our story





Mark Adam

December 11, 1982 - December 16, 1982

This is a journal of Mark's anniversary week in 1995 . . .

The music you hear is the theme song from Casper the Friendly Ghost Movie. You may think it's odd that I should choose such music. I first saw the movie shortly after Mark's 12th birthday. In the movie, when Casper becomes a real boy for a few hours, he is 12 years old, blond, freckled, cute and looking much like I would have pictured Mark at that time. Casper was a nice kid who cared about people, and I'd like to think that Mark would have been that way. Besides, it's a lovely piece of music. Enjoy!

December 11 | December 12 | December 13 | December 14 | December 15 | December 16 | December 17 | December 18

Mark would have been 13 on December 11. Why after all these years do I write about him? After all, he was only 5 1/2 days old when he died. Mark was my second child. My first, Andrew John, was stillborn 3 1/2 years before Mark was born; therefore, Mark was a long-awaited baby - loved long before he was conceived. He was big and beautiful, and he died because of a doctor's screw up. I still have anger about that - but I am not bitter. Mark gave me too many gifts in his short life for me to be bitter. It is these gifts that I would like to talk about - and will continue to do so during his anniversary week. Please check back each day as I share these gifts with you.

Written on his due date, December 2. (And I know if he'd been born on that day, he would have been fine!)

Monday morning, December 11, 1995

I awoke with start this morning. It was as if something shook me awake. I looked at the clock and it was 1:23 a.m. Mark was born at 1:24 a.m. As I looked at the clock, the time changed to 1:24. I went back to sleep and slept like a rock, waking up to beautiful (and much needed in these parts!) rain. It is still raining. It fits my mood but it's special rain, not depressing rain. And I'm looking for rainbows instead of dwelling on the rain.

On Mark's birthday, it's easy to think of the gifts he's given me rather than the pain. I know in the next few days as I move towards the anniversary of his death, I will feel the pain much deeper. Now, I feel joy in his being and sadness in his absence.

Mark gave me the joy of holding my child tightly in my arms, of cherishing his life and my parenthood for 5 1/2 precious, bittersweet days. I never got to hold my first son. Mark gave me strength and determination. He gave me the gift of anger which I had buried very deeply when my first son died. Mark let me know that it was okay to voice my anger (necessary for my own health and well-being). And most importantly, he taught me that in order to love others fully, I have to love myself first and take care of myself. Over the first year after his death, these lessons came slowly but I learned!

Over the last several years, many other precious gifts from Mark have appeared . . . and I will continue to discuss those over the next few days.

Monday evening, December 11
The rain continues to softly fall. We decorated our tree as we always do on Mark's birthday. It was gentle day in remembrance of a gentle babe. Mark gave me the gift of being a better mother, of loving fully and appreciatively my two living boys. What a tremendous gift from one so small. Mark, I miss you very much.

Tuesday evening, December 12
It has poured rain today with a vengence and the wind is wicked. Somehow the violence of the storm fits my mood. I like to focus on the positive aspects of my grief (yes, there are positive aspects), but today, I couldn't seem to do that. There were too many other things on my mind, too many irritants that I couldn't just let flow by. I hate days like this.

Today was the Christmas program at my sons' school. They are in first and third grades. It's always bittersweet for me and I always fight back tears as I'm so overwhelmed that I even have children to fuss and take pride in.

A lot of my frustration today stemmed from the loneliness of it all . . . Mark's father and I divorced a year after he died. I am remarried to a wonderful man who is very understanding and yet, I can't give and receive a hug from the only other person in this world who went through what I did with that special child. I don't even know if Mark's father remembers it's "that" time of year. I have very special friends who remember, but it's not quite the same.

Again, I awoke at 1:24 this morning. The storm was really brewing then and I was almost afraid to go back to sleep. I was surprised (and somewhat delighted) that I again woke up at this particular time. I've never experienced this before.

Ah, it's Christmas time which reminds us of presents and so I must think again of the gifts Mark has given me. Some of the most special ones are the people who have come into my life because of him. I never would have known these people otherwise and that would truly have been an enormous loss. These special friends have enriched my life in ways I never would have imagined. I could go on and on about that - and I think I shall tomorrow . . .

Wednesday evening, December 13
Today was the day we learned Mark was going to die, that all hope was gone and that we needed to decide to let him live out the rest of his life on machinery or to turn off the machines and let his body go. Such a choice! I didn't want to even think about it. We'd just given life to this child, and they were asking us to decide to take his life away. After the shock wore off, I realized that it wasn't "us" who had given him life in the first place. Secondly, Mark's brain was already gone. His soul was already in heaven and all that was left was an empty shell. My pastor felt that God would bless our decision to terminate life support and thus, we signed the papers (with a lot of tears!). We wanted to wait, however, until my parents had a chance to fly in from Wyoming and see him before we turned off the machines.

Of the 5 1/2 days of Mark's life, this was the worst day because of the "decision" and the loss of hope. Our dreams died today. And yet, it was also a special day because it was also the first time I got to hold my precious son in my arms. As I held him and drank in all there was to see knowing I wouldn't have many opportunities to imprint his face on my memory, I felt incredible joy. This was MY son and he was alive (even though he was going to die in a few days). I tenderly touched his chest and felt his little heart beating. Despite the wires and tubes, he was beautiful.

When I awoke this morning, I was cranky! I'm sure my sons were glad when I dropped them off at school :{. As I drove away from the school, I told myself that there was no need to be so grumpy. Yes, I was entitled to be, but no, other people didn't deserve to be the brunt of my crabbiness. I decided to be good to myself and bought a small dreamsicle statue of a little boy with a Christmas wreath around his head sitting on a blue cloud--my gift to myself since I couldn't give any gifts to Mark. And, I decided that I would also give the gift of kindness or at least politeness to those I encountered today so that Mark wouldn't be sitting on a cloud in heaven shaking his head at his crabby mom. The rest of day was peaceful, and I was truly glad (and thankful) when it was 3:00 and I could pick up my gorgeous little treasures from school.

I had promised to speak of the gifts of friendship today but I think I've used up enough space. I shall do so tomorrow and explain about Pen-Parents. For those of you who are newly bereaved, give yourself a gift--that of allowing yourself to grieve this holiday season. It's okay (and very healthy) to mourn! It's okay not to look at the bright side, to look for rainbows instead of rain. If you allow your feelings and your grief, you will see the gifts eventually. If you stuff your grief, you will never find those gifts left by your loved ones--and that my friends would be an incredible loss. Trust me! Many hugs!

Thursday, December 14
I spent most of the day with my mom. It was unexpected and unplanned. I had so much work to do for Prodigy and Pen-Parents but I know that my mom won't be with us forever so when she's asks, that's that. She told me Mark was the prettiest baby I had. At nearly 10 pounds, he was definitely prettier than the tiny 2 pounders in the NICU. Sadly, those 2 pounders made it, and Mark didn't.

Friday, December 15
The day started out to be very frustrating mirroring my mood. Our electricity went out at 8:15 a.m. due to the wild wind knocking down a tree that went through power lines. Without power, we had no heat, no means to open the garage door so my car was stuck inside, and NO COMPUTER. AHHH! The garage door manual lock had rusted so I had to send the kids to the neighbors for a ride to school. That was actually okay because the neighbor was delighted to help out. Isn't that what neighbors are for? I think we lived in southern California too long - we're scared to ask our neighbors for help. How sad!

Power was restored 6 hours later, in time to get ready for Greg's office Christmas party. BAH HUMBUG!!! I hate those things and since Greg started with this company in August, we're still fairly new. The people, however, were wonderful, very family oriented and NICE people! I laughed like crazy during the gift exchange and actually got a gift I like - a Coca-cola mouse pad. I LOVE coca-cola and I, of course, love my computer. What a great gift for me! The only down side was when Greg's boss was talking about his son and daughter-in-law who are new doctors in San Diego. Our sons were born in San Diego and my babies are buried there. (We've lived in Reno for 5 1/2 years). Their kids work at San Diego Children's hospital - where Mark died. The wife was talking about what a wonderful place it is, and all I could think of was my son died there 13 years ago tomorrow . . .

My folks did fly into San Diego on this day to see their grandson. The nurse, knowing Mark was to have special visitors, combed his pretty auburn hair with a toothbrush and slicked it back with a bit of baby oil. He looked quite dashing! But I think I liked the wild look better. Somehow, hair standing up all over is the look for a little boy. The nurses all teased us that they're surprised Mark didn't come out with a mustache and beard because he was so big. He had his own box of diapers because he was so big; they didn't normally carry diapers that size in the NICU. I was beginning to feel like a mom and cherish these things the nurses did to make us feel like Mark's parents. They encouraged us to participate in his care and not be afraid. I wish I had done more . . .

Both of my folks held him despite the wires and tubes and I took a lot of pictures. My dad didn't want to hold him but my mom thrust Mark into his arms. Once he got settled into the rocker, he seemed to just soak in the details and his fear and discomfort melted away in his grandson's glow. I felt proud to be showing off my son, somewhat oblivious to the horrible circumstances. Mark's nurse commented to my mom that she felt Mark was making his own decision about his life. She believed this strong baby was letting go of life himself . . . just as I getting more and more attached.

Saturday morning, December 16 - The anniversary of Mark's death

I woke up with a little arm wrapped tightly around my shoulder. I instantly knew Chad had crawled into bed with us. He's our surviving twin and will be 7 in January. He's a very cuddly delightful child, still full of hugs and kisses even those he's getting to be "that age." It was very special to wake up on this day with my baby snuggled up to me . . .

My brother, Michael, came to see his first nephew. We had decided to turn off the machines today. All the way to the hospital, I prayed Mark would die before we got there. What a horrible thing for a parent to have to do! It seemed so senseless and yet, I didn't want to feel responsible for ending his life - so I prayed he would die on his own.

When we got to the hospital, Mark was still alive but very weak. My brother asked to hold him and as he rocked Mark, they seemed to be in their own little world. Two minutes before the machines were scheduled to be shut off, Mark very quietly died on his own. When the doctor said he was gone, I scooped Mark from my brother's arms, and he ran away--this man who had been through the worst of VietNam with the 101st Airborn Division in the Army was in the bathroom throwing up.

My prayers were answered in a very bittersweet way. Mark had died on his own at 1:58 p.m. They said he was brain dead before that but I know that with the help of the angels, he mustered every bit of strength left to die on his own. We live with the decision for no heroics (thus no resuscitation efforts when his heart stopped) but we didn't have to live with having to turn off the equipment.

For the first time, I saw his entire face when we removed the respirator. He had seemed to be a perfect replica of his daddy but WOW! He had my nose and mouth!! We couldn't tell before because of the equipment. I held him without all the NICU junk for the first time, kissed his forehead and told him I was proud of him. Now that seems so ironic - to tell a child you're proud of him for dying . . . As I look back on it, I didn't hold him long enough. I should have undressed him completely and soaked in every detail. But I'm sure every bereaved parent feels that way. The "if onlys" and the "I should'ves" can get to you if you let it.

We had already started planning the funeral - planning a funeral before the death is an ironic experience. Mark was to be buried on the 18th. I shall write until then discussing my gifts from Mark and Pen-Parents . . .

Saturday evening - We spent a rather quiet day. I felt very melancholy most of the day. The boys and I decided to go to Taco Bell for lunch. With all the Christmas shoppers out and about, it was a mistake. People were everywhere, driving like maniacs, rushing about with frowns on their faces, pushing and shoving. Where's the Christmas spirit in these people? I wanted to scream at them - what's your problem!! Don't you know my son died on this day 13 years ago? I'm not pushing and shoving you!!! We ended up ordering our food inside and then taking it home where we giggled and joked and watched football. No wonder I'm a bah humbugger. I've tried very hard this year to separate Mark from Christmas so that I could enjoy Christmas more - but with the commercialization of Christmas, I think I'd be a bah humbugger anyway. My goal for next year - have all my shopping, etc done before December 1 so that I don't have to go out and witness the chaos and enjoy and foster the Christmas spirit in my home environment.

I had really hoped to have some people acknowledge today. My mom didn't call nor did anyone else in my family. One of my sweet online friends sent a note and that was it. I know, I'm selfish, but I really wanted today acknowledged instead of forgotten in the hustle and bustle of Christmas festivities. I think we tend to set ourselves up for this kind of hurt and I shall try not to do it next year. A few people acknowledged Mark's birthday, and it is too much to ask for people to also acknowledge his anniversary date.

Sunday, December 17
One of the gifts Mark gave me was the inspiration to start a support group for bereaved parents. Rather than the traditional type of group, I created a correspondence type of group where parents are matched together by the types of losses they have experienced. I started in 1988, did the first newsletter in February 1989 and the rest is history. We're now a non-profit organization with about 500 participants in the US, and chapters in Canada and Australia. It's been a dream come true and very inspirational for me, especially when I have an opportunity to meet some of these special people I've been writing to for years.

This summer, we had our first-ever gathering, and it was so wonderful!! I haven't laughed so hard in my life. It was a delightful combination of laughter and tears, memories and friendship. It will always be a special memory for me as long as I live.

Monday, December 18

Today is the day Mark was buried - the last day of my "Mark Daze." It was a beautiful but crispy December San Diego morning when my son was laid to rest. I tried so hard to fit into the pretty white dress I was wearing when I found out I was pregnant, but the c-section incision was still too sore and swollen for me to wear it. I ended up wearing a maternity dress and that just seemed so unfair to me. My brothers stood behind my chair at the gravesite, and they were shaking so hard, I thought they were going to shake my chair right into the grave. I remember thinking over and over how unfair it was that my son was in that tiny blue casket when he should have been burying me. It felt like there was a 500 pound horseshoe around my neck pulling me down - I just couldn't seem to stand up straight.

The Mark Daze are over again for another year. There are times when I dread going through them, but I'm always sad when they're over. This is the one time of year that I can really be intuned to him. I know I can be any other time of year, but this is HIS special time that belongs just to him. I just wish it was a different time of year.

And so again, I thank God for the gifts of Mark's life. I am reminded of a card given to me when he died that said, If I could sit across the porch from God, I'd thank him for lending me you. (Flavia) That is exactly how I feel! Mark was only meant to live 5 1/2 days, no less, no more. He accomplished more in those 5 1/2 days than most people do in a full lifetime. I am so glad I had him for those days.

'Tis better to love and lost than to have never loved at all.

Dear Mark Adam, we will forever feel your presence and love you always . . .

On Mark Adam's website:

Thank you for visiting!
Mark's mom