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.

I'm Trying To Be Like Jesus

This picture was taken at my parents home on Thanksgiving Day 1990. This is less than one month after Ashleigh completed radiation therapy. She is a happy and normal three-year-old. Every symptom she had, with the exception of her eye turning in, had completely disappeared at this point. This is the picture that I refer to in this post.

The primary program has always been one of my favorite sacrament meetings of the year. I love seeing so many children standing at the front of the chapel, singing and saying their parts for the ward members, their parents, and of course visiting grandparents. It is especially enjoyable to watch the little three-year-old sunbeams, they are usually more concerned with being able to see their moms and dads, and waving at them, than participating in what is going on. The primary program can definitely touch my heart as well as my funny bone.

Each January when the new primary year begins, it is always a bonus when there is a three-year-old in the family ready to start going to the sunbeam class. In January of 1991 Ashleigh was our new sunbeam. Unfortunately, primary didn't really work out for Ashleigh. I remember we often had to go sit with her in her class, and if she went to class without us, sometimes a member of the primary presidency would end up bringing her to us.

One Sunday her teacher called and asked if Ashleigh could bring a picture of her daddy to class. We found a picture of the two of them, which Ashleigh lovingly held in her hand as she went to class that day. I was so happy that she was cooperating, until a short time later when we were summoned from our class. Ashleigh was crying and unhappy and wanted us, but even after she had us... she continued to be upset. We didn't realize what she wanted until she cried, "my picture"; they had brought her to us and forgotten to give her back her picture.

The primary program in 1991 was within just a few weeks of Ashleigh's death. It was a hard Sunday for me. The "year of firsts" is commonly known as; first birthday, first Christmas, first family vacation... the first "everything" without your loved one with you. The primary program was one of those days; not only was it a "first", but it was "in my face" right in front of me. There were all of the children in the ward... except Ashleigh. There were all of her little sunbeam friends... except Ashleigh. The song that the children had learned that year was "I'm Trying to be Like Jesus". It is a beautiful song, and we had sung it in our home often throughout the year, hearing the children sing it on that day was so difficult. It was without a doubt, a hard, hard Sunday, and by the time I returned home from church, I was pretty distraught.

I really only remember that I went into Ashleigh's room, shut the door, and collapsed on her bed. I sobbed into her pillow, I probably fell asleep for a while, and I sobbed some more. I remember hearing our home teacher arrive, but I stayed in the bedroom. I couldn't hear the conversation, just the low hum of voices in the other room. I spent several hours lying on Ashleigh's bed before finally coming out. It was a difficult day... there were many others ahead. But when I came out of Ashleigh's room that Sunday night I moved forward, it was very, very hard at times... but always forward.

This morning I attended my grandson Mason's primary program... he is a sunbeam. My heart swelled, and I know that I had the biggest grin on my face as I watched him singing the songs, and especially when he said his part so clearly and perfectly. I admit, I shed a tiny tear as he sang "I'm trying to be like Jesus, I'm following in his way..." but it was a tiny tear of joy... for that handsome sunbeam boy, my boys little boy; and for the reminder, that I'm trying to be like Jesus... too.

A Mother's Thoughts

These are the thoughts that I prepared to be read at Ashleigh's funeral, by my friend Lola Stansfield. I was tempted, briefly, to "edit" my writing (which I hope has improved through the years), but decided that it should be printed just as I wrote it twenty years ago.

It's hard to know where to begin when I talk about my Ashleigh. If you will just let me share with you for a few minutes some of my feelings about her maybe you will be able to understand in a small way what a great joy she has been to me and what a privilege and honor it is for me to be her Mother.

Ashleigh was a precious gift to me from my Heavenly Father. She was an answer to my prayers. This past year we have been hoping and praying for a miracle, but I have seen many miracles this year. I have seen the miracle of friendship, of sisterhood, of service given freely, of extended family bonding together all because of one little girl. I have seen the miracle of love. The unconditional love our Saviour has for each of us. That is the love that Ashleigh has for me. That is the love she has for her daddy and for her boys.

Ashleigh is such an important part of our family. She's our little Princess. She always loved to get dressed up pretty. On Sundays if she had on a new dress, she always came into the living room to twirl for her daddy and her boys. The boys used to sing to her, "Isn't she lovely, isn't she beautiful." or "hey, did you happen to see the most beautiful girl in the world, and if you did was it Ashleigh?"

You can see the boys love Ashleigh just as much as she loves them. When I asked my Heavenly Father to send me a daughter, I explained to him that I wanted my boys to have a sister in the home so that they would learn how important it is for them to honor the daughters of our Heavenly Father. They treated their sister the way a precious daughter of our Father should be treated.

There's always a special relationship between a daddy and his little girl, and Ashleigh was very smart. She knew she had a good thing going. Michael did everything he could for his little girl and more. If you came to our house on an evening you'd probably see Mike laying on the floor and Ashleigh sitting on his back reaching over his shoulder into a bowl of popcorn.

Occasionally Ashleigh and I would take a day off and go on the road with Mike to Preston, Idaho. While he visited his stores the two of us would visit our favorite stores. Mine was the craft store and Ashleigh's was the basement of King's. That was where they kept all of the toys.

Michael understood the special relationship that Ashleigh and I had also. He never denied me the joys of spoiling myself with frivolities for Ashleigh. If I came home from shopping and showed him a pair of Osh Kosh socks I'd spent $5 on just because they matched the outfit perfectly, he never complained. He just laughed and said, "Oh, won't my little girl make a fashion statement."

At the end of July he supported me patiently as I insisted on painting and re-carpeting Ashleigh's bedroom. It made me happy to see my little girls room, the way I'd always wanted it to look. I wanted it to be a beautiful room for angels to visit.

Ashleigh and I used to sit in the living room, and Mike would be on the floor or the couch, and I would point to him and say, "he's mine." Her eyes would light up and she'd say, "he's mine."

"He's my Babycakes." I'd say.

"No, he's my Babycakes." She'd reply.

After going back and forth a few times, the two of us would jump up and see who could get to him first, and we'd kiss him and hug him, and Mike would go along with the game by trying to decide who he belonged to.

Sometimes Ashleigh started the game first and sometimes I would. And then there were those days when Ashleigh would start, "he's mine" and I would say, "you can have him."

Can anyone in the ward forget the day that Becky and I sang, and Ashleigh and Morgan came up on the stand to entertain you? Poor Becky, they were standing right next to her, laughing and waving at the congregation. When I realized what was happening, I just looked at the music and thought, "just a few more lines and it's over." I could already feel the laughter rising in my throat. Ashleigh had a great love for Becky and Morgan.

Ashleigh used to say, "I love this" or "I don't love that." She didn't usually use the word like. One night Mike, Ashleigh and I were over at the Johnson's. We had been eating some treats and as we were leaving Steve picked up a piece of half eaten candy and said, "someone didn't love this."

I used to say to people, "I can't believe I got a girl, and a good one too." And she was good. She always obeyed me. When I lay in her bed with her at night, my favorite story to tell her was how I prayed to Heavenly Father for a baby girl, and that she was the baby girl I prayed for. That I wanted her to be a kind girl and to love others. She was a very kind girl and she did love others.

Sometimes you may hear me say that I have a family of fussy eaters. Ashleigh always ate everything I put in front of her and she always used a "dingelhopper."

There have been times this past year that Ashleigh sometimes showed bad behavior, maybe a little bit of a temper. She didn't want her mommy to leave her. Often times I took her with me wherever I went, and sometimes if I left alone, Mike ended up bringing her to me.

She went through as lot for a little girl. She didn't understand what was happening to her. She was frightened, and fought this sickness from the very beginning. While in the hospital last year she looked at me and said, "ohhh... what a day!"

Ashleigh has a great love for all of her family. At Christmastime, I asked her Grandpa Leger if he would build a little crib for her doll, Comfort. We went to the store (Leger's Deli) in Park City one day and Grandpa had the crib finished and in a box. We tried to sneak it in the car and Ashleigh said, "is that my Comfort's bed?"

She loved to play with her cousins, particularly those closest to her (age); Russell, Melissa and Ammanda. She loved her cousin Christopher. I tended him for a while and the two of them were quite a pair. They used to watch videos, and one day the two of them were sitting in front of the TV watching Alice in Wonderland. Ashleigh pointed to the TV and said, "look, a fafa fly." Christopher turned to look at Ashleigh with a disgusted look on his face and said, "that's not a fafa fly, it's a butterfly, look a pink butterfly and a blue butterfly."

It broke my heart when Christopher passed away nearly two years ago. My cousin passed away when I was a child and I missed the friendship that we could have had, and now Ashleigh would grow up missing that too. But Ashleigh and Christopher are together now, and that thought has made it easier for me to let her go.

When Christopher's baby sister was born last October, I told Ashleigh she needed to take care of Tara because that's what Christopher wanted her to do. If anyone talked about babies around Ashleigh, she would say, "my baby is Tara." Even at the beginning of July, as she rapidly lost her speech, I would ask "Ashleigh, who's your baby?" and she would say, "Tara."

Ashleigh loved her friends. All last winter she talked about her birthday, and we planned to have a party with her friends. As her birthday approached, I knew her tumor was back, and I prayed, "Heavenly Father, please let her have her birthday." Her birthday came, her friends came, we had fun. She could hardly walk by then, but she was content and happy watching her friends have fun. The night of her birthday I prayed, "Heavenly Father, she's had her birthday, if you want her now, you can have her." But our Heavenly Father does everything in his own time. He knows His plan, he allowed us to have Ashleigh a while longer, so that we could learn true service and what it means to endure to the end, and what it means to love unconditionally.

We were able to take Ashleigh to California in June. Many of our extended family went and we had a great trip. On the way down we stopped to spend the night at the Peppermill. I took Ashleigh to the pools for a short time, but then the two of us returned to our room alone. It had been a long day of driving and Ashleigh was hot. As she lay on the bed I became scared, and I thought, "what have I done, I'm out here in the middle of the desert with a sick child and I don't even know where a hospital is." So I got down on my knees and said, "Heavenly Father I'm scared, my Ashleigh has a fever and I'm out here in the middle of nowhere. I'm just a mother asking you to make my baby well, and to let us have this trip we all need." Her fever went away.

The next day our drive to the beach house went great. Our entire week was uneventful and we had a marvelous trip together. My Ashleigh-O never complained. She sat patiently in the beach house waiting for any one of us to take her to the beach. On the beach we would sit her in a lounge chair with an umbrella to shade her, she'd sit there for hours, happy to watch the rest of us romp and play.

She was unable to sit up very well without her back supported, sometimes Granpa Marsden would dig a little hole in the sand and set her in it, and build the sand up to her waist to help support her. He's give her a bucket and spade to dig in the sand.

She tried so hard to communicate with us, but her speech was becoming very slow and slurred. She would say, "I want a..." but at times we couldn't understand the rest, so we'd run around the beach house, pointing at things until her face would break out in a grin and we knew we had the right thing.

I used to love to say, "I love you Ashleigh." Because when I did she always grinned and she said, "I love you too." When we drove in the car with just the two of us, often times we would be holding hands. I remember one day the two of us were driving to Preston with Mike, and we were enjoying our conversation. Mike got a little excited as he talked and Ashleigh misinterpreted his tone as anger. She said, "daddy don't get mad at my best friend."

Ashleigh is indeed my best friend. Our relationship has been very special. She has been my constant companion for four years, four months and four days. We loved to go shopping, to lunch, to go on walks, and to sing songs. We did everything together.

This last year has been a happy one. Our Heavenly Father was watching out for us. Our Christmas holiday was the best ever, our vacation as I have mentioned was wonderful. Ashleigh went through a lot for a little girl, nearly eight weeks of radiation therapy on a daily basis, three MRI's, and brown medicine. Ashleigh fought it the whole way. She also went through eye surgery, wore eye patches and glasses.

One day in the early stages of radiation I became frustrated. She wasn't cooperating. I couldn't get her to understand I was fighting for her very life. I said to her, "if you don't do it for yourself, do it for the loved ones in your life." She went through all that for me, because she loved me. Just so I could have her for a while longer.

We never told Ashleigh what the doctor told us. I didn't feel it was necessary to explain that to a three-year-old. I don't regret it now. I had to prepare her in my own way. Remembering I've always held fast to my faith that my Heavenly Father could heal her if it was His will. I taught her that Heavenly Father and Jesus love her. I taught her to pray to Heavenly Father and ask him to "make a me better."

These last couple of months as she lay semi-comatose, I talked to her. I told her it was okay if she had to leave me, that I wanted her to be with me, but if she had to go, I would be okay. And I am. Heavenly Father has made her better, he has given her the greatest gift of all, eternal life in the Celestial Kingdom. She has earned it, she deserves it. And we must all remember that she is His Ashleigh too, she was His Ashleigh first.

I could talk about Ashleigh all day, please let me. When you see me, don't be afraid to approach me. If I want to talk about her sometime, please just listen for a few moments. I want to share her with you. You all have seen how special she is.

Families please love each other. It is Heavenly Father's plan that we be in family groups, that is so important. On Tuesday night when Mike and I and the boys were alone together for the first time that day, we went into Ashleigh's bedroom. I pointed to her beautiful dresses hanging in the closet, to her toys, to all the beautiful things I have collected for her. I said, "boys, Ashleigh didn't take any of these things with her. These things are just objects, they are not important."

Yes, brothers and sisters we do enjoy our things, and some of them are important to us, but not if we put them ahead of our Heavenly Father, ahead of doing those things that we should be doing to ensure our place in the Celestial Kingdom. In closing, I would like to share a poem written for me by someone dear to me and to Ashleigh.

Answer to Prayer
by Terri Johnson

"Dear Father, please send me the gift I desire,"
Her plea from God's temple was heard.
An earnest petition from a daughter of faith
humbly taken before the Lord.

"My daughter," He answered, I've heard your prayer.
And your righteous desire will be.
I'm sending to you the most precious of gifts,
A daughter for eternity."

The grateful young mother held tight in her arms
a bundle more priceless than gold.
"Dear Father, I thank thee for answer to prayer.
I thank thee for this daughter to hold."

Then, another prayer from the temple was heard.
This one came with faith greater still.
"Dear Father, I place her life in thy hands,
Please help me to know thy will."

Heavy rains fell and all nature mourned,
as Father, Himself must have wept.
The gift given here could no longer remain.
She was peacefully called home while she slept.

The gift still remains that he promised to her,
for eternally she will be theirs.
And comfort He sends as He cradles the child
who taught them of answers to prayers.

I look forward to the day when my Heavenly Father puts my child back in my arms, and then I will sigh as Ashleigh did, and say, "Ohhh... what a day."

Redeemer of Israel

This is the cover of the program at Ashleigh's funeral service. I'm sorry, I don't know who the artist is who originally drew the picture, but Doug Vandegrift "adapted" it a bit for us by adding full bangs to the child's hair so that she resembled Ashleigh, and Becky Johnson did the calligraphy at the bottom. On Tuesday September 20, the anniversary of Ashleigh's funeral, I am going to post the talk that I wrote for that occasion.

Redeemer of Israel is without a doubt my favorite hymn. Nearly thirty years ago it was sung as a congregational hymn at my grandma's funeral. I remember asking my mom why that particular hymn was chosen, her answer was that it was neither too glum, nor, too overly joyful for the occasion. Since then it has been sung at my grandpa's, my nephew Christopher's and Ashleigh's funerals. I affectionately and respectfully refer to it as our families funeral song.

Whenever I walk into the chapel and see that hymn #6 is posted as one of the hymns that day (as it was two days after Ashleigh's funeral), I am always happy. Rarely is there a General Conference of the church that Redeemer of Israel isn't sung during one of the sessions. Today we sang it in relief society, and Michael heard it being sung in our 'home ward' (we attend the singles ward) while he was walking down the hall. My favorite arrangement is that of Mack Wilberg, which is performed by the Tabernacle Choir and the BYU Men's Choir. On a Sunday morning when FM100 is playing the Sounds of the Sabbath and Redeemer of Israel comes on, the volume is turned up so that the whole house can hear.

This morning I had an interesting experience. I was home alone and sleeping unusually late. I woke up and looked at the clock and thought, "I should watch the choir, after all, they know what an important weekend this is in my life (silly me), maybe they are singing Redeemer of Israel today." First of all, I really don't ever make the time to watch the choir on Sunday morning, Mike did faithfully each week, but now he's in meetings every Sunday morning and so he can't. So why was my first waking thought that I should watch the choir? I turned on the TV to channel 2 (see my mistake?) it took me a couple of minutes to realize my error and I quickly turned to channel 5 where the choir and orchestra were in the middle of... Redeemer of Israel (had I gone to channel 5 in the first place, I would probably have caught the song at the very beginning).

This is not the first time I have seen the Lord's tender mercies directed to me, through music. I joked about the choir knowing what an important weekend this is to me, but... He knew, and He was letting me know that He knew. And that is something... that I know.

Ashleigh's Day

This picture was taken in March of 1991. This is the picture that our friend Doug Vandegrift used as a model, to do an oil painting of Ashleigh for us, it hangs in our living room. Ashleigh's left eye is noticeably turned in. Soon after this photo was taken she had surgery to straighten her eye; it was successful. Less than a month later, signs that the tumor had "come back" were becoming obvious to us.

Early this morning Michael and I went to the cemetery. The morning sky was overcast and the grass was wet, due to the rain during the night... and probably the sprinklers too. We were completely alone, except for two deer standing on the grass; they disappeared into the bushes shortly after we arrived. We brought our traditional dozen short-stemmed roses, eleven pink and one white, and placed them in the vase at her grave. There were probably only a half-dozen graves with flowers on them this morning, her roses stood out against the backdrop of green lawn, it was beautiful and peaceful.

Today is Ashleigh's day.
To me it is a special day...
maybe even sacred.
It has been twenty years.
That seems unbelievable.
I think of her every day.
But on this day I reflect.
I feel gratitude.
I'm glad she is mine... forever.

The Day Before

This picture was taken about 2 weeks before Ashleigh died. Becky Johnson fixed her hair and put the pretty ribbons in it. After the picture was taken, Ashleigh threw up all over her beautiful dress. Janet Webster immediately rushed the dress to the cleaners. My friends knew what I wanted that dress for, and Janet told the cleaners that we needed it asap, without divulging to them the reason. Ashleigh was buried in that dress. The day after the funeral I received the picture in the mail.

I don't remember very much about Monday September 16, 1991, I really only have two significant memories of that day. But first, I'm going to back up just a bit.

Ashleigh had been on a feeding tube since July 2, which of course meant that she was in our constant care. For two and a half months I was pretty much home bound. I will write more about things that happened during this time in a later post.

The doctor (Neurosurgeon at PCMC) explained to me in July, what would happen as Ashleigh's illness progressed. One of the most important things she told me was that Ashleigh would eventually become semi-comatose and then comatose, which would indicate that her time was very close.

Twenty years ago today, I knew that the time was at hand, Ashleigh was in a comatose state. Late, on Sunday evening September 15th, Ashleigh had a fever. This was not an ordinary fever, it was one like I had never seen before. Half of her body was hot... and the other half was cold. But the real out of the ordinary was this... it wasn't a split-down-the-middle half, it was a right arm and torso/left leg, and left arm and torso/right leg half. Did that explanation make sense? I had never seen anything like it.

At about 10-ish on that Sunday night (during this fever time), my brother Tim called to tell me that my niece Megan had just been born. That was joyous news to receive amidst the turmoil we were experiencing. It is interesting the way that life unfolds, my sister-in-law Margie had spent much of the summer on bed rest waiting for baby Megan's safe birth. I on the other hand, spent the summer waiting for the opposite where Ashleigh was concerned. Megan's birth and Ashleigh's death were less than 36 hours apart. Twenty years ago, births registered in the local hospitals were printed in the local newspapers, so... Megan's birth announcement and Ashleigh's obituary were on the same page in the SL newspapers, and I still have a copy of one of those papers.

So, back to September 16th. My first memory is very simple, I'm not really sure why I'm sharing it, but I think it is somewhat significant. I simply went to the grocery store. It was late in the afternoon, I don't know what I purchased, I don't know who was at home with Ashleigh, I just remember going to the store and being away from my "present" world for just a few moments. I was exhausted. Worn down. My strength was almost gone. I knew it and I felt it. I felt alone. I don't think I looked very well. You can see a lot by looking into someones eyes.

My second memory is very tender and heartbreaking. You may not want to continue reading. Later that evening my parents came to visit. My parents are amazing people. They love their family un-conditionally and they take good care of all of us, and that night I needed them (I still need them).

I was sitting on the couch, holding Ashleigh who was cradled in my arms. My dad sat on one side of me and my mom on the other, and they each had their arms tightly around me. There is something comforting about being in the arms of your parents, even when you are 33 years old. My parents hurt; they hurt for their baby girl, just as I hurt for my baby girl. I had been pretty brave throughout the past 13 months, but I cried as I sat there, safe in my parents arms. I'm crying as I write this, because I will never forget my anguished sob as I said to them, "I'm the one she wants." And of course they agreed, she didn't want to leave me, she loved me. But someone else wanted Ashleigh. Someone who loved her so much. Someone whose pain far surpassed mine, and made it possible for me to bear this pain.

Nearly Half-way There

I like this quote that I found on my sister-in-law Marivic's facebook page today. Thanks for sharing Vic.

‎"We can never judge the lives of others, because each person knows only their own pain and renunciation. It's one thing to feel that you are on the right path, but it's another to think that yours is the only path.” Paulo Coelho (author, Brazil)

This week is one of great significance in our family. Saturday, September 17, will be the twentieth anniversary of Ashleigh's death. Twenty years seems like such a long time. It is a long time. I remember in April of 1991, shortly after we knew that Ashleigh's tumor had come back (it never went away, it really had only shrunk after radiation therapy, but I have always referred to it as "coming back", so I will continue to do so) our Bishop came to visit us one evening (we loved our Bishop, and so did Ashleigh, she once told me, "the Bishop is cute"). We were unaware at the time that the Bishop was soon to be released, so I think he came to check on us "one last time" before that happened. He spoke comforting words to us, and taught the gospel that night in reference to eternal life and eternal families. As I held Ashleigh in my arms, I remember looking at him and saying, "I understand and believe everything that you are saying Bishop... but I need to know how I'm going to make it through the next fifty years?"

So here I am, twenty years into my fifty, and what have I done? Well... I've lived. In the beginning it was often day to day survival, sometimes minute to minute. At times the grief was so suffocatingly, indescribable, it really was like a bad roller coaster ride of emotions. Have you ever buried your face so deep into your pillow and wailed; wailed so loudly that you wondered if your neighbors could hear you? I have. Eventually you don't do that anymore, and you're not really sure when you stopped... you just did. Although I've hurt so deeply, and cried more tears than I ever thought one persons tear ducts could hold, I've never questioned for a moment the eternal plan of a loving Father in Heaven. I acknowledge that I have been very blessed in my life, even through my trials. I remember a day not long before Ashleigh died, I was in my living room looking out of my front window, watching; life seemed to be going on all around me, and yet, at that moment I didn't feel like I was a part of it, my life felt as though it was in limbo. But even in that moment, I knew there were people whose trials were worse than mine. I thought of a mother, somewhere in the world, who was perhaps going through the same experience as I was, without the knowledge of eternal life and eternal families. I've tried (sometimes harder than at other times) to do and be my very best. I've watched my boys grow up, serve missions, get married and have their own children. I've been blessed with another daughter who has truly been a gift to our family. The statistics of marriages ending in divorce after the death of a child are shockingly high. I'm so grateful for Michael... I can't even imagine going through this experience without him by my side, he's the only other person in this world who can know and feel the way I do about our loss. I am very blessed.

So I will continue on in my "fifty" years. I will someday have a joyous reunion with Ashleigh, I can't even comprehend the joy... the thought is overwhelming. Although I look forward to it... I'm not in any rush, life is good to me and I have people here that I love just as much. I hope she is proud of me... I know that I am so proud of her.

The "Worst" Day of the Rest of my Life (part 2)

I have always loved this picture of Ashleigh and Uncle David, with Andy looking on in the background. It was taken just 2-3 weeks before the diagnosis. When I look at this picture I feel so much gratitude that she is mine.

Just a few days ago Mike and I were coming home from Logan. I wanted to stop at a fun shop in Fruit Heights that I enjoy, so we exited the freeway and traveled east on Highway 84 between I-15 and Highway 89, where we exited and continued to our destination. Highway 84 was the same route we took from the hospital in Ogden back to the doctor's office in Layton, on August 16, 1990... except we were heading west on that day.

I have seldom driven on that road, before or after that day, but every time I do... I remember. I guess I could call it "the road less traveled", and that's probably a good thing, because I don't ever want to travel that "road" again.

When we arrived at the doctor's office in Layton (for the second time that day), Mike and I and our two youngest children were ushered into an exam room. Ashleigh had started to wake up now, and the effects of the medicine she had received for the MRI had left her quite "loopy". As we waited for the doctor to come into the room, Mike decided to go make a phone call to his office.

When the doctor entered the room a few minutes later, accompanied by a young woman (nurse/assistant/whatever) Mike hadn't returned. The doctor immediately asked the young woman to take Jeremy to the children's room (playroom). She actually referred to Jeremy by name, and I remember being surprised that she remembered it. I also realized that the doctor did not want Jeremy in the room at that moment, and that realization intensified the suffocating fear that had been building in my mind and in my heart for the past several hours.

How does a doctor feel when he/she has to deliver the kind of news this doctor had to deliver to me? Did she look at Ashleigh and I and think, "they're innocent, in a moment I will tell them something that will change their lives forever."? Did she drag her feet walking down the hall, taking her time to open the door? Did she think of her own children? Or is it just routine to tell people the worst news in the world? I hope it's never just routine (wait 'til I share my story of how I received the "final blow" at Primary Children's Medical Center).

The doctor looked at me and said, "Ashleigh has a mass..." I have always believed that the word "mass" was intended to momentarily soften and prepare me for her next words, which were intended to clarify "... a tumor in her brain."

Mass? Tumor? Does it really matter which word you choose? 'cause it's a really bad thing... and the hurt to the heart feels just the same if they tell you mass, or if they tell you tumor. I don't know how a mass/tumor feels physically... but to a mother's emotions, the pain is indescribable. As I mentioned in a post (click here to read it) on my other blog... heartbreak is an actual, physical pain. I've felt it. I know.

I don't know what the doctor expected, she probably thought I would freak out... and that's why she wanted Jeremy to leave. I didn't cry. Not yet. But I must have had an expression on my face, because suddenly Mike entered the room and the first words out of his mouth were, "what's wrong?!"

The doctor was visibly startled when she saw Mike and she said, "I didn't realize that your husband was here." I'm sure that she would have rather delivered the news to us together. She spoke with us and drew a sketch showing us the location of the tumor, and she explained that we would be receiving a phone call later that day from Primary Children's Medical Center (PCMC). You see, as I mentioned previously, we had what was considered the worst medical insurance in Utah... which now had to provide the best care possible for our little 3-year-old daughter.

The four of us left the clinic together in Mike's car. He would return later with someone (maybe my dad, maybe my brother Alan, I can't remember) to retrieve the other car. The rain was still pouring down, the sky was still dark, and the tears came as we drove home to tell our boys, and our family, and our friends, about our precious Ashleigh.

Memories: Yours and Mine

This picture was taken in September 1990 (a year later it was her obituary picture); at the time Ashleigh was about half-way through her radiation therapy treatments. Doesn't she look healthy? You can tell that her left eye is crossed, but... the way she is facing does not make it look obvious. "Osh Kosh B'Gosh" was my favorite brand of clothing to dress her in, she used to call it "ko-kosh". I made the "pretty" in her hair out of balloons. I can still remember this day... we had her picture taken at JCP, then we went to Melinda Welch's home for recipe club.

I am not a big Facebook person (other than posting my blog updates), but one of the things I do like about Facebook is the old friends I have come in contact with. A couple of years ago I found a friend from Jr. High, in fact... she was my next door neighbor 7-9 grades. The last time I saw her was at her wedding in 1977. We visited back and forth (via Facebook) and I found out that she had been divorced for 18 years. I remember calculating the time frame and realizing, that she was probably going through her divorce at the same time I was losing Ashleigh. Does anyone else ever do that? When you hear about milestones, or just experiences in other peoples lives, trace back the years and remember what you were doing then? It puts the whole time-frame-thing into perspective... at least, for me it does.

I am making a request here, and I'd love it if anyone would respond. Here's a couple of ideas: If you knew us in 1990-1991, do you have any memories of Ashleigh? Do you remember how/when you heard about Ashleigh? If you didn't know us in 1990-1991, do you remember what was going on in your life during that time? I would also love to hear any memories my boys have, if they are willing to share. This blog is being made into a book, so memories/thoughts would be great! You can leave them here on this post or any other. I would really love to know who's out there... don't be shy :-)

I will be posting part 2 of "The "Worst" Day of the Rest of my Life" in a day or two.

The "Worst" Day of the Rest of my Life (part 1)

Isn't she an absolute doll!!! This picture was taken shortly before August 16. You would never know by looking at her that something was brewing. This picture is the epitome of Ashleigh; a beautiful, happy, loving, and loved child.

It was a beautiful morning. The sky was blue and there wasn't a cloud to be seen. It was August the sixteenth, nineteen hundred and ninety, a date that would change my life forever.

It was going to be another busy day for me; my mother-in-law was having surgery and I had been asked to help out at the family deli in Park City, in hers and my father-in-laws absence. I was a little nervous about leaving the kids all day long, Park City wasn't nearby, but... I really wanted to help out. I knew that Andy could take care of things and everything would be fine.

I thought about the phone call from my friend Lori the previous night, I was really being depended on to be in Park City, how could I take the time to go to the doctor? Besides... this morning there was nothing wrong with Ashleigh, she was a perfectly happy, perfectly normal 3-year-old, we didn't need to go see a doctor, but immediately after that thought, these words came clearly into my mind, "you need to take her to the doctor." Those were not my words and I have no doubt, nor will I ever, that the spirit was speaking to me at that moment.

Besides my commitment to go to work at the deli, I had other dilemmas as well. Mike had started a new job exactly six months previously, on February 16. We had new insurance, in fact, up until this point we had never even used it. The sad fact was, we had (what was considered at the time) the worst insurance in Utah. Not only was I not able to take Ashleigh to the Pediatrician that she had been going to since birth, I didn't even know what doctor she would be seeing. I briefly considered just going to our Pediatrician and paying for it myself, but quickly realized that wasn't my best (financial) option, so I made the phone call.

I had many "tender mercies" over the following year, the first one that I will mention happened on this day. When I called the clinic, I was told that the Pediatrician was only in that office one day each week, and that day happened to be Thursday. It was Thursday. I was able to schedule a time to come in, then I made my plan. Andy and Jeff would stay home together, and I would take Jeremy with me and Ashleigh. I couldn't imagine that I would be gone that long, although I did have to drive to Layton for the doctor visit. Here was another "tender mercy", my sister-in-law Bibi was in England and had generously left me her car to use (we were a one car family at the time) while she was gone.

I don't remember the exact times of the events that happened that day (it's a good thing I'm not in a court of law..."Mrs. Leger, where were you at exactly 12:42 pm on the 16th day of August 1990?"), but most importantly... I remember the events.

We arrived at our appointment and were placed in a room where we would see the doctor. When the doctor arrived she examined Ashleigh and then asked me a series of questions. I don't remember ever answering so many questions at a doctor visit before. She then observed Ashleigh as she walked down the hall, her body leaning towards the right as she had been doing for the past several days. I will be forever grateful for this wonderful doctor who was provided to me by the worst-insurance-company-in-Utah (the next summer she actually made a house call... seriously). After her exam, questions and observation she told me that I was to take Ashleigh to St. Benedict's Hospital in Ogden, she wanted Ashleigh to have an MRI (I believe this was the first time I'd ever heard of an MRI), in an attempt to be more specific, she told me, "we are going to look at her head."

What do you suppose goes through a mother's head, when someone tells her something like that? The fear that had been slowly descending on me throughout the entire time we were with the doctor, was now turning into terror. Before we left the clinic, I went to a courtesy phone and made a phone call to my brother-in-law in Park City. I explained to Tony what was happening and what the doctor had told me, "they are going to look at her head" I said, my voice was beginning to falter. "It's going to be alright" he assured me. And I was determined to believe him.

In 1990 there were no cell phones. The reason I called Tony, was so that he could inform Mike (who was on his way to PC) where I would be and what was going on. And the reason Mike was on his way to Park City, was because he was filling in for me... who was supposed to be there.

I left the clinic with my two children and headed for the hospital. My husband was born in this hospital so I knew where it was, except... when I arrived I found that it was no longer a hospital; apparently there was a new St. Benedict's on the other end of town, so we started over. I was in a borrowed car, the gas tank was almost empty, I didn't have more than a couple of dollars with me because I thought I was going to a simple doctor's appointment and would be home before lunch time. That wasn't going to happen.

We were at the hospital for a long time. Ashleigh had to be medicated (asleep) for the MRI and by the time they took her from me I was worn out physically and emotionally. As soon as Jeremy and I were left alone the anxiety of the whole day caught up with me and I was sick to my stomach. We made a mad dash for the restroom.

I have to mention here what a trooper my baby boy was. This was just nine days before Jeremy's seventh birthday, he was just a little boy. He spent the entire day with me without complaining. He must have been confused, maybe even a bit scared... certainly he must have sensed my stress. I'm sure he was hungry as well, we spent what little I had at the vending machines.

Jeremy and I spent most of our time waiting in one of the lobbies. I knew that Mike was on his way and so I waited, and waited... I watched the parking lot through the big glass doors, waiting to see his car arrive. The clear, blue skies that I woke up to that morning were beginning to get dark... a storm was on the way. It felt almost like a sign to me. When I saw Mike's car finally arrive, I ran to the door to greet him. I felt a flood of relief just having him there with me... and having his arms around me. It had started raining.

Now that Mike was there, the three of us went to the radiology department where we continued to wait for Ashleigh's MRI to be finished. I remember when we were summoned to come and get her, she was lying on a hospital table, sound asleep. There was a woman technician/radiologist there giving me instructions... of course she couldn't tell me anything, but I could see it in her eyes. She would look at Ashleigh, and then look at me, and her eyes were full of sorrow. She kept saying to me, "now you're going to take her to your doctor, right?" I assured her that I was on my way to the doctor's as soon as I left the hospital, and her sad eyes again, turned back to look at Ashleigh.

It was mid-afternoon on August 16, 1990. The sky was black and the rain poured down as the four of us left the hospital together. Jeremy rode with Mike, and Ashleigh rode with me, and we headed to Layton where the doctor was waiting for us with the MRI results.

To be continued...

August 15, 1990

This picture was taken in the springtime of 1990. Ashleigh is wearing her beautiful new Easter dress which we purchased on a fun Mommy and Ashleigh shopping day at the mall. On her head she is wearing a floral and ribbon wreath that Becky Johnson made for her. Her eye was perfectly straight... we had no idea what was ahead. Sometimes... ignorance truly is bliss.

There was a brief time (note the emphasis on the word brief) that I considered August 15, 1990 to be the last happy day of my life. Any problems that I did have, or thought I had... perhaps weren't the big problems I thought they were.

The summer was coming to a close and the first day of school was just ahead. My biggest concern was the fact that Andy was going to start Jr. high. I was struggling just a bit with that; this milestone was a big step for me, as well as for my firstborn.

I remember that August 15 was an extremely busy day. It seemed that I was rushing from one thing to the next, and the next... I was serving in my ward relief society presidency at the time and had spent the morning in a presidency meeting where Ashleigh accompanied me. There were several other things going on during the day culminating with our neighborhoods annual eat-in-the-street party that night. I remember Ashleigh seemed a little out of sorts while at the party, but then again... it had been a long and busy day, she was probably tired, and maybe her eyes were sore.

It was just two days earlier that we had seen the eye doctor and received the news that Ashleigh would need glasses. Her eye crossing inward had been such an obvious signal, but after the visit (and I remember even a few days before) we noticed that she was bumping into things, in fact, she seemed to be a bit off balance and leaned toward the right as she walked. We were sure that it was her eyesight... her glasses would be here soon and then everything would be just fine... or so we thought.

We hadn't been home from the neighborhood party for very long when the phone rang, it was my friend Lori, who happens to be a nurse, she also served in the relief society with me and had observed Ashleigh that morning at our meeting and also at the eat-in-the-street that evening. Lori called to tell me that she was concerned about Ashleigh. She told me that children who needed glasses didn't suddenly start bumping into things, that they were actually used to seeing through their eyes. She suggested that I take Ashleigh to see her pediatrician. She expressed some concern about calling me, but told me that she loved both me and Ashleigh and felt that she needed to call. I thanked Lori and told her that I would call the doctor in the morning, when I hung up the phone... Ashleigh threw up.

Yes... there was a brief time that I thought August 15, 1990 was the last happy day of my life (probably because August 16, 1990 was the worst day of my life, with a few more "worst" days ahead), but in reality... August 15 was really just the last day of a part of my innocence... the day before I was "awakened" in a way, to the harsh realities that can come to us in this life, and in my case... every parents worst nightmare.

The Summer of 1990

The summer of 1990 got off to a great start with a brief trip to Northern California to visit extended family. Uncle Derek and Auntie Dorothy were visiting from England and were there with us. We had a memorable trip to Whiskey Town Lake where the boys played with 2nd cousins and we sailed in Uncle John's sailboat, we had jet ski rides and Mike and Uncle Derek swam across the lake to an island (they seriously did) and then back.

Back at home we purchased a family pass for the local swimming pool, the kids played with friends, we had bbq's, dutch oven cookouts, family gatherings... life was good. Nothing seemed to be to out of the ordinary while we were living in the moment, but by the end of the summer as I looked back, I could recognize the symptoms that had slowly appeared as the summer months advanced.

For example, one day while enjoying an afternoon at the pool, Ashleigh suddenly threw up on the deck. She wasn't sick; there was absolutely no explanation why she did that. She also had a few uncharacteristic moments of bad temper. I remember one evening in particular, Mike had to drive to Logan for a late night "store set" and wanted me to go with him for the ride. Andy had become a reliable baby-sitter, so we knew we could put Ashleigh to bed and the boys would be fine. But she knew we were leaving and she had a tantrum of sorts. We couldn't figure it out... it wasn't like her at all. But perhaps the biggest thing that caught our attention happened in August, when one day her left eye began to turn inward.

I was immediately concerned, you see... I have worn glasses since before my second birthday. I had experienced the "four-eyes" and the "big-eyes" name calling throughout my elementary school years and this was not on my agenda for my daughter. We scheduled an appointment with the eye doctor for Monday, August 13.

Mike and I took Ashleigh to the eye Doctor that day, and upon examination the Doctor determined that she would need glasses. I was sitting in the chair and Ashleigh was sitting on my lap throughout the exam. When he made the diagnosis I immediately felt the emotion rising to the surface, and I knew that I needed to get out of there... fast. But it wasn't fast enough. I was humiliated and ashamed that I hadn't been able to hold back the tears. As we drove home I asked Mike to take me to my mother's, I knew that my mom would understand exactly how I felt, after all, she had experienced the same thing with me.

I remember walking up the stairs to my moms living room and into her arms, where I sobbed out my sorrow that Ashleigh was going to have to wear glasses. Of course my mom talked me through it with a smile and a positive outlook, but it was what she said as I left that left a profound impact on me... she hugged me tight and spoke softly into my ear, "I'm just grateful that it's not something worse."

Three days later... it was much, much worse.

The Bracelet

Today is my granddaughter Jane's first birthday... this post is written especially for her, but anyone else that would like to, is welcome to read it.

In June of 1979, my dad went home to England for the first time since he'd come to America in June of 1962. At the time I was expecting my second baby... Jane's daddy. My mother had asked dad if he would buy a silver baby bracelet, or bangle as the British called it, just in case the baby was a girl. Dad fulfilled moms wishes and brought home a beautiful little bracelet... when my baby boy, Jeffrey, arrived in November, the little silver bracelet was tucked away for safe keeping.

Nearly four years after Jeffrey was born, my third son Jeremy was born, and the bracelet was still kept tucked away for another day.

There where more trips to Britain and more bracelets purchased for other baby girls, but still... my baby girls bracelet was safely kept.

At some point during the years between Jeff's and Jeremy's births, I started to pray for a baby girl. It wasn't in every single prayer, every single day... I just started to mention it. Some time after Jeremy was born, it became more frequent. I was only planning to have one more baby, so as I prayed I gave the Lord some very good reasons why he should send me a daughter. Now, I have to say right here that I.LOVE.MY.SONS but I also wanted the joy of raising a daughter. When I discovered that I was pregnant with my fourth child, I stopped praying for a girl, now I would have to wait and see.

A few months before the birth of the baby, my mother unexpectedly gave me the bracelet. I was caught off guard and it was kind of emotional for me. I took the bracelet home and placed it in a significant spot on my dresser, where it remained until the babies birth.

The night before I was to be induced, I took the bracelet and tucked it safely away. I explained to Mike that if the baby was a girl he was to bring it to the hospital, but if the baby was a boy... the bracelet would remain tucked away.

I will share the story of Ashleigh's birth in another post... but we all know that I took a beautiful baby girl, wearing a silver bracelet on her wrist, home from the hospital. She wore that bracelet almost every day until she grew out of it.

I have kept this bracelet safely tucked away for twenty-three years. I made a decision several years ago, that the bracelet would go to a granddaughter named after Ashleigh. Which brings me to August 2, 2010.

We knew that Jeff and Melissa were going to have a baby girl. They had two names picked out for quite some time, and not long before the birth, they had added a third name. I saw the baby within an hour after her birth, and they were back to the two original names and were un-decided.

I took Miss Avery home with me, and as soon as Mike got home from work we headed back to the hospital to see mommy and sister (as Avery calls her). I called Jeff to ask him what Melissa's room number was and he said, "do you want to know the baby's name?" Of course I did. He simply said, "Jane Ashleigh." I was speechless, in fact, when I finally did speak I said a dorky thing... "I haven't heard that one before." Meaning of course, that they had never mentioned it, and that is because the inspiration came to them after Jane was born. When I got off the phone and I told Mike the babies name... we cried all the way to the hospital.

It's a funny thing, that little silver bracelet. All those years, looking at it, tucking it away, wishing and hoping... and praying (I think it's interesting that the bracelet now belongs to the daughter of the baby it was originally intended for). It really is just a thing... but to me it is a symbol of a righteous desire of my heart, something I had fervently asked for, and that prayer was answered in the way I wanted, and I know it beyond any doubt.

Last year on Jane Ashleigh's blessing day, she was beautiful, dressed in the sweetest white dress with flecks of silver... and on her tiny wrist was the bracelet. My heart was overcome with emotion as I saw it. After she was given her name and a blessing, Melissa turned to me and placed Jane in my arms; as I held her my heart was filled with joy and gratitude... for this beautiful baby girl, and answers to prayers.

Ashleigh Ann

Jane Ashleigh

Why I Am Doing This

It is nearly 3 1/2 years since I joined the world of blogging. It is something that I have enjoyed doing since the beginning. I love to write and to see my results instantly in a finished format... complete with pictures. It has been a fun way for me to document what I do, and also what we do as a family. I have already published one blog book and plan to publish more.

One day, about 3 months into my blogging life, my son called me and told me of a tragic accident that had happened to some friends of friends. He told me that I could connect to their blog through his friends blog, so I did. I became riveted to the story of the Jackson family and their little daughter Lucy, who choked on a piece of apple and passed away a few days later.

It's amazing how fast the "family tree" of blogging can grow. You read someones blog, you read the comments people leave, you click on the name of the person who left the comment, and suddenly you're reading their blog... it can go on, and on, and on. In just a short matter of time I had found several blogs written by parents whose children had died. I'll be honest... I was shocked at how much heartbreak is going on all around us.

But for some reason I was drawn to these stories. As I read, I thought to myself, would I have liked to have had an outlet such as blogging when I was going through the experience of losing a child? I think I would have. Through my reading I also experienced regret. Regret that I hadn't faithfully written a journal during that time. But my goodness, for over a year I was living life on a day to day basis, sometimes minute to minute, and at times just trying to endure and endure it well. Journaling probably crossed my mind... and went right on by.

During the last several weeks of Ashleigh's life, realizing that I hadn't been good at documenting, I created a video journal. The entire video is of Ashleigh lying on her bed, being fed, being read to, being loved and served by family and friends. During the taping I was sitting off camera (I didn't want to be seen) sharing everything that I could think of about the year and Ashleigh. Now, twenty years after I started that video journal, I am not sure that I've ever watched it in its entirety. My purpose at the time was to do it for my sons, so that they wouldn't forget. So that they would see how they served their sister. I'm sure I will be watching the video as I write this blog.

I don't follow all the blogs I mentioned previously. Time and blog stalking are two words that don't really compliment each other. However, I do keep up with the Jackson family blog (I've actually met them).

So long story short (and who has ever known me to tell a short story?), after much contemplation I came to the decision to tell Ashleigh's and our story. It will not be in chronological order... but I will write as the memories flood into my mind. It will become a blog book that I hope will be read in my family for generations to come. Because she was here... and I don't ever want her to be forgotten.

All The World Will Never, Never Know...

We went to the beach house in the summer of 1989. On our first few trips to the beach my Uncle Joe and his family were our "beach house neighbors", on that particular trip my Uncle Roy and his family joined us as well.

Five-year-old Jeremy became an instant admirer of his Great-Uncle Roy, and so did two-year-old Ashleigh, because... whatever or whomever Jeremy admired, Ashleigh also admired, because she deeply loved and admired Jeremy. I'm pretty confident that both of these children captured their Great-Uncle Roy's heart as well.

It was during that trip that Uncle Roy sang a little song from his childhood to Ashleigh as we sat on the beach together. Little did we know at the time that it would become her "theme song" of sorts, and although it had been sung to children for decades before her birth, it was almost as if it had been written... just for her.

Uncle Roy is gone now, but I hope that somehow he knows how significant that little song was (and still is) to us, and how grateful I am that he sang it to her. It has a sweet little tune and these are words:

A is for apple
B for bear
C is for Ashleigh on a chair
All the world will never, never, know
the love I have for my Ashleigh-O
my Ashleigh-O
my Ashleigh-O
the love I have for my Ashleigh-O

From that day forward her nickname was Ashleigh-O. This blog is all about Ashleigh, how she came to be, and how she still is... and how the world will never, never know the love I still have for my Ashleigh-O.