It is so hard to believe that Marky would have been four years old today!  It just doesn't seem as if that much time has passed since that Mother's Day morning in 2004.  I try to imagine what we would be doing with him and what activities he'd be involved in.... his cousin Kate was born two months before him so when we see her we get a glimpse of where he would be if he were here.

 

Mary Cate has finally learned about the cemetary.  When we visited Hawaii in January our first room had a view of a little Hawaiian cemetary and I just knew the question was coming.  Fortuneately, Mark was there to answer because he did an amazing job of answering her questions and explaining all about it.  I knew that she thought Marky was in heaven body and soul and we were waiting for the right time to talk to her about it.  Hawaii actually was the perfect time because we were all together with plenty of time to talk and listen without having the distractions and the day to day rush of being home.  She brought it up many times during our trip and still does today when something pops into her head.  I think we're going to take her to the cemetary for the first time this weekend.

 

I wish I could say that things were better on the organ donation front four years later.  The waiting list continues to grow, as of today it's 99,254 men, women and CHILDREN waiting for a gift of life.  Four years ago that number was in the 80,000's if I remember correctly.  When Marky died, 17 people died every day waiting, that number is now quoted at 19 people per day.  There have been some positive changes proposed for how organs are allocated to young children.  These changes were actually proposed by one of Marky's doctors and we were thrilled to see them.  It should make the system work better for the sickest children.

 

Mark continues to be the President of the Second Chance Foundation.  We have both spoken at an UNOS regional meeting.  I'm speaking this weekend at a women's breakfast about my little guy and his message about the gift of life.  I know it's the right thing to do but it's days like today that I especially wish things had been different four years ago.... I wish, oh how I wish I would have delivered a healthy little boy.  He was such a sweet soul and so happy.  He brought so much joy into our lives. We love him so much and miss him so much.

 

Happy 4th Birthday Marky!

 

 

Marky died 3 years ago today.  I must say that this anniversary of his death was much more difficult than I had anticipated.  I'm trying to figure out why.... and the only thing I can think of is that to get to the point where I am able to live a new normal I just don't focus on his death as much during the year.  Marky kind of "lives" in our family as a part of the family that we just don't ever physically see except for his photos.  So focusing on his death really reminds me that he's gone and it brings back all of the pain.

 

Gracie even knows who her brother is and says baby Marky when she sees his picture.  Out of the blue she'll say baby Marky and it makes me feel like she can see him or something, then I realize that we just walked by his photo.  Mary Cate talks about her brother all the time and I'm really happy about that.  I remember speaking with someone who said that their mother had a child who died before they were born and it broke my heart because they referred to the child not as their brother or sister but as their mother's child.  I want the kids to know their brother and for him to continue to be a part of our family. 

 

Mark and I spoke last week at a United Nework of Organ Sharing (UNOS) Region 5 meeting to mostly people that work for organ procurement organizations (OPO's).  UNOS is "the list" and OPO's are the organizations that are responsible for asking families to donate their loved one's organs.  We sat through about 30 minutes of their meeting and then we gave our talk.  What was really depressing and great at the same time.  It was one of their charts on the powerpoint that showed organ doantions by month for the past four years.  What was depressing was that organ donations are at the lowest each December which was when Marky needed his transplant.... what was really exciting was that organ donation has increased each year in the past four years.  What was even more exciting was to see the work the group is doing and the focused effort they have on increasing donation.  It was a very difficult talk to give.  These people have probably heard and lived many, many transplant stories and I really wanted our talk to be meaningful.  It was especially hard for me to get through it and I think that I just need to realized that December is a hard month for me.  If they heard anything that day, I hope they heard me say that "I wasn't praying for another child to die so that my child could receive an organ, I was praying that another parent would say yes when faced with the decision."  I don't know why I think that statement is important but it took me a while to make peace with my prayers when Marky was alive and that's finally where I ended up.

 

Marky, I miss you, I love you and I wish I could chase you around the house!

 

 

10/18/07 Thursday

It was strange today, I did a lot of thinking about Marky and how things would be if he were here with us.  I sang to him and told his little sister about him.  I'm thinking about him a lot lately.  I think it's because it's mid-October which is the time I call the "beginning of the end".  It was in October of 2004 that Marky became very sick and was hospitalized in Las Vegas and then airlifted to UCLA.  We had no idea what was ahead of us and we had no thought of him dying.

 

I hadn't noticed that posting from July when someone asked why Marky's grave had not been marked with a headstone.  Well, it's because deciding what we wanted and what we should say and all the details of the headstone were very overwhelming to me.  It was almost like the last thing I'd ever do for my son and I wanted it to be perfect.  I didn't want it to be ordinary, I wanted it to be artistic and beautiful.  I know the headstone means nothing to him, but it was VERY important to me and I wanted it to be perfect.  We actually found a company in TN to design it as my first attempt to have it done at Palm was a disaster.  Unfortunately, it's still not perfect as it has two typos..... I couldn't believe it, typos on a headstone.  We're working to have them corrected and hopefully they will be soon.  So, that's the story of why it took so long to get the headstone.

 

 

Happy Birthday Marky!  He would have been three today..... wow it's hard to believe that he'd be walking, talking, taking swimming lessons, getting ready to go to preschool in the fall.  I miss my little man so much.

 

We looked at videos of Marky for the first time over the weekend.  It was good to see him and hard to see him at the same time.  Looking back at them it's easy to see that he was very sick and there were days when he just didn't look good but he also had days when he looked just like any other little boy.  Mary Cate actually asked where his tubes where in part of the videos.  Of course we don't have nearly as many videos as we thought we had or we'd like to have.  We NEVER thought that our little boy would die, really we didn't, not until that very last day in December did we face the reality that he wasn't going to get the precious organs that he needed.

 

This year we told Mary Cate that it's Marky's birthday.  We're having a cake for him which she has decorated like she did on his monthly birthdays we had for him and we're sending him balloons.  She asked me what his favorite thing was and I told her binkies so she's going to draw a cake on one balloon and a binkie on the other.  She's amazing.... she often tells me that "Mary the Mother of God" is taking care of Marky in heaven.  I sure hope she's right.

 

I wish I could say that things have improved on the organ donation front over the past three years.  It's frustrating that the shortage of organs is only getting bigger.  I pray that things will change.  I wish I could find a way to make a big difference to honor Marky.

 

We're continuing to work with the Second Chance Foundation, (Mark Sr. is the president of the organization), to help transplant patients.  We're having the 3rd annual Baby Mark Jr. golf tournament to raise money for the cause.  I'm still raising money through the bracelet project and will soon be making a donation to the new pediatric intensive care at UCLA.  I continue with the web site in hopes of helping other families who have similar situations.  I do hear from people every few months so I feel that it's helping in some way.

 

I miss my baby boy so much that it hurts.  I just want to hold him again.

 

 

 

Tomorrow night we'll mark the 2nd anniversary of Marky's death.  I am really amazed that it's been two years....... I feel like we've lost a few years of our lives.  I am happy to say that we're finding a new normal for our family.  We had heard from other parents that the second year after their child's death was harder than the first.  I think I'd agree with that.  The first year you're in a fog and running on adrenalin.  The second year the reality of it hits you and the adrenalin is gone.  No one has told us what the third year brings, but I think that it will bring us to our new normal and we will start to focus on the happy times with Marky both at the hospital and at home.  We did have many happy times, he was a great baby and we loved and still love him very much.  Marky will be a part of our everyday family in a matter of fact way rather than in a sad way (if that makes sense).  We're not there yet, but I think we can be and I hope we can be.

 

My Christmas wish this year is that some family out there who, like we did two years ago, desperately needs an organ will get it.  I pray that the new year will bring better education and understanding about the need for organ donation and the never ending number of names on the list will begin to go down instead of up.

 

Watch the Rose Parade on January 1st and look for the Donate Life float.  We've dedicated roses on the float for Marky, Tina & Aiden Quigley and Aylcia Levy & her family.  I've always loved that parade!

 

 

Last night we had the second annual Second Chance Foundation Roast.  It was a great success thanks to all of the great committee members, staff, volunteers and attendees.  It's hard to believe that we're closing in on two years since Marky died.

 

Today Grace is 7 months old and she's doing great.  Marky only lived to 7 1/2 months so it really feels strange........ I know that God really does take care of us.  Marky's 7 1/2 months felt like they lasted much longer than the past 7 months of Gracie's life.... I am SO thankful for that.  Even though we only had him here for a short time it really felt like it was a VERY long time when I think back on it.

 

I think the fall will forever be different for me.  Marky went into the hospital for the last time in mid-October, we had Halloween, Thanksgiving, my birthday and almost made it to Christmas.  So it feels heavier to me this time of year, I'm not sure if that makes sense but that's how I'd describe it.  As much as we're getting to our new normal, we still have a long way to go.  I finally copied this journal to a file that I'll be able to read in the future.  I'm afraid to go back read it now, I haven't been able to since Marky died, but I know that some day I will be able to and I'll be glad that I have it.

 

We miss you Marky and we will love you forever and ever.

Much has happened over the past four months............. it seems that it's harder for me to share in my journal.  I don't know why, I always want to update but then I don't do it and now it's been four months.  Some have told us that the second year after the death of your child can be more difficult than the first.  I don't necessarily believe that but it is definitely different in the second year.

 

Marking the anniversary of Marky's death on December 22nd was not as hard as I had imagined it might be.  I re-live that day so often in my head that don't think I could re-live it any more vividly or completely and thankfully on the 22nd I didn't go through an hour by hour reenactment.  I find that holidays are the most difficult thing.  Christmas was very hard again this year...... I just imagined my little 19 month old toddling around the Christmas tree and all the fun he and his big sister would have had.  There is definitely someone missing from our celebrations, there is a hole in our family that can never be filled.

 

As the new year began I found it more difficult to get things done, return calls, emails and reach out to others.  This is what I've found is different about the second year....  It was almost as if Mark and I were running on fumes in the first year, getting everything done, being involved in our support group and organ donation awareness and then we both kind of hit the wall once we reached the first anniversary of Marky's death.  We are forcing ourselves to stay involved and know that these feeling will pass.  Our grief will never leave us......but it will always be changing.

 

On April 12th at 5:54 p.m. Marky became a big brother!  Grace Elizabeth joined our family and looks a lot like her big brother.  She was very small but very healthy and a gift from God.  Mary Cate is thrilled to have a little sister and was very happy that she came home from the hospital right away.  During my pregnancy she asked how long the baby would be in the hospital and how long she would be with us before she went to heaven.  Since Grace has come home, I haven't had any questions about how long she's staying so hopefully Mary Cate is feeling more secure that her sister is around for keeps.  I STAND CORRECTED!  Tonight at dinner Mary Cate said "remember that big black car that we took to church?"  I thought I knew what she was talking about but I said "I thought it was white".  She said, "no Mom, it was black, the one that we took to church when Baby Marky died and we're going to take the same one when Baby Sissy dies."  As time passes I'm sure she will become more secure that her sister isn't going anywhere........... I'll pray for that.

 

Grace's birth has made me miss Marky even more...... I'm sure he kissed her goodbye when she came to be with us here.  I know that during her first 7 1/2 months I will be making lots of comparisions to her big brother.  Oh how I wish he were here with us!

 

 

 

Time is going by very quickly and I'm not sure how it gets to be over a month since I update.  I'm always thinking of things to "say" but just don't make it to the website.

 

Last Sunday night was a special night for us.  We coordinated the Compassionate Friends Worldwide Candle Lighting here in Las Vegas.  It was a really nice event and we had a great turn out.  Compassionate Friends is the support group that Mark & I joined.  It helps parents of children who have died.  We had two news outlets there.  The Fox 5 coverage is on their website:

If you click on the red camera icon to the left of the story, you can see the whole news report.

 

I can't believe that next week it will be a year since Marky died.  Today on the way to school Mary Cate said she saw Marky and that he really wanted to come home to his Mommy.  Oh, I so wish that that were true!  We miss him so much and are really feeling his death this week.

 

 

I've realized that I don't really like Halloween anymore....... the goulishness of it really bothers me.  On Halloween I wanted to take a balloon to the cemetary but the only balloons I could find had skeletons or ghosts on them and they just didn't seem like the right think to take to the cemetary.  I then beat myself up because I didn't even go to the cemetary on Halloween.... then I realized that Marky doesn't care about Halloween.  The roller coaster ride continues and I think about Marky even more now than I did a few months ago.

 

Mary Cate has a new plan..... a few days ago she asked me to buy "air for balloons" her way to say hellium.  She had written Marky some notes and wanted to send them to him.  The next day she said she had decided to tape the note on the balloon instead of putting it inside because Marky wouldn't be able to open the knot on the balloon.  She was thrilled when I bought a tank yesterday and today we sent our first balloon aloft.  She took it outside and then said to the sky "Marky you are the best brother ever".  She watched it until it was gone and told me that Marky had grabbed the string and he was holding onto it.  So if you notice lots of balloons coming from our house you'll know that Mary Cate is very busy sending notes to heaven.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My life, as like many others, is one often compared to a roller coaster, a never-ending thrill ride full of various emotions and experiences, twisting and turning toward an unfathomable fate.  Most go by unnoticed, but, every once in a while, I come across such an intense, penetrating situation that I can't help but be affected by it.  One, above all others, remains poignant in my mind until this day.

 

I can still feel my heart beating at an unnatural pace as I walked into the ICU.  I couldn't believe how somber it seemed.  It was one of the most unnerving places I had ever been.  No one was moving quickly or talking loudly -- a world of mimes.  My hands shook as I spent the required three minutes washing and drying them, cleansing myself from dangerous bacteria.  The nurse dressed me in a hospital gown and placed a mask over my mouth.  I could feel the warmth of my breath on my face and the sweat collecting on my body.  The only lights I could see were those above the cage-like cribs in which the unfortunate babies lie, so small, so helpless.  It was hard to imagine that my own baby brother was among them.  He, who had only been born two days prior, had alrady been through so much pain and suffering.

 

As I approached my stepmother's familiar figure, I prepared myself for what I was about to behold.  At the time, I didn't really understand my reaction, nor expect it.  All I knew was that, at the sight of my innocent brother surrounded by intimidating machinery and physicians, I was overwhelmed with emotion.  His fragile body simply lay there, no movement whatsoever.  Blood stained bandages and rags lay beside him, where a teddy bear should have been.  He seemed more of a robot than a human.  The wonders of modern medicine.

 

At the realization of the precariousness of his life, my body involuntarily began slowly to shut down.  The room started spinning, the sounds faded.  I couldn't talk, think, or breathe.  As soon as possible, I staggered out of the ICU into the hallway, ripping off the gown and mask as I went.  Several people passed and stared at me, leaning on the wall by the elevators, but I didn't so much as glance at them.  My head was pounding, my chest was pounding, my body was pounding.  I slid down the wall and just sat there, for how long I don't know.

 

After a while, I was able to stand up and go downstairs where my father was waiting.  Knowing that it would only hurt him further, I kept my experience to myself.  Why was he forced to deal with this type of pain?  Wasn't his life already complicated enough?  Soon sadness was replaced by guilt.  As a digestive disease victim myself, I complained about sore throats and stomach aches.  I had always thought of Crohn's disease as a painful curse, but my situation was far less dire than my brother's.  He was waiting for a small intestine, liver, and kidney transplant - which, as I soon learned, was not a small order.

 

Every other week, I traveld to UCLA.  With each visit, I hoped that we would get a call that there were organs available.  Nine weeks he stayed on the top of the regional transplant list.  Nine weeks he patiently waited.  For hours, I would hold his hand and talk to him.  I spoke about everything and anything.  As long as he was listening, I was there.  When I would have to leave and go back to school, I prayed that the next time I saw him, he would have new organs.  On the last day of semester finals, those prayers were shattered.  During my sixth exam, I received a message to go to Student Services.  Tears treaming down my face, I listened as my counselor told me they were taking my brother off of life support.  I was to get to LA as soon as possible.

 

My family and I sat with him for hours -- the shortest and longest hours of my life.  I never ralized how contagious tears were until that night.  We took turns holding him and telling him not to be scared, that he was going to a better place.  I think we were reassuring ourselves more than him - telling him that he would not have to experience any more pain.  He would be in the arms of the Lord.

 

He passed away at 11:34 p.m., seven hours and seven minutes after I arrived.  As I look back at his short but eventful life, I am filled with a sense of pride.  I thank God every day that I am a member of such a strong and loving family.  For the longest time, I had underappreciated what was right in front of me - the courage of my parents, the support of my friends.  However hard it is to see the light, I know my family will stay strong.  Where life ended, hope began - a hope that others may never face the pain that we have.  My stepmother resolved that my brother's life was meant to be a crusade, a crusade for organ donation.  With the help of his web-site, local and national newscasts, and newpaper articles, he has spread the word on the importance of organ donation.  Thousands of people have responded to his story, raising hundreds of thousands of dollars for the cause.  I can only hope that someday, I can touch half the number of lives that my seven-month-old brother did.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This is Mark Sr. writing today.  Sara has graciously given me some space in her journal.  I have not had the strength (courage?) to write down my feelings either publicly or privately since Marky was born.  I now fear that unless I crystallize my thoughts some of what I have learned will be lost or forgotten in the busy rush of life that will no doubt return.

 

I guess a good journal should be more like stream of consciousness---just a pouring out of feelings. However I cannot shake the legal training which requires me to organize things as neatly as I can.  Perhaps its also a male thing---talking about one’s feelings is a major event when you are a man and is usually only done under the pain of paying $150 per hour to the listener.  I will be learning new things from Marky’s short life for a long time but I have already learned at least the following:

 

1.                 The importance of organ donation.  Of course much has been written about that both on Marky’s home page and elsewhere.  I believe that many people fail to designate themselves as organ donors through inertia or ignorance.  Speaking just for myself I for many years foolishly thought that the only way one could become an organ donor was to take some action when renewing one’s drivers license.  Every four years for a long time I would forget to designate and then say “Darn, I’ll have to remember in four years”.  For some reason, possibly as part of some divine plan, last year at license renewal time, (not too long before Marky was born), I remembered and designated myself as an organ donor.  Could that just be a coincidence?

 

Now I know a little more and there is no need to wait for a visit to DMV—any one at any time can fill out the form (available at http://www.nvdonor.org/pdf/DonorRegistration.pdf.pdf for Nevada residents and at  http://www.donatelife.net  for other states).

 

Of course one critical organ donation decision—whether to donate the organs of a deceased child—is much more complicated.  Prior to Marky’s death I had sort of a subliminal understanding that if he did not make it of course we would donate his organs—how could we refuse to do what we were asking others to do?  But upon his death I was surprised at how uneasy I then felt about the prospect of having his little body disturbed in such a way.  We did some soul searching and Sara and I ultimately decided we must offer his organs.  But the experience caused Sara to say something that only our tiny local newspaper picked up:  “Organ donation is not the easy thing to do but it is the right thing to do.”  Marky’s life and death enabled us to walk in two different pairs of shoes—those of parents whose child needs a transplant and those of parents of a deceased child whose organs might help others.  We learned a lot from those walks but I pray we do not get any new shoes for a while—our emotional closet is full.

 

2.                 Don’t let anything become more important than spending time with the family.   How easy it is for people, (especially husbands and fathers) to make family time the lowest priority.  I recently ran across this by Lee Iacocca:

 

"No matter what you've done for yourself or for humanity, if you can't look back on having given love and attention to your own family, what have you really accomplished?"

 

Marky made it easy for me to decide to spend time with him—we knew his time on this earth could be very short and I made it my priority to spend hours and hours at his bedside.  The harder challenge is to make lots of time for our three year old –she’s so healthy and vibrant—aren’t there still plenty of years for me to spend time with her?  Maybe yes, maybe no. Harder still will be spending time with our high school senior and college sophomore.  They don’t always have time for me.

 

No one on his or her deathbed ever said: “I should have spent more time at the office”.

 

3.                 Reach inside yourself and you will find your inner strength.     During the last seven months I have confirmed what I suspected since my wedding day:  Marky’s mommy is the strongest person I have ever met.  Sara endured Marky’s close encounters with death with a calm and courage that I would not have thought possible for anyone, let alone a mother.  Until Thanksgiving she was at UCLA without me and shouldered the good and bad news alone at least 5 days a week.  Just hearing the developments by phone sent my heart into my throat yet Sara was right there taking every blow in person and standing right back up again for the next one.  There is no doubt that her faith in God and the love and support from her MOMS Group and her friends and family gave her what she needed to remain steady.

 

My inner strength came very slowly.  For example, technology always seems to come with mixed blessings.  When I got a new cell phone over the summer it included a camera. I was able to take a cute picture of Marky and make it the wallpaper on the cell phone screen.  As his condition worsened I dreaded making or receiving calls because seeing the picture would quickly reduce me to tears.  Now, having seen Sara’s example and with God’s grace, whenever I am feeling weak or down I open the phone to gain courage by looking at one of the bravest people in the world—my son.

 

The old cliché is that God does not give you more of a burden than you can bear.  I think the old German folktale says it best:

 

 

There once was a woman who had so many problems, so many worries, so many troubles... that at times she felt she had more troubles than anyone else in the world.

One night she fell asleep while worrying about her troubles and had a dream.

She found herself in a vast candlelit cavern, surrounded by gray bundles of all shapes and sizes, as far as she could see. Walking toward her was a woman with flowing long white hair and dressed in a long dark cape.

"Who are you?" asked the dreamer "and what is this place?"

"This is the cave of the bundles of troubles and I am the Keeper of the cave."

"Bundles of troubles?"

"Yes," the Keeper explained, "each person who walks the earth carries a bundle of trouble on their left shoulder." The dreamer turned to look and there was a gray bundle on her left shoulder - it had been there all this time and she never noticed! "If you wish," the keeper continued, "you can take your bundle down and exchange it for another."

 

"Really? I can?" The woman lowered the bundle from her left shoulder. Oh it felt so good to put it down. Then she began picking up different bundles, feeling their weight, trying them on for size... She did this for hours until finally she said "Can I take this one? This one feels just right."

"Certainly you may" the Keeper told her, "but first, why don't you open it up and look inside."

So the woman put the bag down and pulled on the gray drawstrings and looked inside... "But these are the same troubles I brought in here!"

The Keeper of the cave smiled softly and nodded. "That's usually what happens, but do not despair, for there is another bundle on your right shou