My daughter was born in Minot on October 7th. She weighed 7 pounds 8 ounces and was 20.5 inches long. I wanted to name her Georgia in honor of my dad but he was adamantly opposed to it. That night I had a dream about her where the perfect name came to me. The next day I called her Charity Mae for the first time. Her middle name, Mae, is the same as my mom’s and is in honor of her.
Charity and I were on our own by now and planning to leave Minot and move to Fargo so I took her to the doctor for a check-up and to get the name of a good pediatrician in Fargo. When he listened to Charity’s chest he said he heard a slight murmur but that we shouldn’t be concerned as many children have them and grow out of them. I didn’t want to take any chances so when we got to Fargo I took her to the Crippled Children’s Services and they did an echocardiogram, an electrocardiogram and a chest x-ray. Her new physician, Dr. Attwood, looked at the test results and told us Charity had something more than just a simple heart murmur. He wanted to do a heart catheterization which was scheduled on Charity’s fourth birthday. After the test Dr. Attwood told us Charity had cardiomyopathy but that she wasn’t sick and seemed stable. He thought we could just see how she does and have her checked periodically.
On May 1st Head start called to tell me to pick Charity up because they thought she had the flu. When I got there Charity’s lips were blue and she couldn’t keep her eyes focused on me. I ran her to the emergency room where they discovered she had a very rapid heart rate. She was admitted to the hospital and put in the Intensive Care Unit until she was stable. Dr. Attwood discussed Charity’s condition with a heart specialist in Omaha and made an appointment for her to go there right away for a heart biopsy.
We drove to Omaha where Charity had a total of three heart biopsies. Except for two nights I stayed with her the whole time. The hospitalization was a difficult ordeal. When they came in to take her blood every morning she screamed. Once they turned to me and meanly said, “Mamm, you need to hold her down so we can take her blood.”
As I leaned over Charity to hold her the tears were coming down and there was fear all over her face. My heart broke when she turned to me and pleaded, “Mom, please don’t let them hurt me again. Please, Mom!” I wish the memory of that day wasn’t still so clear in my mind.
When Charity was released from the hospital the doctor told us she had cardiomyopathy and Wolf-Parkinson-White Syndrome or WPW. She was started on inderal but had such terrible nightmares from it where she would wake up screaming that the doctor changed it to a different medication. He also advised me to restrict her from any vigorous physical activity.
After we got back to Fargo I went to the library and read up on Charity’s condition. She was four years old then and wanted to learn how to ride a bike so badly but I couldn’t let her. She was so sad and couldn’t understand why she had to have something wrong with her. It broke my heart to see her that way so I decided it was more important that she lived as a child should. It was more important that she laughed, played, and lived, instead of being kept safe under my wing and never being allowed to do the things that kids do. So Charity did just that. She learned to ride her bike; she took swimming lessons; she did gymnastics; and of course, she danced.
When Charity was six years old she got sick. She threw up a lot and had a fever. I went to the drugstore to get some Tylenol and pedialyte and saw this stuffed clown on the shelf. I couldn’t resist the urge to buy it for Charity. I brought it home and that night she slept with that stuffed clown. The next day she felt so much better. Charity was sure it was because of the clown and named it “the Curing Clown.” After that, every time she got sick she would get out her Curing Clown and tuck it under her at night while she slept.
Charity was always so nurturing. There was a time when she was 14 years old and I was really sick. She waited on me and made sure I was taken care of. She even brought me her Curing Clown and told me to hold it on the area that hurt. She assured me that by morning I would feel better. After Charity died her grandpa found out he had lung cancer. When he was in the hospital I brought him the Curing Clown because I knew that’s what Charity would have done.
After our stay in Omaha Charity was treated at MeritCare Clinic in Fargo. Her regular checkups usually consisted of a chest x-ray, an echocardiogram, an electrocardiogram and a holter monitor. A holter monitor is a device that is connected to the patient and records their heart rhythm for 24 hours on a tape. When Charity was little MeritCare didn’t have a child-sized monitor so she had to wear the adult one which was the size of a large box. She was suppose to carry on her normal daily activities while she had the monitor on but that was pretty hard to do. The tape recorder part bumped against her so much when she walked that it actually bruised her leg. Imagine a little girl carrying around this big box which is connected to her chest by several wires.
One time when Charity was six years old and was wearing “the box” we went to the store. People looked twice at her and she saw a few young kids who pointed at her and then asked their parents what was wrong with her. As soon as we left the store and got to our car Charity started to cry. She said, “I’ll never stare at someone who looks different ever again.” And she never did. She had compassion and respect for other people especially if they looked different from everyone else.
Charity truly enjoyed helping other people. She enjoyed making them smile and laugh. When she was 11 years old she desperately wanted to be a volunteer at the children’s hospital but we were told she was too young. I asked them if she could if I went with her and they said yes. So we both volunteered. Charity read and played games with the sick kids at the hospital and they all seemed to enjoy her being there. One little girl even asked Charity to hold the emesis basin for her while she vomited. Just the thought of that was enough to make Charity sick to her stomach but unselfishly she did what the little girl asked.
Charity told me she always wished she and I could buy a little house together. “A real home,” she would say, instead of always living in apartments. One day in the spring of 1993 I heard that the city of Moorhead, MN (just across the river from Fargo) was going to move five homes it owned onto some vacant land. If you liked one you could sign up to buy it. The city would then draw names to determine who would get each house but the lucky winner would still have to arrange for their own loan.
Charity and I liked this one little blue house. It had two bedrooms and a quaint, old-fashioned design. There were hardwood floors in the bedrooms and a small built-in china hutch. It was being sold for $40,000 and there was no yard so the winner would also have to put in grass. Over two hundred people signed up to buy that little blue house. Well, one day the city of Moorhead called me and said my name had been drawn. After a lot of talking and hard work I was finally approved for a loan so we got the house. Charity was so excited.
Charity was with her dad the weekend we moved in. Two friends helped me paint the inside of the entire house and then we moved the furniture in the next day. When Charity’s dad dropped her off Sunday afternoon she cried because she was so happy. We finally had a home of our own.
Our new house had electric baseboard heaters which didn’t put out a lot of heat so in the winter we often sat on the couch and snuggled under our quilt together to keep warm. It was about this time that Charity started sleeping with me. I was still reading to her every night and after the story we said our prayers and I would tuck her into her own bed. A few hours later though she would be sleeping next to me. She had a hard time breathing when she laid down and would get scared so she crawled in bed with me.
One day, years later, after I was remarried and we lived in a big new house Charity said to me, “Mom, I know that we have a really nice house and everything, but I miss the days when it was just you and me in our tiny blue house, having to keep warm under the blankets together.” You don’t know how much I miss that now too, Charity.
After being followed for a few years the doctors in Fargo thought that Charity would eventually need a heart transplant and since that wasn’t available there we were referred to the Mayo Clinic. We had been going to Mayo for a little over two years when Charity’s cardiologist, Dr. Porter, said it was time to get her on a transplant list. Charity was adamant about not missing school so we waited until the first week in June to schedule the week long series of appointments and tests that were necessary to become a heart transplant candidate.
The first day of testing was emotionally and physically draining. By 3:00 PM we were both ready to quit, Charity more than I. My mom had just driven in from Eau Claire, WI to offer her support which was a big lift for both of us. The next day, Tuesday, was better and by Wednesday we were told Charity didn’t need to finish the remaining tests. She was doing so well the doctors opted to not put her on the transplant list at that time. We were all so happy. Charity, Mom and I took off for Eau Claire to tell Grandpa the good news.
On Sunday we drove back to Fargo and the next day, June 15th, I went into the hospital for open-heart surgery. They had found a 1-1/2 inch hole in the atrial septal wall of my heart that needed to be patched. To determine if Charity had, some how, inherited her heart condition from me they had done an echocardiogram on me and found the hole completely by surprise. It had been there my whole life and I never knew it. I told Charity she saved my life because if she hadn’t gotten sick with cardiomyopathy the hole in my heart may not have been found until it was too late to fix it or until a serious complication had already occurred.
My operation was on my 33rd birthday and Mom, Dad and Charity were all there. While I was in the hospital Charity never left my side and even slept there at night. Once I was out of the woods Dad had to leave but Mom stayed to help take of Charity and me while I recovered.
I remember one time, before my surgery, Charity was so distressed. She was scared to have a transplant and was afraid she would lose me because of the hole in my heart. I told her God would always look out for us. If we prayed and believed in Him everything would be okay. In order to help her understand better I got an empty shoe box. I asked her to take both of my hands and hold them over the box. I told her to close her eyes and pray with me. We prayed together out loud that God would take all of our problems. We then put the cover on the box and wrapped it in pretty paper and put a Christmas tag on it that read:
From: Our troubles. Please take them.
Then we went to the church when no one else was there and took the box up to the altar. We knelt down and said a prayer and left without our box of troubles.
We took a trip to get away from the North Dakota winter. For something different we choose San Francisco and ran into a week of cold rainy weather. We signed up to take a tour of Alcatraz prison and rode the ferry boat out to the island. From where the boat drops you off up to the actual prison is a long walk up a long hill. The day we were there it was a cold and wet walk as well. By the time Charity reached the top she was soaked to the bone. She had to be tired and chilled as well but never complained once. She finished the tour and the boat ride back to Fisherman’s Wharf without saying a word about the miserable conditions.
Charity made friends quite easily and was always liked by her teachers. I don’t mean to brag but she was quite popular with the other kids at school. Once when she was in junior high she noticed these two guys, who were also popular boys, teasing and making fun of another boy who was a little heavy. Charity knew the boy who was being teased because she had him in one of her classes. She considered him a friend and couldn’t stand by and let him be hurt that way. So Charity went up to the two boys and told them off. They stopped and apologized to Charity but she said, “You shouldn’t be apologizing to me. You need to apologize to him.” Which they did because they didn’t want her to be mad at them. Charity was always there for the person that no one else wanted to be friends with. She had such a gentle heart.
Charity and I knew for a long time that she would not be able to carry a child. The doctors told us that pregnancy could be fatal. This limitation hurt her more than any other because she really wanted to have children some day. I told her that sometimes the experts are wrong and that maybe by the time she was old enough to have kids she would be better. I wanted her to keep dreaming. Now, some people might think I was wrong to do that but a part of me really did believe she could get better.
After I remarried in September ’95 we told Charity that we wanted to have a baby. Well, she was so excited, but really didn’t like the idea of us actually trying and said, “When you decide to try, let me know so I can go stay with Grandma and Grandpa for the night.” How sweet and innocent she was. I still smile when I think about that day.
It was June ’96 when we first found out I was pregnant. We had gone to Mayo Clinic for Charity’s check-up. While we were there I became short of breath and started having severe chest pains. I went to the emergency room and was given morphine and had an x-ray scan and was diagnosed with pericarditis. I did have a pregnancy test before being treated but it was negative.
As soon as we got back to Fargo I was hospitalized for a week. When I got home I did my own pregnancy test and it was positive. My first reaction was to cry because I had had those x-rays and had taken all of that medication. I knew it wasn’t going to be good. Our baby hung on until the 12th week before it died. Charity took the news really hard. She so wanted us to have that baby.
It took until the following March for us to get pregnant again. Charity was ecstatic. Months into the pregnancy I asked her if she would be the baby’s Godmother. She was so happy she cried. She hugged me and said, “Yes, thanks mom.” I told her that if anything ever happened to me I wanted her to take care of the baby. She said, “I wouldn’t want anyone else to.”
Charity helped me get the baby’s room ready. We painted life-size characters from Winnie the Pooh and Disney on the walls and had so much fun. She was so proud of that room that every time her friends came over to the house she would show them.
Charity came to a couple of my doctor’s appointments with me and was there when they did the ultrasound. The technician asked us if we wanted to know what we were having. At first I said no but Charity pleaded, “Come on. Please, let’s find out?” So we did and when he said it was a girl Charity immediately asked, “Can we get her into ballet right away?”
I was on bed rest for the latter part of the pregnancy and Charity wouldn’t let me do anything, even folding clothes. She waited on me all the time. She was also a basketball cheerleader at the time and when parent’s night came I refused to miss it. Charity had gotten me a card and gave it to me when we got to the school. It was a thank-you for everything I’d done for her and I cried when I read it.
Charity was the second person to be introduced and I walked out to the middle of the gym floor with her. Just then I started having contractions. When I whispered to her what was happening she said in her normal voice, “Oh my God, mom, not here. I’ll help you.” So she put her arm around me and we stood there until everyone was introduced hoping all the time no one would notice us. She was so scared it made me laugh.
On November 22nd, the Saturday before Thanksgiving, I was having several contractions. Gary was on call at the hospital and I told Charity we better get our Christmas decorations up now because the baby was going to be coming soon. We spent most of the day putting them up. On Sunday the contractions were coming every 20 minutes or so and I told Charity we better go to the grocery store to get some things. She said, “You’re kidding right, mom?”
“Oh my God, mom. Let’s go, now!!”
“Shhhh,” I said, “I don’t want anyone to know I’m having contractions.”
“Mom, I’m sure you’re not the only pregnant woman that has contractions at the grocery store.”
After a night of no sleep I went to the hospital Monday morning and was admitted. Charity went to school but called me several times, “When can I come, mom? It’s not everyday your mom has a baby.” She got to the hospital at 2:30 PM and helped me try to get comfortable. At 4:55 PM the doctor said it was time. Charity’s job was to hold my shoulders up. The baby was born at 4:57 PM. Charity tried to hold her tears back but couldn’t and it was so sweet to see. She said, “I think we should name her Summer because that’s my favorite time of year.” It took us a few days to decide but we did choose the name Summer Lynn. When I told Charity, she was so proud and happy she cried again.
Charity loved to watch Summer. One day after a couple of hours of baby sitting I came home and Charity said, “Mom, I feel like she’s my own baby.”
“Good, that’s how I wanted you to feel,” I said.
Christmas was so special that year. In my Christmas cards to family and friends I told everyone I was so happy it felt like heaven.
The third weekend in January was going to be so special, Summer’s baptism on Saturday and Charity’s confirmation on Sunday. Grandma and Grandpa came to town on Friday to watch Charity cheer at a basketball game that afternoon. Gary’s family arrived the next day. It was the 17th and Charity was frantically searching for just the right outfit for the baptism. She was so excited and at the church she was so proud. Afterward I told her, “You choose what you want for dinner. If you want to order out, you choose where and get whatever you want.” We had Chinese.
After dinner Charity held Summer and rocked with her for hours. Then she gave me a hug and a kiss and said, “Love you, mom,” and went up to bed. Little did I know those were the last words I would ever hear Charity say to me.
During the night I woke up at 5:00 AM and couldn’t get back to sleep. I couldn’t quit thinking about Charity. I looked out the window and saw it was snowing. I remember thinking, “How beautiful.” The snow flakes were huge and falling so softly. There didn’t seem to be a breeze at all so they were falling straight down.
In the morning everyone was up and ready for breakfast, except Charity. She generally got up late on Sunday so that wasn’t unusual. I went upstairs to wake her at 9:30 AM. She had fallen asleep with her TV on so when I went into her room the first thing I did was to turn it off. I walked to the side of her bed and saw her lying on her tummy with curlers in her hair. I put my hand on her back and said, “Charity, time to get up.” When she didn’t respond I bent down and kissed her face and said, “Charity, it’s freezing in here.” Then I covered her shoulders with her blanket because she was wearing sleeveless pajamas. It took me only a moment after that to realize something was terribly wrong. I yelled for my husband but he couldn’t do anything to help her. When I saw his face after he had checked her I realized she was gone.
Every detail of that morning is etched permanently into my brain and I have relived the events of that day hundreds of times in my mind. Later, Charity came to me in a dream and told me she died at 5:30 AM. She said at first she was scared and was going to come and get me. But when she sat up there were all of these arms reaching up from her bed and she wasn’t scared anymore. When I told our priest about this dream he told me the hands were the angels coming to guide her.