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.