This page is dedicated to the memory of Kelsey Rae Wishman, 5-13-93 to 8-15-93,
the best daughter and little sister that any family could ever want. 

Update 05-15-01: Kelsey had her 8th birthday on Mother's Day. That's always tougher for me when those two days coincide. There's a little girl in our Tae Kwon Do class who just got her first color belt on 5-14. She was born on the exact date as Kelsey, 5-13-93. It was hard to watch her test and think that Kelsey could have been testing that day with us as a brand new 8-year-old. As Emily Dickenson said, "time never did assuage." There are times when my heart breaks as hard as it did when she died. How do we go on? We just do.

Now back to the original content.

Hi, and thanks for stopping by Kelsey's Memorial Dolphin Page. I'm sure that some of you are surprised when you get here, especially if you've just left a search engine through a dolphin link. If you're able, stay a minute or two. The dolphin pictures are nice, and there are a few links you might be able to use. The rest of you are probably here because you entered through a web ring, or because you did a search for information on Trisomy disorders. Welcome, all of you. I'd like to share our special little girl with you.

Our baby Kelsey was born with a genetic disorder called Trisomy 13. She had an extra chromosome attached to the 13th pair. By comparison, the disorder Down Syndrome is also known as Trisomy 21, where the 21st pair of chromosomes is affected. Trisomy 13 appears to be almost assuredly fatal in early childhood. Below you will find any links on the web that we have been able to locate regarding this subject.

We had just moved from Iowa in late March 1993, and didn't know anyone for 200 miles. We were lucky to find a great doctor and nurse combination in Dr. Paul Elbing and Debbie Frank, RN, at the Family Medical Clinic in Amery. I was 30 weeks pregnant at my first appointment with them. Because I'd had a previous C-section and wanted to try a VBAC, my previous doctor in Iowa had suggested I also have an OB-GYN specialist. I was therefore assigned to Dr. Carol Ball from St. Paul Ramsey Medical Center in St. Paul. Her presence in our lives has been a tremendous gift to us. That referral also meant that our baby would be born in St. Paul, about 55 miles from our house.

I was only 33 at the time, so no amniocentesis was indicated. My initial ultrasound only suggested that my due date might be off by a couple of weeks. We didn't know until she was born that she was sick, and naturally we were devastated at the finding.

I had come down with pre-eclampsia at around my 36th week of pregnancy, and was ordered to partial bed rest--2 hours on my left side, 2 hours no more than light housework. I remember joking with Dr. Ball that I had Twins tickets, and finally she agreed that I could go to the game. At my next appointment, an ultrasound indicated that Kelsey weighed only around four pounds. As our wonderful Dr. Ball was concerned that the placenta might be failing, we agreed to induce labor in the hopes of getting her out to feed her.

After 2 1/2 days of painful labor that was going nowhere, I asked to be put under general anaesthesia and have a C-section. When I woke up, people were standing around me looking worried and saying something about "Trisomy." All I remember was being really confused. I kept kissing my baby and holding her the way any new mom would, but I felt like I'd been run over by a truck from the drugs and the news.

I remember hoping for the few days it took for the test results to come back. I wanted them to be wrong, and convinced myself they were. The genetics counselor, Beth Ann Bloom, was very somber as she and the doctor delivered the bad news. All I remember saying at the time was something about being concerned with her survival and her quality of life. We didn't care that she was sick. We just wanted her. We listened to the gloomy statistics. Most die without ever leaving the hospital. A very VERY few live to be one. Fewer to 2. Almost none live to be 3, 4, or 5.

Kelsey was actually considered "lucky" according to the doctors. Many children with Trisomy 13 are born with serious heart defects, cleft palates, blindness, etc. Kelsey was the healthiest Trisomy 13 baby they'd ever seen. She had a minor heart murmur, which got worse toward the end when she finally wore out.

Our baby had the rocker-bottom feet so characteristic of children with this disorder. She also had a little flesh on one of her hands that resembled a tiny finger, but the doctor tied it off and it soon fell away. We were told that she was severely mentally retarded. None of that meant anything to us, as she was the most beautiful child in the world in our eyes.

Two weeks went by. We would go to St. Paul every night when my husband got home from work, the three of us (our two-year-old daughter Emily went as well). We didn't think we'd ever see her in her bassinet. If it wasn't an albumin deficiency, it was a low hematocrit, or an infection. We were at the end of our wits.

We were finally able to bring our child home with us because we learned to gavage feed her and otherwise care for her intensive needs. All new parents worry over every little whimper, every grimace, every bottle that isn't finished. With my older child, I'd worried about calling the doctor too often, that he'd think I was being silly. With Kelsey, a trip to the doctor became as common as a trip to the store for a gallon of milk.

Our lives were invaded by public health nurses, occupational therapists, social workers of all types. All were concerned with making sure Kelsey got everything she needed to get a jump start on her life. We really appreciated all the advice, although at times we wanted control back. We wanted to scream, "She's going to DIE! Can't we just love her?!?" We're glad, in retrospect, that those services were there for her. I wonder how much it contributed to our denial that she would fail, but I don't know what I'd do differently if I had it to do all over again.

After two weeks at home, it was two weeks back at Ramsey for our little girl. Her hematocrit level was extremely low. They had to put IVs in the side of her little head because they couldn't find anywhere else that would work. She was on oxygen in her incubator, which caused her to be cold. Every time we held her, alarms would constantly buzz because one electrode or another had moved. We didn't think we'd ever convince anyone to send her home with us again. It seemed as though they thought they could cure her, and they tried so hard. Finally those two long weeks ended, and we came home to tube feedings and all night colic again.

By this time, Kelsey was about six weeks old. We kept telling all those who were feeling sorry for us that we intended to celebrate our little girl's life. We would grieve when the time came. Relatives visited. We took all kinds of pictures and video. The neighbors, Marion and the late Bart Anderson, adopted the whole family--they dropped in, held the baby, mowed our lawn for us, you name it. 

August 13, Tom and I celebrated our first wedding anniversary. Kelsey was our first child together, and she turned three months the same day! It was a good day, but the happiness was not to last. On Sunday morning, August 15, 1993, things took a turn for the worst.

I had taken Kelsey to the doctor the 13th because I thought she seemed a little more tired than usual and I wanted to be sure her blood count hadn't fallen again. Her hematocrit was normal, so we were sent back home. Saturday night Kelsey fussed a lot. She didn't act hungry. When we did tube feed her, she just lay there and let the formula run in. Tom and I took turns sleeping what little we could.

Sunday mid-morning, Tom woke me up with a start. He told me that Kelsey was pretty sick, and that he'd like me to take a look at her. She seemed to be puffing a little, but I didn't think it was too serious. I told him to get dressed and take her to the hospital, which was only about seven minutes away, four if you're going 80. While he quickly changed, I called the ER, changed Kelsey's diaper, put a new outfit on her, and washed her face. As soon as he walked out the door, I got Emily dressed, got her a banana and a glass of milk and followed right behind him.

When I got to the hospital, a nurse met me at the door and said, "You knew she didn't make it, didn't you?" I about lost my footing. I had no idea. I just wanted to take her to Amery so they could assess whether she needed to be transported to St. Paul. I was concerned that she might need breathing assistance. I didn't know what was happening.

When I got to the room where Tom was, all he could do is stare at me. When he could, he told me what had happened. He was almost at the hospital, like 1/2 a block away, when he didn't hear her breathing anymore. He was surprised, but sped up and got her into the ER and into the arms of Dr. Bjornson within seconds. Dr. said her heart had stopped already, and asked if we wanted CPR. He said he didn't think it would work. Tom had shaken his head "no."

We're not sure if it was shock, heart failure, or what that actually caused her death. All we knew was that our little girl had lost her fight and had gone to sleep. We took turns holding her while we talked to the minister and the funeral home director. Two hours later, we went home, just three of us. Charlie and Edie both lived in Iowa with their mother, so we had to tell them over the phone. No one took the news well.

John Rieth officiated her memorial at the Williams funeral home in Amery. Sheriff's deputies showed up. A lady who had watched my little girl for a few hours came. The room was packed. Our families came from 400 miles away.

At the ceremony, we placed a collage of all the pictures we could find of Kelsey being held by a relative. I later found one of her with my mother, which you will find on our pictures page. The song was Tears in Heaven, by Eric Clapton, which he wrote for his little boy who died. The sheriff's department directed traffic at the major highway intersection between Amery and Centuria, where Kelsey was buried, some 20 miles away. Later, we were to buy a house so close we can stand on our deck and see the juniper trees that watch over Kelsey where she lay.

We have Monday-morning-quarterbacked the day of her death 500 times. What could/should we have done differently? Was it our fault? Should the doctor have suspected something on the Friday before? We'll probably do this sort of thing until we take our own last breaths.

The hardest thing we've had to face since then is the decision to have more children. We worried it would happen to another baby. On my birthday in 1994, I had a miscarriage. Then, on January 20, 1995, Mark was born! Now we have Seth Gunnar, too, born October 21, 1996. We now worry every time someone gets sick, is it serious? We've been told it's normal. Dr. Ball stated it eloquently. "When something terrible happens, it makes us think that after that, anything that CAN happen, WILL happen."

Through all the sadness, we have found happiness also. Our other children are healthy, happy, and well-adjusted. They know that Mom and Dad are still a little sad sometimes, but that's ok. It's just like the minister and hospital staff told us. It's ok to be sad in front of the kids once in awhile, as long as they know you're in control and they're ok. We're all ok because we have each other to help us be stronger. You know we're surviving if you've visited any of the other family members' pages. We're a fun-loving bunch!

I haven't gone back to work full-time. We decided that I should stay home with our little ones until they're all in school full time. The bigger house and nicer car can wait. Since I am home, the isolation is sometimes hard. Our town is only 900 people, so my peer group is rather small anyway. Being somewhat new to this area, even after eight years, feels a little confining at times. I taught myself to make these pages for something to do, and I made this page for Kelsey as a memorial to her that will last and be shared by many. I don't think that getting on with one's life has to mean forgetting those who still live in our hearts.

In our family, everyone has an animal to represent him/her. This is based very very loosely on the Native American belief in animal guides. In our family's case, we choose our animals based on the characteristics of that creature which we find attractive and/or most like the person. We chose the dolphin for Kelsey because of their mutual beauty, grace, strength of spirit, and intelligence. Whenever there's a family picture to be taken, someone holds a stuffed dolphin so that Kelsey can be in the picture too.

While Kelsey may have been classified as mentally retarded, she accomplished a lot in a short amount of time. She radically changed the lives of many people who before may have felt lost and undirected. We now know the importance of living everyday to its fullest, and not taking for granted those for whom we care.

I suppose that some people will think that all this is rather morbid. I don't see it that way. When I look at this page, I am sad, for sure. But most of all, I have a chance to celebrate her life again, and to share her with all of you. If you've read all of this up to now, you certainly know what I mean.

If you're a mom and dad out there who've just found out that their new baby has a Trisomy disorder, hold onto each other tight. There are many days out there when all you can do is breathe deeply and wait for the next news to come. Write to us anytime. If you're a doctor, a researcher, or a student, we're happy to share what we know. We truly live in a global community, and it is up to us to help each other through our tough times. To those of you who have written, thank-you. You're in our hearts. Write again anytime.

Thank-you so much for coming to Kelsey's site. If you have the time, please take a minute to visit the rest of her memorial. If you have suggestions, please write to one of us at the e-mail address below.

Family Pictures
More Family Pictures
Letter to Kelsey from Mom
Poem "The Elephant in the Room"
Awards this site has received

Kelsey's Companions

Please let me know if a link doesn't work. I try to check them regularly, but sometimes I miss.

Glossary of Genetic Terms
Sam's Place - link no longer works
S.O.F.T. Support--Trisomy
Columbia Genome Center
MUMS (Mothers United for Moral Support): National Parent-to-Parent Network
National Organization for Rare Disorders (NORD)
The Alliance of Genetic Support Groups
Mental Health Net - Self-Help Sourcebook OnLine Index
Adoption.com
Virtual Memorials

Thank-you for visiting my memorial home page. You can e-mail my mom or dad with any comments about this page.

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