May 9, 2001 - Day Eleven...

Nick passed on... eleven days ago.  This page will be to his memory, the legacy he leaves.  He was such a very special person.  He was   loved so dearly by so many.  Sitting here tonight, I do not know what form this page will take... where it will go...  just as I did not know what form this site would take or where it would go when I started this back in September of 1999.

We Begin Here...

On Thursday evening there was a Rosary and visitation.  Many of Nick's family and friends turned out and shared rememberances of Nick.  I was most touched by Nick's friends who shared powerful and funny stories.  Their love and admiration of Nick was very evident.  They talked glowingly of his strength and courage and how with all he had been through, and was going through, he lived his life to its fullest... with never a complaint.  Nick is a hero that will always be with them in their lives.  Four of his friends got tatoos that say "Mr. Nick".

On Friday was Nick's funeral mass and burial.  The mass began at 1:00 pm and was followed by a celebration of Nick's life in the adjacent church hall.  Karen's friend Rick put together a fantastic video of still photos,  videotapes of Nick, family and friends and music that was special to Nick and to us. It was a fantastic video that really captured the fun Nick had in life and what a quality person he is.  Rick put the video together in 4 short days and spent very long hours to get it done.  Thank you Rick.  It is priceless.... We will cherish it always. Many many people contributed so much to help make Nick's send off special.  Everything that everyone has done has touched us deeply.  Our community really came together for Nick and showed what a powerful impact Nick had in life.  He is so special.

Today, on this early summer day, I drove down to San Juan Capistrano to visit someone someone I hadn't visited for 18 years.

Back in the late summer of 1983, very shortly after Nick was first diagnosed with Luekemia, I took the day off of work to go with Karen and Nick to the Doctor.  Doctor visits were still new to us and scarey because we had just begun the regimen of chemotherapy and didn't know exactly what to expect.  After the Doctor visit we just decided to drive south along the ocean and enjoy the late summer day.  We stopped along the beach for a bit and Nick played in the sand at the edge of the surf and discovered seashells.  The picture on the front of the funeral mass program and the thank you cards, was taken on this day.  After a bit we got back in the car and continued our aimless drive south.  Along the way a beautiful perfect raindow appeared off to our left.  Karen says this confirmed to her we were going the right way.

Before long we found ourselves in San Juan Capistrano and decided to visit the mission.  Our feet took us to the chapel of Junipero Serra and we reverently walked to the front of the chapel to admire the highly detailed golden ornamentation behind the altar.  We knelt for a few moments and prayed for our son and headed back down the aisle to leave.  As we reached the back of the chapel, a flickering golden light coming through a tiny crude doorway to the right caught our attention.  We walked over to the small doorway and bent down to enter a tiny anteroom lit only by the flicker of hundreds of votive candles.  The heat from the candles warmed the room.  As our eyes adjusted to the dark we noticed hundreds of pictures of little children pasted all over the walls... beautiful little bald children.  And in the front of the anteroom a statue of a saint identified as Sanctus Peregrinus... Saint Peregrine... the patron saint of cancer patients.  We knelt down and prayed and we cried and we hugged our little boy.   Our aimless wandering this late summer day had not been aimless at all.  We were meant to find this place on this day.

When we were making preparations for Nick's funeral, we were at the mortuary selecting caskets and all of that.  When it came to selecting a prayer card we were having trouble deciding and Kirsten suddenly said, "No, you guys!  I know Nick has a prayer card on his bulletin board in his room at home.  I don't know who the Saint is but that is the one we should use.  I am pretty sure it is still there."  We all immediately agreed.  When we got home Kirsten ran back to Nick's room and came back with the card.  The prayer card on Nick's wall was of Saint Peregrine.  It had to be of course.    We all gathered around the card and read the prayer to Saint Peregrine on the back.  At the bottom of the card it noted Saint Preregrine's feast day...  May 4th...  the day of Nick's funeral.

So today, Memorial Day 2001, on this early summer day, I drove down to San Juan Capistrano to visit someone someone I hadn't visited for 18 years.  My feet took me to the chapel of Junipero Serra and off to the right a flickering golden light coming through a tiny crude doorway caught my attention.  I walked over to the small doorway and bent down to enter a tiny anteroom lit only by the flicker of hundreds of votive candles.  The heat from the candles warmed the room.  As my eyes adjusted to the dark I was dissappointed to see there were no pictures of bald children pasted on the walls.  The walls were clean except... for one tiny picture of one beautiful bald headed child... on the wall to the right... so tiny I could have easily missed it.  I knelt down and I prayed and I cried ...and I begged God to be kinder to this this little child and his family.

One of my brother’s favorite things to do was shoot pool. He and his buddies would go out to pool halls all the time, and he even had his own beautiful pool cue that he cherished. My grandparents have a beach house in Oceanside, and we’d go down there all the time for the weekend, and in the rec room were 3 pool tables.

One foggy day we spent the entirety of the day there since it was too cold for the beach.  We played in teams with our cousins.  I really enjoyed playing and spending time with them, but I was just horrible.  I would shoot and miss the cue ball all together. Finally Nick realized my frustration, and offered to be on my team.

He’d line up the shot for me, and say something like  "Ok sister, hit to the lower left of the cue ball.  "I didn’t trust him at first, because it didn’t seem to make any sense.  But suddenly everything just came together.  I was getting every shot in, even a couple of combos.  Nick and I won that game.

In later games when I would play against him he would still direct me in what to do, and I was still doing great even though all the shots were against him.  I doubt any of my friends would actually believe this story, because they’ve seen me play and can tell you that  I’m far from good, and I usually help greatly in my team losing.

But it seems all I need is for Nick to point me where to go and help me through everything.

Good afternoon... it is overwhelming to see everyone here today and we want to thank you so much for being here to honor Nick.  It is an incredibly rich affirmation of what a courageous, strong, loving, caring and fun loving guy Nick is.

I could go on for hours with Nick stories that speak to his courage and strength and wonderful humanness,  but Father appropriately recommended that we keep it short. So  there is one story that is very special to me. The event occurred 15 years ago and I first wrote about it on Nick’ website a year and a half ago while Nick was undergoing his bone marrow transplant.  Many of you have read it but I wanted to share it with everyone here today.   It’s called... If he can swim enough.

If he can swim enough……

When Nick was about 5 years old, and undergoing chemotherapy, he swam in a Leukemia Society of America, Swim-a -thon. He solicited family and friends to sponsor him. We figured he would swim 1 or 2 laps in the regulation size pool... he was pretty weak from the chemo. We all sponsored him thinking 1 or 2, maybe 3 or 4 laps…… but he won't go anymore than that.

We arrived at the pool at 8:00 am on a warm Saturday morning and Nick wasted no time in jumping in the pool... Nick always jumped right in to everything he did.   Remember here…… Nick is 5 years old…… and swimming is dog paddling…… and not real efficient dog paddling at that. So, he enthusiastically, and with great determination, begins his dog paddling quest, 25 meters down to the other end of the pool...

paddle...paddle...pause...paddle...pause...paddle...

At the far side, he hugs the edge of the pool, wipes the water from his eyes , and taking a deep gulp of air, turns to glow at the adults at the other end of the pool with the tears in their eyes that he was too far away to see.

A brief moment to rest and savor the conquest, and the return trip begins...

paddle...paddle...pause...paddle...pause...paddle...

"Mark Nicholas down for 2 laps! …… way to go, bud!…… good job!"

Mom leans down and gives him a hug.... and a towel. A quick wipe of the face…… the towel is thrown to the deck…… he's off to conquer lap 3.

Four……,,,……,,, Five……,,,……,,, Six laps ……,,,……,,,
Ok……. So we were wrong…… he must be feeling really good today.

Seven……,,,……,,, Eight……,,,……,,,Nineteen……,,,……,,,Twenty! "All right Nick! You made 20! Great job! Let's dry off now."

What time is it dad? How about just a few more?
Thirty…….,,,……,,,……,,,……,,,……,,,…… Forty……,,,……,,,……,,,……,,, Fifty !!!!!

I want to keep going !
Pleading…… begging…… the parents were……

10:00 am >>>>>>>>>>>>>> 11:00 am >>>>>>>>>>>
no longer dog paddling…… pulling his exhausted body down the length of the lane rope……
up and back…… up and back…… up and back…… he has such a powerful mind

enthusiastic..., determined..., challenging the depths of his fragile endurance.

12:00 noon……
finally... thankfully... the parents were...

"The event is over. You have to come out now Nick."
Ok dad!

Nick swam 150 laps that Saturday morning... in the summer of his 5th year. To this day, I firmly believe…… that Nick's 5 year old mind firmly believed…… that if he could just keep swimming, he could personally, make it so that no other child would ever have to go through what he was going through…… they would find a cure for Leukemia.

If he could swim enough…… they would find a cure ……
And I'm not betting against him

Ever

Nick, your strength, your courage, your humor, your zest for life is and will always be an inspiration to your family, your friends and to all who knew you.

Nick,  you are forever my hero.
 
 

I have one more thing I would really like to say...

Nick was first diagnosed with leukemia 17 years and 8 months ago.  Karen was 3 months pregnant with Kirsten and Natalie was a few years off yet.  Nick referred to them collectively as “Sisters” and individually as Sister and Sister.  Nick’s battle with  his disease spanned  their entire lives.  Unfortunately but unavoidably, their needs often came second to Nick’s needs.

Over those 17 years, they spent months without a mother during Karen’s shifts at the hospital and months without a father during my shifts.   While this could have caused jealousy or self pity or acting out,  the girls responded with tremendous love, respect and admiration for Brother and they themselves developed tremendous strength, courage, self assurance and independence.

This month of April they spent the entire time without either parent, having only each other to care for each other and support each other through the last month of Nick’s life.  They have made tremendous sacrifices in their lives.  They have done it with courage and grace...they made it look easy but I know it has been very hard.

Karen and I want you all to know we have 2 very special daughters.  And we love them so very much.

If you have your children with you here today, beside you or sitting somewhere apart, find your child and give them a big hug right now.  I am going to give my daughters a big hug.  Thank you all so very much.
 

If I were to dwell on the infinite possible experiences that Nick dreamed of having in his life, that will never happen, I could not stand here.

If I were to focus on never being able to talk and laugh with him, or to touch him or smell him, I would just want to die too. I can handle Nick’s passing because am filled with Love, Acceptance and Gratitude.

I love him so much and he knew it. He delighted me. At the time in his life he should have been moving away into an independence, he had to spend hours with his parents, and he was always the one who inspired us to be strong.

He taught me so much, by example, and in his quick funny, diplomatic way he could set me straight on many subjects.

I am grateful that we accepted his illness, and made the best of every good moment, and that few were wasted on negative thoughts, always hoping for a good outcome.

I am grateful to the loving medical people who cared for Nick, and the knowledge they had that let us keep him these 20 years.

I am so grateful to a stranger in Ohio, Mr. William Hurtle, who went through the pain of donating his bone marrow to a young man in California he would never meet.

I am grateful to have such a warm, loving family and friends that have always been there for us, especially my mom and dad.

His sisters are amazing young ladies, having to take care of each other and never resented the attention that we gave their brother. I hope now I can better help them fulfill their dreams.

I am grateful to all of our friends who have pulled together to show Nick how much we love him and give him this beautiful goodbye.

I am grateful to God for giving me this beautiful boy and allowing him to become a man.  In the end, I am grateful that God released him from this body that had to work so hard for every last breath.

By Nick’s passing to heaven, all of us are reminded of how wonderful life is, and how we need to never take our friends and families and all the joy in this world for granted.

As Kirsten and Natalie were trying to accept the inevitability of his death, Kirsten told me this...  " Natalie and I feel sad for Nick, but we know he is in a better place, we feel sad for us, because we will miss him so much,  but we feel saddest for the people who will never meet him, because they will never know a really great guy."

To try to share Nick's life with you, his family and friends have planned a very special tribute to him in the hall following mass that we hope will show a few of the many facets of his life. We invite all of you to stay for it.

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