to see you.  We weren't able to bring you home this weekend.  You spiked a fever on Friday morning and your white blood count shot up.  We had to take you over to JFK hospital to run some tests, not to worry.  The white cell count was back to normal and all the tests are coming back good so far. Of course mom and I are saying, "OK everything looks fine let's get out of here", but that's not how it works.  We'll have to wait for the results of one or two more tests before we can get on the road. 
 
Oh well, since there was no place for me to sleep last night I jumped in bed with you and watched the Olympics.  You didn't seem to mind the company since you got a lot more sleep than I did. See you later buddy – Dad
 
Wednesday, February 24, 2010 9:32 AM
Hi Kevin – It’s Mom
The past couple of days have been rough.   For the past several months, you have always been making good progress, small steps but always forward.  Last Friday morning you spiked a 106 fever.  They got your temp down pretty quickly but no one could figure out why it went up so high?  They took blood, urine, and a CAT scan.  Your white blood count was very high and the ventricles in your head were enlarged, which meant the fluids in your brain were not draining properly through your shunt.  So.... they called 911 and the ambulance came.  I was a wreck.    The nurses were comforting and consoling us that you were going to be all right.  
 
Monday, you had a chest X-Ray because they needed better pictures to determine if there was an infection.  They put you on some pretty potent antibiotics after they got the results.  Then they took you for a shunt study.  They inserted a radioactive fluid into your head where the shunt is and took continual pictures of the fluid as it made its way down the shunt.  It is supposed to flow down into your stomach and then disperse.  Well, it stopped in your chest.  So they need to do a shunt repair.   
 
You still can't keep your fever down and yesterday you were very congested and coughed out huge amounts of phlegm through your trache.  You were very uncomfortable for several hours.  Overnight your IV had leaked and they needed to take it out and reinsert it.  You have the worst veins for needles.  They tried 5 times and finally found one that worked.  Then, after they started the antibiotics, that one would not flush so it was decided that you needed to have a PICC IV line inserted.  Well... last time you had one put in was at Jersey Shore and they took you down to x-ray to have it done.  Here, they can do right in the room and I was allowed to stay with you.  It took about 20 minutes.  Everything had to be sanitized and done just right.  You flinched several times because you were being pinched and prodded a great deal.  How sad it is that I got excited when you reacted to those pinches.  I don't want you to feel pain but it was very nice to see you react to the outside world.  You were a trooper.   If I weren’t so nervous about everything they were doing to you, I would have enjoyed the wonder of all this technology.  But no, I sat in tears behind my mask in the corner.
 
After that, they came in to take a chest x-ray to make sure the PICC wasn't too close to your heart.  The results came back fairly quickly and then they were able to restart your antibiotics.     Oh, and they are also going to change your trache so that we can just remove a cap instead of having to remove your inner cannula (the tube inside your trache) all the time.  There is less chance for infection with the new model.  The surgery to repair your shunt was supposed to be today but is now scheduled for tomorrow. 
 
A lot is going on.  It was a blessing that we discovered this problem.  Hopefully, once your shunt is fixed and your fluid can drain properly, then your recovery will continue.   So yes, the last couple of days have been rough.  But we have to just keep reminding ourselves not to worry and to leave it all in God's hands.     In God's hands and in God's time.  Remember that.  I'm trying. – I love you lots, Mom
 

Chapter 20: The Plan

I was really struggling to balance my need to do something to help my son, and this whole “let go and let God” concept.  I knew God was in control, but “God helps those who help themselves”, right?  This next entry deals with the struggle at a time when Kevin was most vulnerable.  In the end I created a plan, not expecting it all to come to fruition, but just because I thought we needed to have one.  While it took several years, Kevin actually followed the plan to a “T”.

Thursday, February 25, 2010 10:31 AM
Hi Kev – It’s Dad,
It’s 5am on the day of your operation and I can’t sleep.  Mom is usually the one that can’t sleep.  I usually go out like a light. She is with you at JFK Hospital right now so I guess tonight it’s my job to worry.  
 
Mom gave a pretty vivid description of your condition so now I’m going to give you “the guys” pep talk to get you ready for surgery.  First, I’m going to ask everyone to pray for you (your procedure is set to start at about 3pm today).  I will ask them to pray that your surgery is a success, but also that you have a complete and total recovery someday soon.  I wake up every morning thinking maybe today.  We know that God can “wake you up” in heartbeat if he chooses.  Of course it has to be God’s will, but we can be the persistent children that we are and continue to “ask – so that we might receive.”
 
We know “God helps those who help themselves” so we have to do our part.  You were always a hard worker.  I remember the day you were selected to the National Honor Society as a junior at CBA – I was so proud.  I remember when you asked me what you needed to do to get into Villanova.  We put together a plan and you did it all, SAT scores, grades, community service, as well as participating in extra-curricular activities.   It’s not just what you did, but how you did it.  When I met many of your friends from college this summer they shared with me that they didn’t know how they would make it without you.  You were their “go to guy” when they had academic and personal problems.  You made time to teach city kids math and science, be a Eucharistic Minister, and help with Special Olympics.  Sorry Kev – I know you don’t like to draw attention to yourself, but I have to tell you how proud I am of the person you have become and I know you are up to challenge, even one as tough as this.
 
OK – so here’s the plan.  First you need to get through surgery today and get your shunt fixed so the pressure in your brain can go down.   Then you can get control over fevers again.   We will continue to adjust your trache so that you can manage secretions better.  Some days we spend the whole day clearing your lungs, but that will change.  I think if we can get rid of the trache at some point you will be able to swallow food.  Won’t that be nice?  Next, we have to work on those eyes.  Since your intracranial pressure is on the rise you don’t peek out as much.  You’re going to change that too.   Finally, we need to find some way for you to communicate with us, either a thumbs up, the blink of an eye, or form a word with your mouth.  I think once you break through into some level and communicate we’ll be able to make good progress.   Well Kev – this is going to be a lot harder than any challenge you've faced so far, but you’re a fighter.   I’m sure we have no concept of how hard you have worked just to get to this point.  
 
I know that all of this can only happen if it’s part of God’s plan, but God does expect us to “help ourselves”.  That’s why we always said the same prayer every night when you were a kid. 
 
We pray that Kevin finds God’s will in his life,
That he listens and learns from parents, teachers and coaches
(And now doctors, nurses and therapists),
And that he is true to God and true to himself.”
 
I love you, Dad 
 
Thursday, February 25, 2010 5:50 PM
Kevin – It’s Dad
You did it!!  The surgeon just came out and said the procedure went well.  He went in through your stomach and clipped the end of the shunt that connects the draining device in your brain to your stomach. 
 
I quote "the fluids flowed happily".  These fluids were getting backed up in your brain and causing swelling.  That can't be good.  There's a chance the added pressure was inhibiting your progress.  Now we'll do a CAT scan in a week or so to see if the ventricles in your brain start to shrink in size.
 
Kev - people have been praying for you all afternoon.  I'm sure you want to thank them all, so I will thank them for you.  Keep up the good work – Dad
 
Kevin dodged another bullet.  Now we turned our attention once again to bringing Kevin home, this time for good.
 
Tuesday, March 2, 2010 9:46 PM
Hi Kev – It's Dad,
You are back at the Oak Tree Rehab Center.  After your operation they found an infection in your blood so you had to stay in the hospital for the weekend.  By Monday Mom and I had made up our minds that you were ready to leave the hospital since someone in your condition is bound to pick up something sooner or later in a hospital setting.   After a lot of negotiation we were able to get your discharge approved and Grandma and I drove you back to Hartwyck at about 4pm on Monday.  You got quite a welcome back reception from everyone on your floor, especially your roommate Troy.  He was all smiles and really missed you.
 
Today was a good day.  Your temp was below 100 all day and you looked comfortable.  You yawned a lot.  Your mouth opens wide and sometimes you raise your arms up into a full stretch.  I get chills thinking that after one of these yawns you will open those beautiful eyes of yours just like waking up in the morning.   What will you say? 
 
We are starting to build the team of doctors we will need for your return home.  It's no small task.   You will need a respiratory doctor, a gastroenterologist, a neurologist, a physiatrist and of course a general practitioner that will be flexible and responsive.    Then we need to line up physical therapy, occupational therapy and speech therapy.  We'll probably drive you somewhere for these since equipment is involved.   I am starting to interview home nursing agencies to find the angels that will come and take care of you at home.   I am not naive since we went through a similar process with Grandpa when he was ill.   There will be starts and stops, but I’m sure God will send us professionals that will take care of you with love and affection.
 
I have another small world story.  As it turns out your new respiratory doctor at JFK is from Middletown.  Mom taught his daughter religion classes at St Leos.   She loved Mom (no surprise) and the doctor gave us his cell phone number and said he was willing to make house calls if required.  Wow!! Have a good night Kev – Love, Dad
 
Saturday, March 6, 2010 4:37 PM
Kevin – It’s Mom
There have been many gestures of love shown to you and to us since your accident.  Scripture says that, through love, faith makes its power felt.  All this love and faith being expressed have kept us going, giving us strength when the tank was empty.  People keep saying that they think we are amazing.   We think it’s our community of family and friends who are amazing.  They have opened their hearts and embraced your journey and your life.  Through them, God has poured into our hearts the graces needed to carry our cross.  We are eternally grateful.  
 
While you are sleeping, you have met many people and you have touched many lives.   I have come to look at life differently and adjusted my expectations.  Daddy and I had many dreams for your life.  Some were things that society taught us to want for our children, but at the end of the day or at the end of life, we look back and ask, "How did I do"?    Well, I think about your life now.  You have done more good in the past seven months than some people do in an entire life.   You are God's humble servant.  Thank you for that Kevin.  Thank you for your sacrifice.  Thank you from all of us.  I honestly believe that if God asked you if you would do this for Him, you would have done so willingly.  I imagine you would have said "Yes Lord, Yes Lord, Yes, Yes, Lord ".  And now we willingly say, "Yes Lord" to Him, for you. – We love you Kevin, Mommy
 
Tuesday, March 9, 2010 8:11 PM
Hi Kev – It's Dad,
"There's no place like home, there's no place like home ... tap your heals Kev cause it looks like that's where you'll be going this Saturday.  We selected a home nursing service yesterday and they are scheduled to begin on Saturday.  There will be a nurse from 7am-11pm every day dedicated to your care at home.  Therapists will also be coming to the house to set up a home therapy program.  You have been doing so well at home on weekends that we feel this is the best place for you to continue the journey.  It's always bitter sweet and we will miss all of the wonderful new friends we made while at JFK.
 
This week is just packed with transition activities.  Yesterday we met with the new home nursing agency for several hours setting up the program.  Tomorrow we will get a new feeding tube implanted.  Thursday we go for a CAT scan to see how the shunt repair is coming along.  We may also get you a new trache this week that is smaller and easier to maintain.  We are counting down the days to finishing your antibiotic.  Once that's done we can get rid of the IV. 

That's about it for now.  We pray that you have a good week and that we have a smooth start to the next phase of your journey. – I love you Kev, Dad