Ashleigh and Christopher

If this picture was featured in my "Classics and Favorites" series on my other blog... hands down it is a classic. Alan and I often traded baby-sitting. He took this picture while I attended the temple one morning. I love the expressions on their faces. What were they thinking? I LOVE them!!!

A few days ago while preparing dinner I was listening to the weather report on the news. Our winter has been unusually warm and on this particular day... February 7, it looked and felt like a beautiful spring day outside. As I listened to the news, my mind suddenly went back twenty-two years ago to February 7, 1990. It was my nephew Christopher's third birthday. But Christopher wasn't with us that day... he had passed away just eight weeks and one day earlier.

Christopher's passing was sudden, unexpected, and a shock to all of our family. I found out that day, in a very real way, that a broken heart was an actual physical pain. I couldn't even begin to comprehend how my brother and sister-in-law felt.

On this "first" birthday after Christopher's passing, the weather was much different than what I previously described. It snowed, and snowed all day long. It was winter at it's finest. Nonetheless, I felt a deep desire to go and visit the cemetery, so I drove up the mountain and parked the car. The snow was very deep on the hillside and still falling heavily from the sky. Through the years, there have been many times that we have waded through deep snow to find our little ones graves. The cemetery is a cold and lonely place on a stormy winter day.

I didn't know on that day, twenty-two years ago, what was looming ahead for me and my child. I didn't know then that my brother would become my "ally" of sorts, as we would soon be siblings both living the same... yet different experiences of going through this life with the devastating loss of a beloved child.

I'm sure that to our extended family the names Christopher and Ashleigh are synonymous to each other; they often are to me. During their short lives they knew each other well. They were playmates and friends, as well as cousins. They were born just three months apart and they left this earth in just over twenty-one months of each other. Each day that goes by takes us one day further from the time we spent with them here on earth, and at the same time... is a day closer to the unimaginably glorious reunion that will take place between parents and children. As the years have passed, my confidence has increased in my belief that Ashleigh and Christopher's "timing" together on earth and in heaven, is not coincidental.

They were the best of friends from their infancy.

As the "big" sister in the family, I always felt a certain responsibility to look out for my younger siblings. Isn't that what big sisters do? On August 16, 1990, it was my little brother Alan who was one of the first to arrive at my home upon hearing the news about Ashleigh. During a conversation between me and Alan before that fateful day, I clearly remember him saying to me that I would never have to worry about losing a child, because lightening never strikes twice. But lightening did strike twice, and this time when it hit, it was my little brother that was looking out for me.

My memories of Christopher are tender (you can read more here). He was an intelligent child. I can still hear his little voice in my mind and see his handsome face. Although I have mourned the loss of my own child, I can still shed tears that are exclusively for Christopher. He has a piece of my heart. I am grateful he is my family. I believe with all of my heart that he and Ashleigh are together, and that thought has brought me much comfort. They are lights to all of our family. A reminder to each of us that families really are eternal, that we must put effort into our relationships, and love one another unconditionally.

I love Alan and Marivic. They have been a source of strength to me through these many years; they are "rocks". Not only are they our family, but they have been friends to Mike and I, as the four of us have been on this "journey".

When I try to comprehend that joyous reunion I mentioned earlier, well... there are no words to describe. But, I'm hoping that my brother and I will someday be trading baby-sitting again when we give up our "empty-nester" lifestyles in order to raise our little ones during the millennium. Can you just imagine that day?

Love you Alan and Marivic!

All of the Marsden cousins in August of 1989, just a few months before Christopher passed away. I have always loved the fact that Christopher and Ashleigh stand together in this picture.

Christmas Wreathes

December 12, 2011

Another Christmas season has come and gone; and just like that... it's almost the middle of January. I think that many of us share similar traditions during the holidays; work parties, church parties, family parties, school concerts, visits with Santa at the mall, "The Nutcracker" ballet, the lights at Temple Square. We missed Temple Square this year; but, I finally got to go to "The Forgotten Carols" which I hope is a new tradition.

Although many families have similar traditions, we have a tradition that I'm sure few of our acquaintances share... that is our Christmas visit to the cemetery to place wreathes at the graves of Ashleigh and Christopher. This always takes place on December the twelfth, because that is the anniversary of Christopher's death.

Usually it is Mike and I and my parents who make this Christmas visit (Christopher's parents; Alan and Marivic, live in California). For Michael and I, this was our twenty-first Christmas visit to the cemetery. Most years the cemetery is deep with snow, and we have to be very careful as we walk up hill to the graves so that we don't slip and fall (especially Dad and Mom). When there is snow we have to dig to uncover our two markers. This is always done by my Dad and Mike, who then situate the wreath stands (after Mike confirms with me, "Christopher's wreath is gold and Ashleigh's red?"} and secure them into the ground; which is difficult because the ground is frozen, and because the snow is so deep, we aren't sure if the stands are in the ground or just in the snow. This year there was no snow so it was an easy task to stick the wreath stands right into the ground where we were confident they would remain until wreath retrieval. Wreath retrieval is usually up to me. I always go before New Years, because if I don't, we run the risk of the wreathes being removed by the cemetery people (that happened one year).

Our cemetery visits vary each year. Sometimes we are quick, and other times we spend a little more time; sharing some tender moments, sometimes a prayer together, sometimes a tear or two. It is truly a sacred spot. It has been dedicated through the power of the priesthood. On the morning of the resurrection, this is where I will greet my daughter. Can you imagine how that is going to be?

December 12, 2009

So, what exactly does this Christmas wreath mean to me? To me it is a representation of two gifts. The first gift... a visual acknowledgement that she is remembered by us. I can't buy her dolls or dresses anymore, nor can I fill her stocking, all I can do is place this wreath at her grave to show whomever passes by, that the little girl who is buried there is loved. The second gift... it isn't something anyone can see as they pass by her grave. It is simply... me. It is my renewed commitment to be a better person; to try harder to be the person I am supposed to be. To be kinder, more forgiving, to have more patience, to show more tolerance, to be less selfish, to murmer less, to serve more, to sum it up... to be more Christlike. That is my gift to her, so that on that glorious morning I can take her by the hand and say, "let's go home." And as Ashleigh herself said, "Oh... what a day." It truly will be.

The Forgotten Carols

A happy Ashleigh on Christmas morning 1988.

Tonight I spent an evening with Michael McLean. Well, me and a couple of thousand other people at The Forgotten Carols. It is interesting to note that this is the 20th anniversary tour of The Forgotten Carols , just like it is Ashleigh's "20th anniversary" this year as well. I share this experience on this blog and not my other, because when I think of Michael McLean's music... I think of Ashleigh.

My first memories of Michael's music are from the early days of Ashleigh's illness. I somehow accumulated a cassette tape of Michael's songs, which I listened to in the car as Ashleigh and I drove to and from radiation therapy on a daily basis. In Ashleigh's final weeks, her home health care nurse loaned me a video tape of Michael performing some of those same songs. I watched that video every day. The final song on that tape is Together Forever during which he asks the audience to think of someone they love who was not with them, and then invites the audience to sing along to the phrase, "... we can be together forever someday..." and then with more conviction, "... we will be together forever someday...". As a young mother whose heart was breaking, and with so much uncertainty ahead of me, I bravely sang along with Michael and his audience as tears rolled down my face. Tonight at the conclusion of The Forgotten Carols, Michael sang Together Forever , and again, invited his audience to think of a loved one who wasn't with them and invited us to sing along. The words, "... we can be together forever someday..." filled the auditorium as did the spirit. My heart was touched and my eyes filled with tears, as I sang those words with conviction, because I know that they are true, "... we will be together forever one day...".

Caitlin's Thoughts

by guest blogger Caitlin Leger

Aren't these sisters beautiful!?! I am grateful to Caitlin for her willingness to share some of her feelings about her sister Ashleigh. Although they never met in this life, they are sisters, just like any other sisters who have had the opportunity to grow up together, and Caitlin and Ashleigh's time will come... I have no doubt. Thanks Caitlin for your willingness to share... I know it wasn't easy.

When my mom first asked me to write a post to go on her Ashleigh blog I was very hesitant. I first of all had not read the blog yet, and secondly felt like there was nothing I could say. I never met Ashleigh on earth and didn’t know what I could write on a post that would be of any benefit for anyone to read on her blog. My mind has however changed since I have finally read the blog. I go to college and felt like I was always busy and didn’t have time to keep up with any blogs, but just a couple days ago I decided I would start reading from the beginning, now every free moment I have, I immediately go to my last spot on the blog and read on. I regrettably decided to even read during a lecture class I was in where we had a guest speaker, and while streams rolled down my face, I just hoped that the speaker was somewhat inspirational, and my classmates may have thought I was touched by her words. I decided that immediately after I read the latest post to start writing this one because I have been so influenced by this blog, and definitely can say I feel closer to my sister than ever. Hearing all of these experiences are very new and eye opening. I have called my mom in tears every day after reading the blog, or sent text messages to her, because I can’t even imagine what a heartache my family must have been through during this time. I of course have grown up knowing I have a sister named Ashleigh who passed away of a brain tumor. I have always grown up knowing exactly who Ashleigh is, and seen pictures, videos, and heard stories now and then about her life and her experiences, but not until this blog have I heard these details which have made me have such a deeper appreciation for my parents and my brothers and all of my family because of the sorrow that they must have gone through seeing their little girl go through all that she went through. I have always felt a little…well for lack of a better term “left out” in my family because of their experiences with Ashleigh. I know that my family all knew Ashleigh and were able to be with her here on earth. I also know they had to have grown closer as they supported each other in getting through her passing away. One day very recently I expressed this feeling of being left out to my mother. She told me with all confidence that she knows that I knew and know Ashleigh too, and that she is my sister and I should always feel close to her. And though I wasn’t there to experience Ashleigh’s passing away, my role in our family is a gift. I know that my family all views me as a gift, and now after understanding that, I realize how important that role really is. I am so grateful that my family has a testimony and knows that we will be with Ashleigh again. I know that my family was able to get through, and move forward, from such a hard and sad experience because they had so much faith, and relied on the Lord. I have also been very impressed with all of my brothers and their wives in teaching their children about their Aunt Ashleigh, and I know they all know her and love her. When I was born, my mom had to go through a very long labor. My parents have always told me that it was so long because I was saying goodbye to my sister in heaven. Knowing that I have a sister waiting for me in heaven has been even more of an incentive and a goal for me to live righteously while on earth so that I know I can be with my sister Ashleigh again someday. I love my sister Ashleigh and I know she loves me. I look forward to the day when I will be able to hug her and tell her how much I love her and missed her.

Primary Children's Medical Center (part 2 "oh what a day")

This picture was taken when we went for our first consultation at LDS Hospital Radiology (Ashleigh loved that aquarium), about a week after her surgery. Radiation therapy was one of the hardest things I've ever had to do in my life. I will be writing about that in a future post.

It was at the end of November 1991 that I received an important letter in the mail from PCMC; it was Ashleigh's medical record that I had requested be sent to me. I sat down at my dining room table that evening and began to read. This six page report included Ashleigh's recent medical and social history, a detailed description of Ashleigh's surgical procedure, a pathology report, and her discharge from the hospital summary. As I read, anxiety began to overcome me, the surgical report was so overwhelming, I really didn't understand any of it. My sons were in the living room just being typical boys, goofing off and making noise. I became more and more agitated as I read because I couldn't understand the complexities of what I was reading; adding to my confusion was the noise that the boys were making in the next room, ultimately it caused me to become impatient with my sons. I realized that this wasn't the time to do this, so I put the letter away for another day. That day finally came.

I had thought about this report recently and actually came across it quite by accident. I opened the envelope and found the six page report just as I had left it nearly twenty years ago, I also found the sketch of the tumor that Ashleigh's doctor at the Layton clinic had drawn for us on August 16, 1990.

On Monday morning, August 20, Ashleigh was taken to surgery. A biopsy would be performed where pieces of the tumor would be removed and studied. The doctor was confident that it was a tumor... but gave us a little bit of hope by telling us that "it could just be an infection", but the only way we would know for sure was through the biopsy. Shortly after we were settled in a waiting room, Mike was called to the phone. The call came from surgery, just to let us know that Ashleigh was asleep and doing well and that the surgery was about to start. Mike rarely speaks of this call, I'm not sure that he has ever spoken of it to anyone but me, but just as the person on the other end of the line was finishing the call, Mike heard the distinct sound of a drill. That is a memory that he has never forgotten.

The "waiting game" can be very long, tense, stressful, frightening, and much more... I wish I could describe adequately the physical and emotional feelings that I felt at this time. I can't, but I will try. You know that bad, sick feeling that you get in your stomach when you know you've done something wrong, or you just have a bad feeling about something? It's like that... only much, much, much... MUCH worse!!! We waited, with that sick feeling in our stomachs, for the Doctor to appear. It's funny how we were so anxious to find out that everything went well... at the same time, dreading to see the Doctor, and when we finally did, the sick feeling becoming worse just at the sight of her. When Dr. Wright finally came from surgery and gave us the news, it wasn't good... it was the brainstem glioma. Of course we were devastated.

The rest of this post I will dedicate to the most significant memories I have of the five days spent at PCMC. First of all, post surgery recovery. Ashleigh was brought to the Pediatric Intensive Care Unit (PICU) where she remained until Thursday, August 23, when she was able to go home. Many of our family members and friends came to visit us at the hospital. We were so blessed by the love and support that we felt during those few days.

I want to share a couple of comments that I copied from Ashleigh's and Christopher's "Family Friday" post on my other blog. This is what Alan and Marivic had to say about their visits to the hospital on the day that Ashleigh had surgery:

What Alan said: "I remember as Ashleigh’s diagnosis was in the early stages (the first couple of days) I got off work at KSL and headed up to Primary Children’s where she had undergone a biopsy. I had just missed Lesley and Mike who had been there the whole day, if not overnight, and had run home for an hour or two to freshen up while Ashleigh slept. So for a few minutes I was Ashleigh’s only family member at the hospital. She woke up and got a little fussy so I had the opportunity to hold and comfort my niece on what was surely an unpleasant day for her. She knew it was her Uncle Alan and seemed happy I was there."

What Marivic said: "Ashleigh was heavenly father’s instrument in giving me comfort and reassurance, during what must have been one of Ashleigh’s most painful time on earth. It was after her surgery. I don’t remember now, but Les and Mike must have left the hospital to go check on the boys after hours and hours of being with Ashleigh. Alan who had been holding Ashleigh had to leave too. Ashleigh whimpered and I asked the nurse if I could hold her. She told me it’s best not to move her but I could hold her hand so she would at least know I was there. I remember holding Ashleigh’s hands and whispering to her. I remember thinking she was mostly unconscious until she grasped my hand so tightly as if to tell me not to leave her. I sat there whispering to her, telling her how much we all loved her. I told her I think Christopher knows she has an owie and if he is allowed to I’m sure he will be there for her, and if he drops by to make sure to tell him his Mommy said Hi. I remember crying for her and Christopher but there was a reassuring calmness on Ashleigh’s face and I felt peace. It seemed as she pressed my hand that she was comforting me instead of me comforting her. Then Lesley came, and as soon as she spoke, Ashleigh relaxed her hold on my hand. She knew her Mommy was back."

The PICU is a big, long room with beds lining both sides. There was a wall behind us and curtains in between the beds for privacy. I remember holding Ashleigh in my arms as I sat on a chair next to her bed. The two of us were alone at that moment and she clung to me as if she never wanted to let go. An 18 month-old girl was being brought to the bed across from Ashleigh, she had just had surgery to remove a brain tumor... and it was successful. There I sat, all alone, holding my frightened and traumatized daughter, and watched the "celebration" of another family that was taking place just a few feet from me. I wanted that to be us. But it wasn't.

I mentioned in my August 16 post that my mother-in-law had had surgery on the day we found out about Ashleigh's tumor. My father-in-law didn't want to tell her about Ashleigh until my mother-in-law was home from the hospital. Bonnie (my MIL) is devoted to her family, and somewhat worrisome about all of our well being. I remember her coming to PCMC, barely able to walk herself after her surgery, and the strength and courage that she exhibited in a positive way, I will always appreciate it.

My brother-in-law Tony came to the hospital as well. I remember standing outside the front doors of PCMC when he gave me a hug. That hug was so tight that it hurt, but I recognized that Tony was hurting, and that hug brought much needed comfort to us both.

Besides the visits from our family and friends, many people sent kind cards and gifts. All of it was appreciated. Our friends the Websters came to visit, Janet who was an excellent seamstress had made Ashleigh a darling outfit which she wore home from the hospital.

One afternoon as I sat with Ashleigh in the hospital, she looked at me and sighed as she said, "ooohhhh, what a day." My precious, little 3-year-old daughter had already experienced some of life's most painful trials. Even now, twenty years later, occasionally one of us will say, "what a day" and the other knows exactly what those words are in reference to.

We took Ashleigh home on Thursday, August 23. It was good to have her at home, back with her mommy and daddy and her boys where she belonged. Our journey was just beginning.

Primary Children's Medical Center (part 1)

PCMC is a little world within a world. There are many dedicated medical personnel who work there, as well as volunteers who try to bring some peace and comfort into the lives of the patients and their families. One of the volunteers that came to visit Ashleigh a day or two following surgery, brought this cat along to provide a little comfort. I felt a little sad when I chose this picture to post. On all of the previous posts the pictures I've shared have shown our happy girl... she looks so weary here. I can only imagine what must have been going through her mind at this point in time.

Many people have come into our lives since Ashleigh's death... people who didn't have the opportunity to know Ashleigh in this life. She has a sister, sisters-in-law, nephews and nieces, cousins, and a couple of aunts and an uncle who have all become a part of our lives, as well as new acquaintances we've made through the years.

I have often shared Ashleigh's story verbally... but this has been my first attempt at writing it. Some of the experiences are vibrant in my mind... others are not. I mentioned in one of the first posts on this blog, that I made a video tape "journal" of sorts shortly before Ashleigh died. I had never watched that tape until recently. As I watched and listened, I was reminded of several things that I had forgotten... I also regretted that I hadn't shared more experiences.

Our experience at PCMC is one that I don't remember every single detail perfectly, but I do remember it well. We did receive the phone call from PCMC that Thursday evening August 16, just as the doctor told us we would, we were told that we were to be at PCMC the following Sunday morning August 19.

To say that we were in a state of shock for the following few days would be putting it mildly. Our lives were changed immediately, and would continue to change with each bit of information we received.

Our phone didn't stop ringing and many people came over to our home. Although I appreciated all of the love and support we received, at times it was overwhelming and a bit wearisome, especially when answering peoples inquiries and telling the same story over and over. At one point our friends the Welches, loaned us their answering machine which became very helpful. This was a time when our conveniences of today such as email, texting, facebook, and blogging would have been very helpful. Nonetheless, we truly appreciated the outpouring of love we received. We needed it.

On Friday, August 17, I drove back to St. Benedict's Hospital to pick up Ashleigh's MRI results which we were to take with us to PCMC. It was a strange feeling, holding that over sized envelope in my hands, knowing that significant information concerning Ashleigh's future was literally in the palm of my hands. It would have been nice to simply destroy the contents of that envelope, as if doing so would make all of the bad stuff disappear... unfortunately it wasn't that easy.

We reported to PCMC on Sunday morning as we had been directed; my parents accompanied us. Ashleigh was admitted as a patient and we were shown to the room where she would stay.

It was a surreal experience being there at PCMC. It hadn't even been 72 hours since we were told that Ashleigh had a tumor, since then our lives had been turned completly upside down. As we waited in Ashleigh's room for the Neurosurgeon to come see us, my heart was very, very heavy and my stomach was in knots. This was the scariest, most frightening experience of my entire life.

We've all seen the movies... those scenes where the doctors sit at a big, fancy desk with some poor soul sitting across from them, and they break the bad news... gently. It wasn't that way at all. Suddenly the doctor; Dr. Wright, came into the room... with her entourage. I don't remember how many were with her, but she had a few others in tow. She introduced herself and we all stood around the room (no fancy desk) as she took the MRI pictures from the envelope and held them up to the light. She started to explain to us about this tumor, it was called a brain stem glioma (I just spell checked glioma... the options the computer gave me were gloom and gloomy... how appropriate), you see, the tumor grows in the brain stem. It was impossible to operate in the brain stem, maybe near it, or on it (not good chances there either), but not in it. She continued to explain that Ashleigh could have radiation therapy, if we chose to do that (she repeatedly said, "if you choose", OF COURSE WE CHOSE). Radiation would shrink the tumor... but in a year or two the tumor would come back. My question to her was, "and then we do radiation again?" At this point the harsh reality was made fact as she told me, "no... you can't do radiation again." Basically what she was telling me, and did tell me, was that the tumor would indeed grow back and that there was nothing we could do.

In that instant, it seemed as if it was just me and the doctor alone in the room... facing each other. Everyone else was still there... but it was like an unbelievable dream and they were all a part of it. Although I was looking the doctor directly in the eyes, I could see my mom sitting on a small sofa directly under the window, with Ashleigh at her side. At the same time I saw Mike's reaction as he turned his back, and my dad's arms went around him, I knew Mike was crying, dad was saying something to him... I don't know what. And me... I stood there and faced the doctor... and I didn't shed a tear.

She explained, that on Monday morning Ashleigh would go into surgery and a biopsy would be performed. This would simply verify that everything she had just told us was in fact... the truth.

That Sunday was one of the longest days of my life. We wandered the hospital with Ashleigh, there was a playroom that she enjoyed, and we spent time in her room. She was still dressed in her own clothes, at this point she didn't look like a "patient".

I remember walking the halls of the hospital with my mom when we saw a huge whiteboard with patients names written on it. There was Ashleigh's name; it was surreal seeing it there. I loved how we spelled her name, it was beautiful. I remember as we stood there, that I made a comment to my mom about our choice in how we would spell Ashleigh's name when she was born, and that I never imagined seeing it on a whiteboard in PCMC, in the circumstances we were in now.

I don't remember when my parents left, but they would return to be with us the next morning. Mike and I weren't prepared for an overnight stay in the hospital, we really hadn't known what to expect when we left home that morning. When bedtime came, Ashleigh was able to put on a hospital gown and get cozily into her bed, while I laid next to her and Mike settled down on a chair... both of us fully dressed. It would be a long and uncomfortable night. It wasn't until Monday afternoon that we were able to go home (briefly) to shower, change, see our boys, and then go back to the hospital.

Thank You Friends

This is Ashleigh and the boys in the spring of 1989. She loved and still loves "my boys" as she always called them.

I have mentioned previously on this blog that I debated for a long, long time about doing it. I know that writing Ashleigh's story is definitely a good thing, but, my concern was... doing it so publicly, is that a good thing? Yet, I continue to type away, and when I come to the point where I have to click on "publish post"... I do.

I appreciate the comments that I have received from my friends and family. Not just in the comment section, but the ones I have received through e-mails, facebook, notes, and even comments made to me personally. These kind words tell me that this is a "good thing" and that I should continue.

I wish I had unlimited time to write on this blog... but I don't. I am busy just like everyone else and blogging is just one of the things I enjoy to do in my "down time". I am currently writing a post about our experiences at Primary Children's Medical Center, and I have a few other posts already on the schedule as well, with more to come. I have also asked five people to be "guest bloggers" on this blog, three of them are "Ashleigh's boys" who have each consented to share their memories of their little sister, and equally as important, the impact this experience has had in their lives. I am really looking forward to reading what they have to share. The other two are Ashleigh's daddy (who enjoys reading both of my blogs, but doesn't comment or write, but has consented to do so) and Ashleigh's sister Caitlin. Although Caitlin was born 18 months (to the day) after Ashleigh died, she knows and loves her sister.

So off to work I go, and hopefully I will get a little "down time" later. We'll see.