Kevin William Jacobs
May 17, 1992 - November 22, 1993
I miss Kevin. Maybe by telling you about him some of the pain might go away, but then again, maybe it won't. Maybe this type of pain never goes away. But I hope that none of the joy will either.
I remember when I first thought I might be pregnant, that I couldn't believe it. After all, Mark and I had only been married a month. We weren't planning to have children for a few years. I was working, but I knew my position was temporary and due to end in December, and Mark had just graduated from UF department of Environmental Engineering Sciences and didn't have a job yet. We were definitely not ready to have a baby. We didn't even have insurance.
But Kevin had other plans. So we started to think about a family and all of the responsibilities that entailed. That Christmas I began to investigate churches in Gainesville, because I felt at that time that we needed a place for our family to belong, and that it was important for children to be raised with Christian values. I thought at that time that I was doing this for Kevin not realizing how much it would do for me.
Kevin arrived on schedule, his not ours, exactly 9 months to the day after our wedding (our wedding was August 17, 1991 and Kevin was born May 17, 1992). His birth was relatively easy and wonderful. I went into labor at 2:30 AM, but didn't know it (I thought it was just cramps and went back to sleep), my water broke about 3:30, we got to the birthing center at 5:00 and Kevin was born at 7:05 AM. We were home by lunch.
His room was all ready for him. Mark had painted it a pastel green with teal green trim, and I had made the curtains all a month before. My Mom helped pick out the wall hanging and other special touches. She was there for Kevin's birth, and caught most of it on video (except when she got excited and filmed the walls and ceiling).
He had difficulty nursing at first, but after the first week he took to it like a pro. He grew fat and healthy and was always amazingly big and well developed for his age. At every check up his pediatrician would always remark that he was ahead developmentally. He learned to sit by four months and from then on he loved books.
At four months we took him to see Mark's family in Staatsburg, New York for a week. He got to meet all of his relatives on that side of the family, including his great Grandma Tillie. We also got to see my Matron of Honor, who had a daughter (her third) two days after Kevin was born. Then we continued our trip, flying out to California, where we drove from Los Angeles, where we visited one of Mark's college friends, to San Francisco. We stopped along the way to visit relatives and friends, and climb Big Sur. Then onto Napa Valley to Winters, CA, where Mark's Best Man was getting married, and Mark got to return the favor. Kevin got to wear his sleeper/tuxedo for the wedding. Kevin flew so well and we had such a good trip.
Thanksgiving we went to Atlanta to my brother and sister-in-law's, who have a daughter a year older than Kevin (May 3, 1991). Kevin then got to meet all of my family, except my sister, brother-in-law and their kids who couldn't make it, (but we went to their house in Orlando at Christmas). After the big day of watching football, the whole family packed into the minivans and cars and went to a park. It was Kevin's first time in a real swing, but he much preferred swinging in Daddy's arms.
Christmas came. It was wonderful. We were a family. Kevin was mesmerized by the lights on our tree. We came to the Christmas-eve service, and I kept Kevin in the pew with us because he loved music. I remember the time of sharing and having the overwhelming need to share with everyone the joy I was feeling at that moment. The joy of celebrating Our Savior's birth, with real understanding for the first time, and the joy of having a son and a family with which to share it. We celebrated that evening by letting Kevin open his presents from us.
Christmas day we drove to Orlando to my sister's. Kevin took his first tentative steps there, holding onto his Aunt Margo's hands. He rolled over from front to back for the first time, too. It was such an exciting week for him.
New Years came, with both sets of Grandparents coming to visit. We planned Kevin's baptism for the end of that month so that the four of them could be there. It was a wonderful day, as I also joined Faith Church. Kevin loved being the center of attention and laughed more than I can ever remember. He looked like an angel in his white three piece suit. We didn't know then that that would be the last time he would go to Faith Church.
The following weekend we went to Atlanta for my niece's baptism and my brother and sister-in-law joined a church there. My niece had a cold which Kevin caught. When we got back to Gainesville he'd developed a sinus condition and ear infection. These did not respond to antibiotics. This on top of his worsening skin condition prompted Kevin's pediatrician to send us to several specialists. The dermatologists were bewildered by his skin rash and thought it a bad case of eczema or allergic reaction. Blood tests for allergies showed none, which we knew to be in error, as we had seen Kevin's reaction to certain soaps and foods. This prompted further testing of Kevin's immune system. These results indicated an abnormal immune response.
That was when we met Dr. Sleasman, a pediatric immunologist, for the first time, early in March of this year. He discussed several possibilities, one of which was Severe Combined Immune Deficiency, which my nephew Stephen (my sister's son) had been diagnosed with 4 years ago. I had a hard time believing that, as Stephen had been severely ill almost from birth, and Kevin was such a healthy, happy baby with only a skin rash and an ear infection that wouldn't clear up. Dr. Sleasman sent for some more extensive blood tests, the result of which would take several days. I had planned on going to Atlanta, again, so we did. While there, Dr. Sleasman called to confirm that Kevin did in fact have SCID and that we would need to bring him in for testing for a bone marrow transplant.
Kevin's first hospitalization was at the end of March. He had his transplant with Mark's bone marrow on April 22, 1993. He only stayed 3 days after the transplant as he did not under go the chemotherapy that cancer patients have to have, and that most other SCID babies had due to their following cancer protocols. At that time everything looked so positive! We were sure that by October Kevin would be able to return to a normal life.
However, Kevin got an intestinal virus that caused diarrhea, which prevented the absorption of the anti-rejection medication. This caused him to be admitted to the hospital where he developed GVH (graft vs host which meant that the newly transplanted bone marrow was attacking Kevin's body). What followed then was a series of hospitalizations that got longer each time, until the final one from which Kevin never came home. Every time Kevin's anti-rejection medication was lowered he got GVH and ended up back in the hospital, and back on high dose steroids. We spent every holiday (except Easter) and all of our birthdays in the hospital with Kevin. It seemed that Shands became more familiar than our own house.
But through all of it; the operations, the blood draws, the terrible tasting medications, and the hospitalizations, Kevin's spirit shined. He was a joy; smiling, laughing, hugging and being a little boy. He had a delightful sense of humor. He learned how to tease at a very young age, but not spitefully. He was so smart, and he loved books, especially the ones with moving parts, like pop-up or lift-the-flap books. He learned most of his colors and loved his crayons. He also loved for one of us to draw pictures for him and he would laugh and hand you the crayon color he wanted you to use. He loved building blocks, especially the towers his Opa, my father, used to build for his amusement at knocking down. He knew his shapes and could point them out in books and put them into his shape-sorter, but sometimes he would purposely pick up the square when you asked him for a circle and he would smile at you with a sideways smile, and laugh when you'd say "Now, Kevin you know that isn't a circle!".
He loved music. He learned how to blow a horn at 9 months, and loved playing the xylophone that Michele gave him for Easter. He loved his toy piano, but even more he loved my singing to him, especially at bedtime.
Kevin at EasterHe loved watching Barney and We Sing videos. He really got into Barney during his third hospitalization when a friend who has a son a month older than Kevin gave Kevin a stuffed Barney. That Barney slept with him every night from then on. Barney came to visit Kevin in the hospital, too, but he didn't get as excited as I thought he would. I guess at that age it isn't too amazing that a 6 foot tall purple dinosaur could walk into your bedroom.
Kevin loved his swing. When he outgrew his baby swing we bought a toddler swing at a garage sale. He loved that so much that when he was hospitalized in June we brought it to the hospital and hooked it up over the top of the crib so that he could swing there.
We always tried to make his room at the hospital as much like home as possible, bringing all of his favorite toys and books, much to the annoyance of some of the staff. However, the staff soon got used to us, and most of them couldn't help but fall in love with Kevin, who reciprocated with huge smiles when his favorite nurses would come into his room, and he would always wave "bye-bye" when they left.
He also had his favorite visitors. Betty Edwards brought me (or my parents, if they were staying with Kevin) lunch everyday that Kevin was in the hospital. Kevin would look forward to her coming as much as we would and would always look sad when she left and wave bye, (but usually after she had already left the room). Judy Clark often visited and "baby-sat" with Kevin several times while he was in the hospital so that I could get a break. Kevin really got to know Judy and though he was always a little mad when she'd first come (mostly because he probably knew that I'd be leaving him) he always was laughing when I returned.
He loved his two Grandmas. He had them both wrapped around his little finger. My Mom really had a strong bond with Kevin as she'd been with us for months at a time, even from the time of his birth. Kevin had certain books that he liked my Mom to read to him and some games he would only play with her. For Kevin, Mark's Mom was the one who played with the balloons and played peek-a-boo behind trees at the rare times he got to go outside.
He had special games that were reserved just for me and ones just for Daddy. He loved playing finger games with me, like itsy-bitsy spider and thumbkin. But Daddy was fun for giving high-five and blowing bubbles and being tossed up into the air.
Kevin knew how to relate to different people differently, and I was always amazed at how well he seemed to read people. There were some doctors that would come in and want to be all business, but Kevin would win them over with one of his smiles and one of his favorite "I'm going to impress you" tricks, like pointing out the butterflies or flowers on his puzzle blocks. After only a few visits those doctors would actually come into Kevin's room with a smile and a big greeting for him. Kevin never let anyone treat him as just another patient, and I never did either.
I can't help but smile when I think of Kevin and my arms feel so empty without him. Most people say to me that now that he has gone to heaven that he isn't suffering anymore, but they don't realize that he never did suffer. He was always surrounded by people that loved him and whom he loved, so even when he wasn't feeling well, there was always someone, if not me, there to comfort and hold him. Even his last two weeks, when we were aware that he might not make it, he didn't suffer much. We didn't let him. When we knew that there was no hope for him to live here on earth we chose to make him as comfortable as possible and to let his body decide when it had had enough. He waited until Mark's family could come to say good-bye, and he died November 22, 1993, in my arms with Mark's arms around us, with his grandparents and aunt present, surrounded by love.
Arlene E. Jacobs
© December 11, 1993What to Say When a Child Dies.
Parents Guide to Cord Blood Banking
