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.

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."

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.