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.

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.