sarah joy

Acknowledgments

One of the hardest parts about completing Sarah Joy's Story was realizing all the people who didn't get mentioned, yet who were a significant part of her life. Because her story is told only from my perspective, so many go unrecognized. I think of our neighbors, the Bakers, who lost their son, James, just three years ago, and who can truly relate to our grief. The LaCroix family were "in the picture" from the time of Sarah's infancy and a big part of her life. I think of Chuck the Clown, (Janice Carty), from New Beginnings, who was another favorite of Sarah's. Penny, the bus driver, was someone who, for a short time, touched Sarah's life and ours. Relatives on her daddy's side of the family and on her momma's side were all truly important to Sarah, as well as so many from her church family at Victory World Outreach Center. It is to all of you, that I extend my apologies and my hope that you will be blessed just in having known Sarah Joy.

Sarah Joy Welch, 1994-2000

Sarah Joy's Story: as told by Granny

Many who knew Jesus were impelled to write about him. Matthew, who was a disciple, wrote the gospel of Matthew. Mark, a close follower, but not one of the Twelve, wrote the gospel of Mark. Luke, a physician, and one who accompanied Paul in some of Paul's early missionary journeys, wrote the gospel of Luke and the book of Acts. He searched out the story for himself and recorded it, actually addressing it to only one person, Theophilus (if Sarah Joy's story speaks to only one, it will be enough). Peter, a close disciple of Jesus, wrote two letters to the early churches, and Jesus' earthly brothers, James and Jude, wrote letters as well. John, who felt especially close to Jesus, wrote the gospel of John, three letters to the churches, and the last book of the Bible, the Revelation of Jesus Christ.

At the end of the gospel of John, John writes,

"Jesus did many other things as well, If every one of
them were written down, I suppose that even the whole world would not have room for the books that would be written."

This expresses what I feel about the experience of having the gift of Sarah Joy in my life for six years -- no number of books could touch the depth of what she meant to me, her granny, or the other people whose lives she touched. Because of this, I have wondered why I am even attempting one story. Part of the reason is that she was the one who prompted the writing of my story, "Joyride of the 90's" -- just a short summary of how I came out of darkness into light (you will find a copy of that small tract tucked into the pages of Sarah Joy's Story). It seemed only right that I complete her story, which was begun in my testimony.

An issue I want to address is that, even though I am centering my attention on the gift, Sarah Joy, I acknowledge fully, the Giver of the gift, and indeed, it is the Giver Who is to be exalted and thanked for the precious moments we were given with such a marvelous one of His creation. It is only because I know she has returned to her Maker and is safely in His care that I can, even in her absence, walk in peace and be filled with joy -- the same joy that little Sarah brought into our lives while she was with us.

I have had many good things in my life -- all gifts from God -- the family I was born into; Tom, my husband, who is the person closest to me; our children, Anne and Sarah K.; our remaining grandchildren; and many dear relatives and friends. However, it is Sarah Joy who the Lord has used to prompt me to write. I see now the many ways in which He can use even one, seemingly insignificant life to bless countless others. Some would be remembered for their splendid achievements or some ways in which they towered above others. I learned well through Sarah Joy that our importance to God is simply in who we are, not what we accomplish, or how advanced we are in comparison to others. I have learned this truth in a way in which my life will never be the same. I will spend the rest of my days letting God perfect who I am -- making me more into the image of His Son. Like Sarah Joy, I want to be moldable, trusting, and filled with joy, -- appreciating the many tiny things that make up each day. I also want to be like Sarah Joy in being in no hurry, yet oddly, at the same time, wanting to know, "Where we going next?"

The Lord is always going somewhere new and we must have a mind set to follow. I can only imagine the thrill Sarah Joy must have felt when the Lord, Himself, called her, on the morning of her departure to an experience far beyond anything she had had a chance to experience in her restricted physical life here on earth.

Sarah Joy was just two months old when I wrote my testimony. It was completed and printed the day she turned three months old. I had titled it, “Joyride of the 90's”, because I was experiencing a brand new joy in my life, and just like the intensity I am feeling now, I wanted to capture it in some way. I remember thinking last year as the year 2000 was approaching, "I ought to write Sarah Joy's story", because when I wrote mine, Sarah had not yet entered into what was to be a five year fiery trial. The new year came, I still had done nothing -- it was her death that literally bound me to not letting the value of her life go unexpressed.

At Sarah Joy's funeral a friend of Anne's spoke something that was so fitting. She said, "That little stinker, she slipped into our lives without any of us being ready, and she slipped out of our lives without any of us being ready." Though not premature, Sarah arrived on May 9, 1994, about two weeks before that "sacred due date". A call came to the house shortly after 7:30 in the morning. Anne said she thought she was in labor and had called the midwife. She still needed a few things for the home birth and asked if I could bring them with me. With the items she needed, I was ready to leave our house in record time, but before leaving, I went in to tell Great Grandma Tucker (a.k.a. "Tucker" by the grandchildren) that Anne had called, and I asked her to get on her knees and not get up until she got the call that the baby had arrived safely. I, myself, prayed for the entire ten minute drive.

I remember walking into the trailer that morning and being ministered to by the peace in the room. Soft praise music was playing, Anne was rocking with a pillow in her lap to squeeze, and Luke had that wonderful look of expectancy on his face. I had been at the house no more than ten minutes when Anne said she thought she better go to the bedroom. The bed still had not been prepared for the delivery, so Luke and I tried to make up the bed and minister to Anne each time a contraction came. When we managed to get Anne into the bed, little Sarah's head had already crowned. Luke was holding Anne's shoulders and calmly suggested I hold the baby's head (the obvious often does not occur to me in tense moments). Sarah Joy was fully delivered in seconds. Though the midwife, Eileen, had missed the moment of birth, she was most welcomed when she arrived about five minutes later. She checked carefully to see that all was well with the baby and with Mama. There was still much to do in the hours that followed the birth. All went well. Sarah Joy was beautiful, with a head full of thick, black hair, which she never lost until surgery three years later.

Sarah Joy was a prayed-for baby; dedicated to the Lord even before she was born. She was our first child's, first child; our first grandchild; our youngest child, Sarah Katherine's, first niece (and her very own namesake). On her daddy's side there were equally eager grandparents, aunts, uncles, and in that family, even cousins. Little Sarah was born into a world of welcoming love.

The first days, weeks, and months were typical. Adjusting to a new little life has many challenges, especially for the parents. I treasured Mondays, when Anne would come to do laundry and spend several hours with us. Luke would join us after work, and we would share the evening meal together. This once a week gathering became a blessed tradition and remains to this day. It is now a chance to remember and keep alive, at least in conversation, our dear little one. Sarah Joy developed normally the first several months. She was alert and responsive, showing signs of what looked to me like an early sense of humor -- laughing from the belly at things that looked incongruous to her. She rolled over and sat up in the normal time range. The first sign of somewhat delayed development was when she didn't creep or crawl at the expected times. It was easy to dismiss, because at eight and nine months she could roll to wherever she wanted to get, and I remembered reading that many babies are mobile in "unorthodox" ways. Luke and Anne detected early hand preference -- something we didn't know at the time to be abnormal. All in all, though, things seemed normal and good.

Early in the morning, on March 18, 1995, when Sarah was ten months, Luke and Anne were awakened to an unusual cry in the night. When Anne went to Sarah's room and picked her up, she was convulsing. Anne thought she was choking. They called for an ambulance, then called Luke's folks and us. I remember getting the call, close to 2:00 in the morning. Anne said, "Sarah is breathing now, but something is very wrong. The ambulance is here, just pray." I told Tom, then got out of bed and went to the living room to pray. I found I couldn't pray -- I felt empty of faith. I just sat there. Tom came out and said, "Let's go to the hospital." It hadn't even occurred to me that we could do that. We dressed and watched out our kitchen window for the ambulance to go by. It did go by within minutes, and we followed it to the emergency room. When we got into the room where Sarah was taken, she was having a seizure -- it was now clear that that was what was happening when Anne found her. She had had others on the way to the hospital. She was put on Dilantin by IV and observed for the remainder of the night. During that long night, Pastor Keith from New Beginnings came up, as well as Grandpa and Grandma Welch and Pastor Gillim from their church. Sarah had no more seizures, so was allowed to go home the next morning. I remember thinking, at that point, that perhaps the seizures were from an undetected fever or something else just as innocuous -- surely not anything of major concern.

Sarah remained on oral doses of Dilantin but over the next several days had mild seizures when falling asleep and waking up. Later that month, Luke and Anne took her to a neurologist in Flint. She was given an EEG and some other in-office tests. The doctor's diagnosis was a seizure disorder (epilepsy) of partial complex seizures, meaning the seizures were originating from specific locations in one side of the brain. His prognosis was not encouraging. Luke, Anne, and Sarah Joy came to the house for supper that night. I knew Anne was heavy laden. After supper she asked to go downstairs to talk. I remember little Sarah sitting on my lap so innocent (and still so beautiful) -- Anne started to tell me what the doctor had said, and she broke down sobbing. A type of death took place for Anne that day -- the bubble of perfection had burst. The days and years ahead meant learning how to adjust to the loss that had already taken place. In adjusting to this "death", Luke and Anne learned over the next five years how to hold Sarah Joy with an open hand. At her death, they were more able to release the beautiful butterfly that had emerged from the chrysalis (they chose to have the etching of a butterfly on her head stone and the words, "Butterfly from Heaven, we held you with an open hand"). For us, as grandparents, it was a little different; not quite the same sense of loss, but rather a deepened sense of caring.

Then began the roller coaster ride of meds. All meds, with the exception of one or two, worked initially. When introduced to a new med, Sarah would be seizure-free for four to six weeks, then the seizures would begin again, increasing in number at night and nap time, and eventually spilling over into the day time. After two years of med increases and changes, and no changes in the seizure pattern, Luke and Anne decided to try Sarah Joy on the Ketogenic diet which has proven effective for about one third of the people who have tried it. Sarah was on the diet for one full year. Anne followed the diet meticulously, measuring her food and water intake to the nearest one tenth of a gram -- a requirement of the diet. Sarah was seizure free when she started on the diet, because she had just started on another new med, Depakote. Actually, the first doctor in Flint had recommended this med for Sarah at ten months, but even the pharmacist said it was not recommended for children under two. At that time, the decision was made to wait on the use of that medication. Now, at two, Sarah was on the Depakote, other adjunctive meds, and the Ketogenic diet. Still, in the usual amount of time the seizures began again.

The year on the diet was a challenge in itself. An initial three-day stay at Children's Hospital was required, because the diet started with a three-day fast, to put the body in ketosis. The diet was strictly designed to keep the body in that state. A new sibling, Elizabeth Grace, had joined the family earlier in the year, so our journey to the hospital took some planning. I remember the day we checked into the hospital. We had to maneuver Sarah, the baby, our luggage, a port-a-crib and all the paraphernalia that was needed for three days. What a God-sent blessing the Ronald McDonald House is to families who need a place to stay while their child is in the hospital. There was some foreshadowing ten years before when Pastor Keith and Judy were at this same hospital with their youngest son, Josiah. I was profoundly impressed with the Ronald McDonald House at that time, never dreaming that it would become such a frequent part of our lives ten years later.

Anne and I took turns with the girls -- giving one another a chance to rest when possible. At two and a half, Sarah was so accepting of all things. She took the frequent pokes and never even questioned why she wasn't eating. When the diet was introduced gradually, she put up no fuss, though there were a few times over the next year that she did balk at some of the options. The three-day stay in the hospital was also a training time for Anne in preparation of the foods on the diet. What Anne had to learn, and the discipline required to carry it all out, was as much worthy of any college course that I ever took.

It was good to go home, but the many challenges the diet introduced lay ahead. Sarah had to be served her own food items and her own portions. She never inquired why she was singled out (I'm not sure if it occurred to her). To be sensitive to her, we no longer set food on the table, but prepared our plates before coming to the table. It was a good discipline for us, because during that time we were cautious about our eating habits, being careful not to eat snacks or extras in front of her.

Looking back, I believe Sarah's complete compliance may have been because of depression -- she had no way to fight back and simply resigned herself to whatever came her way. Thankfully, it was loving people doing what was believed to be the right thing for her, or it all could have been irreparably destructive. It was during this time that Sarah Joy took hold of a "Someday" box. She could have no sweets (something little ones usually treasure). Occasionally, when an unknowing person would offer her a sucker or piece of candy, we would have her put it in the Someday box. She would hold the box, open the lid, feel the candy, and we would tell her, "Someday you can have a cookie, someday you can eat candy, someday you'll not have seizures." She, amazingly, would be satisfied. She would let us put the lid back on and she would go on to something else.

When it became evident that the diet wasn't working for her, the possibility of surgery to remove the portion or portions of the brain where the seizures were originating was explored. A series of tests were begun by her neurologist, Dr. Betty Koo, and that meant more time in the hospital. Amazingly, Sarah liked these times and took absolutely everything in stride. The tests determined that she was a candidate for surgery (not all are), so she was scheduled for surgery in October, 1997.

Again, the entire family moved to Ronald McDonald House to move through the necessary next steps. This was a very intense time, but we had prayed and were all in agreement that this was the next best step for Sarah. During her bad times she would have over a hundred seizures a day -- most occurring at night and nap time, but even the days were bad when she was at her worst. As hard as it was to choose surgery, to do nothing was worse.

               There was a good possibility that when the hot spots were removed, she could be seizure free, or at least much improved. She was scheduled for two surgeries. The first was to determine what, if any, portions of the brain could safely be removed, and the second, a week later, was to actually remove that portion. The first surgery was to place a grid of electrodes on the brain in order to locate and map precisely where the seizures were originating. This first intrusion was probably as bad, if not worse, than the surgery for the removal of tissue. On the day of this first surgery she was still in intensive care. She was being observed closely while coming out of the anesthetic. Only two people could be with her at a time. It was my turn to go in for ten minutes -- Luke was there with her. She was groggy, but knew I had come into the room. I tried to think of something comforting to say to her, but when she looked up at me and said, "someday..." Tears flooded my eyes. How could this three-year-old, going through so much, say something so significant? I dried my eyes to kiss her and simply receive from her, instead of trying to do what I could not -- remove her burden (which, by the way, she never recognized. She never knew any different, and I believe Jesus was carrying it for her).

                Over the next couple days she had considerable swelling in the face, which we were told was normal. At three years of age she was speaking mainly in single words and several (always appropriate) phrases. Though limited, she managed to communicate. Even simple things often came across as profound. This was one of the many joys that would come frequently when in her presence. That particular Saturday afternoon, she kept us amused, even laughing, at the comments she would make while lying in bed, not able to do anything or see anything. One of her comments was a request to pray for her toe, because there was a little monitor attached which evidently she could feel, but how insignificant in comparison to the major trauma she had just been through! Never once did we hear a word of complaint or a question about what was going on or why. She had absolute trust in the people who loved her, and whom she loved (Oh Lord, work that quality into me). She asked to have Aunt Sarah bring her guitar. Aunt Sarah lovingly did so, but found it almost impossible to play, because of being choked up with tears. Just hearing the guitar was enough for little Sarah -- she was pleased. Just one day short of a week later, Dr. Koo had to do a series of difficult and intense tests to map the seizure activity. Sarah had been hooked to a monitor the entire week to record seizure activity, but the anesthetic had actually quieted things for a few days, so it was critical to get the needed information for the surgery, which was to be the next day. Dr. Koo had told Anne she would get back with her and Luke later in the day. The evening came, Aunt Linda came down with Elizabeth. It seemed good to all of us that Luke and Anne take a break and go with Elizabeth to the service at their own church that evening. Sarah Joy had to have a transfusion that evening (her blood count was too low for surgery) which would take quite some time, but Grandpa and Grandma Welch were there as well as Tom and myself, and we felt that having four of us sit with her would be fine. With hindsight we know that wasn't a good decision. One of the parents should have been there in the hospital or readily available at any time.

                During the evening we sat with Sarah and had a chance to visit as concerned parents and grandparents. Like everything else, Sarah was totally cooperative with the transfusion process. At one point she looked up at each of us as she was resting quietly and said, "I love you, Papa, -- I love you, Granny, -- I love you, Papa, -- I love you, Granny. There wasn't one of us that wasn't choked up. She had such a marvelous way to bring delight into the most unexpected moments.

                Dr. Koo came in during the evening to share the results of the tests with Luke and Anne and to lay out the plan of the surgery for the next day. We tried to reach the kids on their cell phone, but were awhile getting through. Dr. Koo stopped in later in the evening (the kids would have been on their way back) and said it was important for her to get home and get some sleep. She was frustrated because she had wanted everything to go as smoothly as possible and for the parents to be properly informed. As it turned out, the tests had shown seizures originating in one area that could be removed, but there were also "hot spots" in the speech and motor areas, and those could not be safely removed. The doctor's hope was, at this point, that the removal of even one hot spot might allow the medications to be effective.

                When the kids arrived back at the hospital, all the traps for spiritual warfare were set. Luke felt upset that Anne hadn't mentioned Dr. Koo expecting to see them. Anne hadn't realized it was a definite commitment, and when evening came she didn't expect to see Dr. Koo again until morning. I knew both Luke and Anne were upset, I knew Dr. Koo was upset. When we went back to Ronald McDonald House to "sleep" I was deeply burdened. I remember writing in my journal for the Lord to do the impossible -- I didn't even know what needed to be done.

In the morning I had breakfast with Anne before walking to the hospital to relieve Luke and Tom. It was possible Sarah would need another transfusion before surgery, so that would need to be done early in the morning. As Anne and I sat side by side, I told her I had prayed for the situation. She then told me what had taken place between her and Luke after we had left the hospital. It was the answer to my prayer. The enemy had been completely disarmed. Luke and Anne had been able to truly hear one another, to forgive, and then to reach out to ask forgiveness of Dr. Koo for any difficulty they had unintentionally caused her. Anne had written a note and planned to give it to her at the appropriate time.

Anne and I finished our breakfast and headed to the hospital. It was still dark. My burden was totally lifted, and as the rainbow on the front of the hospital came into view (Sarah Joy always called it the Rainbow Hospital), I told Anne I felt like we were ready for surgery. She said she felt like we had already had surgery. I stopped and took a picture of Anne in front of the hospital with the rainbow in the background. It is too dark to even see Anne, but that picture, to this day, represents one of the many victories the Lord brought us in the years of challenges with little Sarah. When we got into Sarah's room, her blood count was up enough that she did not need another transfusion. Luke and Anne were able to see Dr. Koo briefly just before surgery -- that meeting went well, as did the surgery by Dr. Alexa Canady.

The next few days in the hospital went smoothly. The swelling from the second surgery was not quite as bad, but there was still a day she could barely see. For years, Sarah had been strongly attracted to Pastor Keith and Judy. The attraction actually started out as fear, but turned to devotion when the fear was overcome. All during the week, after the surgery, she asked for them. They came to see her the day after the second surgery. They brought her a sucker, and she held on to it dearly. I asked her if she wanted her picture taken with Pastor Keith and Judy with her holding her sucker. She said she did and that picture was one of her favorites. In addition to the snapshots, we took videos during our stay at the hospital. These became routine viewing for her.

One "someday" actually came shortly after the surgery. It was decided to discontinue the diet, because of its ineffectiveness, so by the end of November, Sarah had no more real food restrictions. For a few months she couldn't get her fill of a few things. Surprisingly, it wasn't sweets. She had almost no taste for them by now. After depriving her for an entire year, it was hard to deprive her again, even when we knew she had had enough to eat. One of the first things we noticed coming back when the diet ended was her smile and her overall cheerful disposition. She rounded out for a few months (though it didn't last long), she began to grow back her hair, and continued to find novel ways to worm herself deeper and deeper into our hearts.

In less than two weeks at least minor seizures were apparent. This was a letdown to the hopes that had been placed in the surgery, but we still had confidence that our hope in the Lord was not in vain.

In the month following the surgery, the Lord showered us with a blessing. He arranged something that it never even occurred to me to dream for -- planting Luke, Anne, and the children in the home right next door. He brought this about with three closings in the month of November. The Catholic Church had wanted to buy our duplex in Lapeer for quite some time in order to enlarge their parking lot. We had been uninterested in selling, because we wanted the apartment to remain available as a stepping stone for Luke and Anne in being able to purchase their first home. But when the house next to us came up for sale, through a series of incredible incidents, we asked the Catholic Church (which had contacted us again) for the same amount the family was asking for the house next door. They accepted, without hesitation. The Catholic Church and probate court took care of all the legal matters -- we just had to show up to sign the final papers. The kids put their trailer up for sale and it sold before the end of November. They were now free to purchase the house from us. There hasn't been a day in these three years that I haven't realized what a miracle it was that God brought all these circumstances together with perfect timing -- and at a time when it felt like we were being defeated, because of Sarah Joy's continued seizures. I am truly thankful for the goodness He has continually shown toward us. The kids moved into the house on December 28, 1997. A precious new little one was on its way, and it was wonderful being close enough to help out when needed. Sarah Joy did not bounce right back. Dr. Koo was concerned when Sarah was not walking on her own yet, one month after surgery. From that time on, she did have a more exaggerated weakness on her right side. It is not that surgery caused this weakness, it was already present before, but as she got older it was more pronounced, especially when she was going through a difficult time.

As an infant, Sarah had shown fear toward a few things. The fear was mainly toward things that seemed odd, like a chair tipped upside down, or the hood of a car when it was raised. She also was frightened of clowns or anyone dressed up in a costume. In an attempt to dispel one of her fears, Papa and I used every opportunity to familiarize her with clowns -- books, videos, circuses, etc. In time, she did come to love and embrace these very things she started out to fear. In April, Dusty the Clown, from church, came for a special Saturday morning breakfast at a restaurant in town. Papa and I took Sarah Joy and Elizabeth for breakfast and to spend some time with Dusty. Sarah Joy was completely enamored. She sat beside him or on his lap most of the morning. We took pictures and video taped much of the time spent there that morning. Sarah would ask to watch it over and over. She never lost her fondness for clowns and for Dusty in particular. Mike was Dusty to Sarah even when he did not have on his clown costume and makeup. She had a couple of clown costumes herself and loved to dress up in them and go to the hospital or a nursing home and just spend time meeting people, often asking them if they wanted to pray. She was a ray of sunshine wherever she went. Also that spring a new little brother arrived. Instead of the ten minute drive, I simply had to walk next door. Eileen, who had been the midwife for Sarah Joy and Elizabeth also was present for Levi Immanuel. Levi was the first (but not the last) baby to be born in the new home. This was a happy time for everyone. Sarah Joy was cheerful, improving, and bringing joy to all of us.

Partially because of the need for therapy it was decided for Sarah to attend the preprimary impaired classroom at Woodside School in the fall of 1998. She got to ride the school bus, and that was a big deal! She was only four years old, but she displayed no reluctance to getting on the bus that first morning. This was just another example of how trusting she was, in spite of all she had been through. At school she got physical therapy, speech therapy, occupational therapy, as well as classroom time to socialize with some of her peers. Sarah loved people and this experience did give her an opportunity to connect with a lot of different people -- the therapists, the teachers, aides, bus drivers, classmates, and other personnel at the school. One of the personnel was her cherished Papa. Papa had to actually be a bit careful about when and where he would show up in Sarah's presence while he was working at Woodside School, because she always wanted to go with him. Incredibly, she remembered and correctly pronounced most names that many children her age and older would have difficulty with. She would talk regularly of Mrs. Lawrence, Mrs. Atwell, Mr. Mocniak ("Mocmiak"), and others.

In February, 1999, the grandchildren came down with chickenpox -- Levi first, then Elizabeth and Sarah Joy two weeks later. In less than a week from breaking out, Sarah had become listless. Her face was swollen and she was running a fever. She was hard to arouse, even for water. Luke came home early from work. He and Anne took her into emergency. She was taken from Lapeer to Hurley in Flint. It was found that she had a strep infection in the blood. I remember going to the hospital the next day early in the evening. She was sitting up and eating mashed potatoes and gravy (an all-time favorite). What a beautiful sight! It was the first that she had awaken in nearly two days. She remained in the hospital for several days. When she returned home she was not able to go back to school for over a week, and even then, it took some time for her to get her full strength back.

Just as she seemed to get back to what was "normal" for her, she started another downward spiral of increasing seizures, having a very difficult time in June of 1999. Papa and Anne took her to the emergency room at Children's where they started her on Dilantin by IV (she was now on four anti-epileptic medications). She was still having a difficult time when they got back home, but she stabilized again over the next several days. She was doing well again by the time we went to Virginia Beach for a family reunion. All of Great Grandma Tucker's descendants were able to come, as well as Grandma Tucker's sister, Margaret, her niece, Peggy, and nephew Bob with his wife Sharen and grandson, Sam. There were 39 in all. How special that we could all be together, for since that time, both Great Aunt Margaret at 90, and Sarah Joy at 6, have gone from us. No one traveled any better than Sarah. She loved to go -- anywhere and at anytime. Her most repeated line was, "Where we going?"

Another very difficult time came for Sarah in October. Those times left her noticeably weaker and often with a mouthful of sores from biting her cheeks and tongue during seizures. She never said, "My mouth hurts." She would simply avoid eating and say, "All done," when she had barely begun.

Nothing really helped the sores except getting the seizures under control. Another medication adjustment brought them under control again. By November (just a year ago at this time) she began what was to be the best six months that she was to have -- still one or two seizures a night, or at any time she slept, but that came to seem tolerable because it was so much better than the bad times.

In December, just three days after Christmas, another blessed grandson, Judah Victor, was added to the family tree. The three older children slept through the middle of the night's commotion. Each one was able to greet the new brother as they awoke in the morning. Elizabeth first, then Levi, and Sarah Joy (an hour or so later). How precious to have the videos that show their welcoming responses to their new little sibling. The next day both sets of grandparents were at the house to see the new baby. At first Sarah Joy and Elizabeth were going to go with Grandpa and Grandma Welch. When we got ready to leave, Sarah wanted to go with us, then almost immediately she changed her mind and wanted to go with the Welches. She was truly torn and was troubled to have to make a decision. There was no good way to help her. We got up to leave and offered for her to come with us , if she wanted, or to wait and go with Grandpa and Grandma Welch in a few minutes. She came with us -- I'm sure only because we were the first to go. There were a few other times she had a hard time making a decision, but that one, I think, was one of the more painful.

During the month of January, Sarah reached a milestone. She chose to tell when she needed to use the bathroom. When Sarah was at the stage that one would generally start to potty train, she was going on the rigid Ketogenic diet and then surgery -- potty training was the farthest thing from anyone's mind. Later she had some successes when she was put on the potty, but she never initiated using the potty herself. One reason, I'm sure, is because she couldn't manage her clothing without help. During this time in January, Sarah had mentioned wanting to go to Chuck E Cheese's. Anne picked up on that and made a chart in the shape of a piece of pizza and told Sarah that she could earn "toppings" to put on the pizza by telling someone she needed to use the bathroom. When she got ten toppings, she could go to Chuck E Cheese's. Sarah didn't have even one accident from that point on, unless it was during sleep or a seizure. What a happy little girl she was the night we all met at Chuck E Cheese's in Rochester! Even Aunt Sarah joined us in the celebration.

Sarah had an appointment with Dr. Koo in January. She was doing pretty well at the time, though bedtime and nap time seizures had begun to increase at that time. Dr. Koo seemed pretty impressed with Sarah's progress in verbal expression and laughed when Sarah asked her if she went to church.

Also in January, Sarah went with Anne to Brother Hovis' funeral and to a memorial service for Uncle Clayton with Papa and Granny. She loved church services and loved spending time with people at any occasion. It was around this time that we made a visit to see Evelyn Greenhoe, a distant relative of Tom's who, along with her husband, had been instrumental in working with Tom on the Greenhoe family history. Evelyn had been in a nursing home for some time, and Sarah Joy loved to join us in any visits we would make. On this particular visit in January, we placed Sarah right on the bed with Evelyn. Sarah laid down beside her and didn't want to get up when it was time to go home. I don't know who was more pleased -- her or Evelyn. That was one of the last times that they saw one another alive, for Evelyn died just two days before Sarah Joy. Another nursing home visit that seemed just ordinary at the time was when Sarah went with me to Suncrest here in town to visit the sister of Gloria Goemaere, who had been attending our church for several months. Gloria's sister, Evangeline, had been through some tragic circumstances and was at Suncrest the last few months of her life. I told Sarah who it was that we were visiting and as we held Eva's hand she sang, "Jesus Loves Me." Just a short time after that Evangeline died, and soon after that, Sarah Joy. I attended Evangeline's memorial service at the church not long after losing little Sarah, but it was there that we saw another unusual, but beautiful way that God intertwines lives, for Gloria and her family had not realized until then that little Sarah had met their loved one.

On February 29, Elizabeth's fourth birthday, Great Aunt Margaret died. She had been having some increasing difficulty since the reunion the previous summer. Sarah Joy always had special associations for each person she knew. For Aunt Margaret, it was singing "Jingle Bells" and also the memory of the time Aunt Margaret tried to get on the children's tricycle and then couldn't get up. The picture we took captured the tears of laughter we shared with little Sarah that day. The children joined us at the funeral home, a short graveside service, and a catered meal at a restaurant in downtown Flushing. Sarah Joy had already been to three funeral services in the year 2000. We never, of course, anticipated that before the year was over we would be going to her funeral.

In the spring, Sarah started having some occasional difficulty at school and on the bus. She would throw her glasses, throw her food at lunch, and spit when getting on the bus, or other times that she was disturbed. With hindsight, it is easier to see that she was displaying typical 2-3 year old behavior -- perhaps establishing independence for the first time, and trying, in any way possible to be in control -- something she had never tried to do before. At the age of two or three, she rarely, if ever, acted frustrated, but now she was showing frustration frequently. All of the adults in her life were working to help her understand and work through her feelings. Anne worked out a reward system to help her have an incentive to have a good day at school. Chuck E Cheese's had worked so well a few months before, so it was tried again. She had to earn a certain number of smiley faces to be able to go to Chuck E Cheese's on her birthday. She could earn these by having a good report from each of her therapy times, classroom time, and lunchroom time. If she got on the bus well, she could get off the bus at Granny and Papa's -- a treat for her and us as well. Her sixth birthday approached. With a little finagling we were able to celebrate at Chuck E Cheese's. We taped the entire evening. How precious that tape is today! She was very happy and thoroughly enjoyed every minute of her time there. We all traveled down together in the church van, and again, met with Aunt Sarah who loved the family gatherings with her nieces and nephews. It stormed on the way home, but nothing could dampen the joy of our little birthday girl.

In June Sarah's class had a field trip to a wildlife preserve in Frankenmuth. Because someone would need to watch the other children, Anne asked Sarah if she wanted Mama to go with her or Granny to go with her. This time she chose Granny. Anne had joined her on two field trips and that was special to Sarah as well. (Mrs. Lawrence, the teacher, just recently sent pictures of one of those events to Anne and the family. How priceless it is to see fairly recent pictures of her that we have not seen before!). I joined Sarah on the trip. It was special from start to finish. We sat together on the bus enjoying the ride together. I had no agenda, so followed Sarah wherever she wanted to go once we arrived at the park. The one thing she kept saying she wanted to see were zebra. I had no idea if there were any there, but later heard someone say there were and that they were at the back of the park. We set out to find them. When we finally did find them, she stood at the fence and watched them for a long time. She didn't express an interest to see any other animals, but we stopped by most of the pens on our way back to the front of the park. After our picnic lunch we went into the gift shop for Sarah to pick something out with her spending money. She easily found something for Elizabeth and for Levi, but when it came to finding something for herself, again, she simply could not decide. When it was time to go I had to coax her over to the cash register. We simply paid for the item she had in her hand at the time (a giraffe visor) and said it was time to get back on the bus. I thought she would sleep going home and was concerned about her having seizures. She stayed awake the whole trip back -- over an hour. She sat on my lap and rehearsed many of the events of the day. I got a chance to visit a bit with Mrs. Lawrence and a couple of the students while on the trip home. It had been a special day!

It was nice when school was out in June. That removed many of the stresses. Anne's schedule with the children was able to be more relaxed -- just not having to get Sarah ready for school and then working out the timing for getting her to the end of the driveway for a waiting school bus and having three preschoolers in the house unattended while she was with Sarah. We look back and don't know how everything worked out as well as it did under the trying circumstances. Also, once Granny and Papa were out of school in early June, we were more free to help with the cherished young ones. We were all excited about a family vacation the first week in July. Aunt Sarah was able to get time off from both jobs and join us. Anne treasures the fact that we had this special family time together and that just a few months before, they had gotten their first family portrait ever taken. There was no way to know how significant those choices were until she was no longer with us.

We had planned to see Mrs. Weldon in Kentucky. She was a former English teacher for both Tom and me, and we had kept in touch over the years, visiting every couple of years when it worked out. Even though it did not work out to see her this year, we kept the rest of our plans the same -- a trip to the Cincinnati Zoo, and then a stop at the new aquarium in Newport, Kentucky. The two major events were as much of a trial as a pleasure. The day we went to the zoo it was so hot we longed to get back to the air-conditioned van. The trip to the aquarium the next day proved to be a little better experience. We had bought tickets in advance at the motel where we were staying, so didn't have to wait what probably would have been hours to get into even the main entrance. Even so, it was crowded and pretty slow going. No strollers were allowed, so we knew we were in for a difficult time with an infant, a toddler, a four year old, and Sarah Joy, who in her weakened condition would have trouble going any distance. We were given special permission to use Sarah's stroller and that helped. To be sure there were a lot of attractive aquarium displays, but it was hard to take everything in because of the crowds and how much there was to see. The highlight for the children was going to the gift shop to pick out a souvenir with money "Tucker" (Great Grandma Tucker) had given them. Sarah Joy narrowed her decision to a shirt, but then finding just the right shirt was a challenge. She finally decided and wore her shirt to bed that night as well as the next day. Later that day, we went to see a movie. That turned out to be a difficult time, because there weren't enough seats for all of us to sit together. Sarah wanted to change seats, and when Anne required her to stay put, she was frustrated and slept. Not long after the movie started, mild seizures began, and by the time the movie was over and we were back in the van she was having cluster seizures where a new seizure would begin before the former one ended. (I have wondered if that is what happened the night she died). When we got back to the motel it took a couple hours to get her fully awake again. The one thing the children had loved about the trip was swimming in the pool. We got her in her swimsuit and took her to the pool. At first she remained weak and didn't really respond, but she wanted Mama to go in the pool, so both Mama and Aunt Sarah went in as well. Before coming out of the pool she was fully alert again and having a good time. Anne said she slept with her that night, and she didn't have any more seizures during the night (a rare occurrence).

We headed home on the 4th of July. We dropped Aunt Sarah off at her apartment in Detroit, then headed home -- the last one hour stretch. After a looked-forward-to event there is a bit of a let down when it is over. I think Sarah Joy felt these as keenly as anyone and would always inquire even before we got home, "Where we going?" It had been a pretty intense four days. Vacation was over, it was Wednesday night and Sarah Joy came to church with me. We sat right up front so she could see Lisa, the guitar player, Carl, the bass player, and Pastor Keith when he preached. When I shared about out trip, Sarah wanted to speak into the microphone. She shared with a weak voice that she got to go swimming. As the service progressed, she looked around and waved to anyone of her "friends" that she could gain eye contact with. At one point Pastor Randy moved from his seat and came over and sat beside her to wipe her nose after a sneeze -- talk about adoring care.

On Friday night Sarah Joy and Elizabeth went with Anne and Luke to prayer and music practice -- the boys spent the night with us. That had been the routine for several weeks. On Saturday, Anne told me that Friday night before prayer, Sarah got a microphone and sang unprompted,

"Come and go with me, to my Father's house,

where there's joy, joy, joy.

Jesus is the way to my Father's house,

where there's joy, joy, joy".

It seemed important then, but powerfully important after losing her three days later. In fact, that incident was the inspiration for the programs at the funeral home visitation and for the funeral at the church.

Saturday, Sarah came to spend the night, because she was going to go to church with us in Shiloh the next day and then go on to the Lund reunion. While it was still early in the evening she was expressing the desire to go home to say, "Good night". This was not really typical behavior for her, so I felt somewhat compelled to go along with it. I walked over to let her say, "Good night", but when we got there she seemed in no hurry to return back with me. I told Anne I would go back home and Sarah could come back whenever she wanted. It got past 9:00 p.m., so we assumed she would sleep at home and Luke or Anne would bring her to our place in the morning before they left for church. At about the time we were headed to bed ourselves, we heard a knock on the sliding glass doors. It was Abba (Daddy) holding Sarah Joy all ready for bed. She had returned for the night. I sat and held her for a while -- holding her always ministered powerfully to me. It was at those times I thanked God for how special Sarah Joy was to me, and that I realized that must be how special each of us is to Him. Soon I took her in and put her to bed. I prayed with her and again thought about how amazing it was that she never feared going to bed, even though it was the very time she was plagued with seizures.

When she awoke the next morning, she was weak as always during times of high seizure activity. She had an egg (almost always her choice) and we got her dressed for the trip. I remember she was so weak it was hard for her to sit up long enough for me to get her hair done. Even so, she was happy -- we were going somewhere! She rode well for two hours, but was fidgety at church -- moving frequently from Papa's lap to mine and then back again. At her own church (and even at Pastor Keith's) she had more liberty to "travel" and would stay in one spot (one of her significant people) only a short while, then move on to someone else. Our niece Susan, and her husband, Raymond, (whose wedding we had attended less than a year ago), were sitting right behind us and nearby were Clinton and Jean Sinclair (also relatives on Tom's side). After the service we went to Donald Lund's for the reunion picnic. It had stormed on and off throughout the night and morning. It was clear by the time we arrived and were ready to eat. Sarah Joy loved occasions such as these (which is why we were always open to take her). She would worm her way into almost any adult's heart. After we ate most people placed their chairs in a circle in the driveway to be able to visit. Sarah played with teasing adults by rubbing their heads with her hand -- the adults and Sarah loved every minute of the play. Jean Sinclair's mother, Viola, came over to where I was sitting and said, concerning Sarah, "She's one of God's special children". I knew what she meant -- she saw Sarah had special challenges, and yet was a beautiful and charming little girl. We visited a few moments until Sarah wandered into the big yard with a few other children -- laughing and enjoying the freedom. She was reluctant to come when we called for her, so that we could head for home. Because Tom's mom had not been at the picnic, we drove to her place and visited for a few minutes. Sarah enjoyed one more opportunity to laugh and be silly before getting back in the car for a two hour drive. Sarah, of course, dozed as we drove home -- meaning the beginning of seizures. Sarah was groggy again when we arrived home. Luke and Anne were still not home from Luke's parents so we sat outside in the swing for a while to try to rouse her. When Luke and Anne did arrive home they had much to do to prepare for the outing with the teens from church that was to take place all the following week.

Without knowing it, this was to be our last day with our precious little one. Anne related to me later, the few things that meant a lot to her in the days ahead. Later that night she had let Sarah wear a long sleeved Tweety Bird shirt even though it was warm. It was one that Elizabeth had gotten from Grandma Welch earlier that day, and Sarah loved Tweety Bird. While Luke and Anne were packing, Sarah Joy asked for the family to pray together, and even though they were overwhelmed with things to do, they did stop what they were doing and joined together to pray with Sarah. After Sarah went to bed and had that first seizure of the night, Anne went in and held her hand, stroked her head, and kissed her good night again. Luke and Anne got to bed after midnight.

There was no way to be prepared for what they were to face the next morning, July 10, when they went in to get the children up to go to Granny and Papa's. Sarah Joy's soul and spirit had left her body. The next several hours were as close to unbearable as any of us have ever experienced. We knew she was at peace, but all of us had much to work through before getting back to a place of peace. It has been different for each of us -- some are not all the way back to peace yet -- each grieves in his or her own way and the timetable is different for each. The good thing is that I believe we have all tried to be a help to one another and to be patient with one another. The strain and grief of that first day were cushioned by extended arms of love. Sarah Joy's own pastor, Toby Tyler, and his wife Connie, as well as other close friends from Victory World Outreach spent the entire day with Luke and Anne.

One of the first "counter attacks" came almost immediately. That first night, sleep did not come easily for anyone. I had just dozed off lightly about 3:00 a.m. when the phone rang. It was Anne -- she couldn't sleep and was being attacked with arrows of false guilt -- she felt so responsible, though, of course, she wasn't. She asked if she could come to our place, or I could come to hers. Since Elizabeth was with her Aunt Tassie and Uncle Lee, and Levi was at our place, it seemed good that I go there. We both sat in the double rocking love seat where nightly the children would sit and rock with Anne before going to bed -- Sarah would sit holding Mama's braid to her face while sucking her thumb (the only time she sucked her thumb). Anne started to speak out the guilt she was feeling. I remember the words the Lord brought to my heart and mind -- how most of the sacrifices in the Old Testament were for unintentional sin. We spoke how there was no way to walk the walk perfectly in our own righteousness, for we can fail daily, even several times daily, but that is precisely what Jesus came to accomplish for us. He died for our intentional sins and our unintentional sins. He walked in perfect righteousness and has offered it as a gift to us. We sat there on the love seat. Anne prayed out, admitting our frailty before God, but gladly receiving what Jesus offers -- forgiveness, restoration, freedom from guilt. We both felt a blanket of peace cover us. We rested with my arm around her and her head on my shoulder. I don't know that we slept, but we rested comfortably for a couple of hours. I was holding my first born, who had just lost her first born, and found peace because the very God who gave us life and breath gave up His firstborn that we might be reconciled to Him.

The next couple days were filled with heavy decisions for Luke and Anne. They dealt with them admirably. As difficult as it was to face the reality that our precious little gift was gone, God found countless ways to shower His love and comfort upon us. Every time we would experience a new expression of His love, we would break out in tears. One particular witness of His love came early Tuesday afternoon. Though Anne and I had felt release from guilt and condemnation and knew we could go on in strength, God chose to confirm it to us in the natural. A gentleman from Child Protective Services had to be present at the autopsy to determine if there had been any wrong doing or neglect -- just routine investigation. I happened to walk into the house a few minutes after he had arrived and spoken to Luke and Anne. When I walked in, Anne said, "Mom this gentleman has something to share that I think you're going to want to hear." He restated that it was determined right from the outset that Sarah Joy had died in a seizure, not from getting caught by the bunk bed ladder, which is how it appeared. Her little body had simply fallen into that position from the seizure. This information changed nothing. It did not bring Sarah back, and Anne and I, at least, had already found release, but it did show us that God loves us enough to even verify in the natural what is already true in the spiritual. God took the poison out of the enemy's arrow, and He has continued to do so.

The Lord graced us the next two days to greet family and friends at the funeral home and to lift Him high, even at the funeral. For even in our loss, He is sufficient, He is still good, He is always worthy to be praised. He is the only One worthy of our complete trust. I know a miracle took place within me in order for me to be able to accept the loss of what every part of my being wanted to hold on to.

There were numerous acts of love and blessing showered upon us for days and weeks. There were a flood of cards and gifts of food and money. It truly helped us to see that little Sarah Joy was significant to others, as well as to ourselves. The ripple of love goes on. One gift to Luke, Anne, and family, given anonymously, was to have a white rosebud delivered to their house every day for one full year. Almost immediately, Anne saw ways to spread love and joy to others by gifting someone every day with a "Sarah Joy Rose"!

We had prayed from start to finish for Sarah Joy's healing. Though God moved differently than we had desired, He still moved powerfully and miraculously, but in unexpected ways. Anne had commented to me soon after Sarah's death that, just as the disciples weren't meant to sit around and speak of what a blessing it was to have had Jesus in their lives for three years, but they were to proclaim that in Him all could find life eternal. Anne didn't want to see Sarah Joy's brief six years, only as a blessed insertion into the lives of all who knew her. She wanted her life and her death to make a difference. I feel the same. Because of Jesus it can. Anne's giving of the "Rose" is a way to pass on life, a way to share the hope that is within us -- that of being reunited with Sarah Joy again. Anne said she thought she might get the delivering of a rose as a gift for herself at the end of the year, just to be able to continue giving in memory of Sarah Joy!

My writing Sarah Joy's story (just a glimpse of the whole) is like the rosebud for Anne. It is a small way in which I can release the love and gratitude I feel for having had the privilege of having Sarah Joy in my life, but, also, it is my prayer that by the sharing of her story, someone would be prompted to seek the One Who is the giver of her life and is, in fact, author of all. The One Who will bring what we know today all to a close, and has promised what is spoken in I Corinthians 2:9 ...

'No eye has seen, no ear has heard,

no mind has conceived what God has prepared

for those who love Him.'

Though we have suffered as a result of her loss, and indeed, though Sarah Joy suffered much in her six years, the Words of Romans 8:18 reassure us of God's goodness ...

"I consider that our present sufferings

are not worth comparing with the glory that will be revealed in us."

My dear, dear, Sarah Joy, because of my faith and confidence in God, in the work already accomplished by Jesus, the Christ, and the ongoing work of the Holy Spirit, I have the complete trust and blessed hope (which is a sure thing) of seeing you again and rejoicing together at the beautiful handiwork of the Lord. You were truly a remarkable and beautiful thread woven into the fabric of our lives. When we see the whole fabric together we will all weep and marvel at God's incredible design.

Little did I know, when I told my story, "Joyride of the 90's", how connected our two stories would be. I may have had the privilege and honor of welcoming you into this world, but, Precious One, you have the privilege and honor of welcoming me, and many others in your love circle, into the Eternal Kingdom. Until then ...

Love beyond measure,
Granny

Send us your memories of Sarah Joy to be posted: sarahjoymemories@gmail.com