Jennifer’s Life Story, by Tana, Jen's Mother. Jennifer’s life began in Loma Linda Hospital on July 16, 1988. Although the doctors said it was gas, Jennifer smiled on her first day, which was just the start of many more smiles to come. She was a happy baby & her pediatrician said she had a “pleasant disposition”. The only thing that seemed wrong was that she was jaundiced. Because the jaundice didn’t go away, many tests were done to see what the problem was. At 3 months old, she had major surgery & was diagnosed with biliary atresia, a rare liver disorder. Her bile ducts were not formed properly & so Steve & Tana found out she would need a liver transplant. They were given a pager & waited & prayed, along with friends & family who would continue praying all during Jennifer’s lifetime. During the 12 months that Jennifer waited for a “new” or should I say “used” liver, she developed pretty normally, even early in many areas. She started teething the first 2 weeks after she was born. Formula started soon afterwards. Jennifer crawled early, then tried walking. She said words like “daddy” & “mommy”, not dada or mama & “more, please” & “baby”. One of the last things she said to Tana was “baby?”, as she pointed to a teenage boy in the hospital bed next to her, Tana had to smile & say no, that wasn’t a baby. Jennifer really liked her brother, Zack, although he was still getting used to her at first. She would try to follow him around the house & get into his room, which Zack did not like one bit. She loved her big brother “Zacky” & would light up when he came into the room. During this time, Jennifer had many doctor’s appointments & tests. She was hospitalized so she could start TPN, which is complete nutrition given through an IV. While in the hospital, Steve & Tana took 2 weeks of classes to learn how to hook Jen up to the IV at night. One of their fondest memories is when Jennifer would reach her little finger through the crib railing & flick a plastic cover on the IV pump. They slept in the same room, so Steve & Tana could hear her do this throughout the night. Flick, flick, flick….. Jennifer ate baby food at this time & some of her favorites were sweet potatoes, carrots & peaches. She also liked to put small pebbles in her mouth, just to try them out. From the very beginning, Jennifer had many nicknames: Smiley, Smiles, Schmooch, Smoochie, Smoocher, Smoochette, Jen-o-Ben, Jenner Benner, Jenner-Boo, Jenner-Poo, Jenner-Schmoo, Jennifer-Juniper, Sweetie, Sweetie Pie, Sweet Pea, Sweet Cheeks, Sweet Lips, Kissy Lips, Honey Bunny, Poochie & last but not least, Stinky. As she neared her 1st birthday, Jennifer’s body resembled a malnourished baby from a third world country. When Tana would take her to the store, they would get a few stares, which was just a taste of what would come later. Jennifer was very yellow, so that only added to the puzzled looks. Who knew what people were thinking! Tana told herself that all of this was what she felt the Lord say to her heart before Jennifer was born - “different” was the word, & even at this point it seemed to fit. Before Jennifer was 15 months old, she became more ill & was hospitalized. After awhile, she was put into observation where she had a major bleeding episode, common to end stage liver disease. So a balloon was inserted into her abdomen to stop the bleeding. Her liver pretty much stopped working while they waited to see if a liver would become available. When a liver finally became available, it was not an exact blood-type match. This wasn’t usually done then, but it was better than the alternative. The surgery took a very long time. Steve & Tana waited 18 hours until they heard the news that the surgery went well. They were so relieved. The very next day, though, Jennifer’s brain became swollen & bled. Since her liver stopped working, she became very toxic, which led to the brain damage. The doctors said the thing that saved her was the soft spot on top of her head. She would not have survived otherwise. They were told she was in a coma & were asked to make a decision about life support, which meant keeping her on a ventilator so she would continue breathing. You know, God is gracious, because at this heartbreaking hour He gave Tana a picture of Him holding Jennifer in His arms like a lamb. They didn’t want to take her off the ventilator, but it was clear she was in a good place & at the time it seemed like all the reasons they wanted her here were only selfish ones. So they decided in their hearts to let her go. But God & Jen had other plans. Before the ventilator was taken off, they found out she would be okay without it. That type of decision was one they prayed they would not have to make again during Jennifer’s lifetime, but if so, the decision would most probably be different, knowing how things turned out. Jennifer was still in a semi-coma when Tana prayed, “Lord, just let us know she’s okay.” Jennifer started smiling again soon afterwards. Jennifer was showing how strong she could be, like the Bible says in II Corinthians 12:9&10, “"My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” Jennifer stayed at UCLA for over a month & was then transferred to Children’s Hospital in LA where she went through rehab to see what she could do. This included physical, occupational & speech therapy. She had custom splints made for her hands, elbows, legs & feet, because she was very rigid. They found out Jennifer was having seizures, so she was started on more medications. She was never totally seizure free for the rest of her life & was also taking meds to keep her body from rejecting her transplanted liver. Jennifer also had a G-tube that was used for feeding, which went directly into her stomach. At first her body became bloated from the prednisone medication, but that was eventually taken off & the puffiness subsided. She had extra hair on her face, arms & legs & her gums were swollen. The hardest part to accept for Steve & Tana was the cortical blindness, but it seemed like Jennifer could see some things & she often looked right at you & tracked your movement. . Physically, Jennifer had very much changed. So when it was time for her to come home from the hospital, the realization of how different things would be was hard to adjust to at first. Now God’s word “different” really seemed to fit. It took some time to get used to this new way of life. Soon everything became normal for the family, but it wasn’t typical for most other families. Jennifer still went for physical & occupational therapy, but ultimately they would say that she was not making progress so the sessions were stopped. All of the negatives didn’t deter Steve & Tana from trying to get the best care for Jennifer. Her fight was their fight. As long as she kept trying, they would too. The main thing, though, was that Jennifer was still with them, a miracle in itself. During this time, the Seuferts were living in a remote area in the Angeles National Forest, so it was very hard to get nursing help. Thankfully, Juanita Macias, thought Jen was cute & would relieve Tana for awhile during the day. Juanita stayed with Jennifer for 19 years, until the family moved to Oxnard. At age 3 Jennifer had hip surgery on both hips because she was so spastic that her leg bones partially came out of the hip sockets. She was in a body cast that went from her stomach to her knees, with a bar going across her legs. It was interesting picking her up. Thankfully, the stiffness subsided, so she didn’t have any more problems with that. About this time the family moved to Palmdale where Jennifer attended a specialized pre-school with Tana. She mainly slept through these classes. When special ed started, Jennifer didn’t think that was anything special, so she continued to sleep. So a teacher tried coming to the house, but Jennifer didn’t seem interested. School & Jennifer didn’t work out, she had her own schedule. Besides, she was busy trying to be the teacher. When Jennifer was about 5, the family moved to Lancaster where they would stay for 15 years. During most of this time, Jennifer was relatively healthy. There were many doctors visits, but she was only hospitalized for some dental work, for having her tonsils & adnoids removed, surgery for an ear infection & for some pneumonias. As time went on, some added medical attention was needed, like suctioning, then intermittent oxygen. Jennifer had scoliosis, so new body braces were needed as she grew, too. Still, the family did some normal things with Jennifer like going shopping, going on outings, taking vacations to San Francisco & San Diego & camping at Morro Bay & Ventura. Jennifer eventually started doing more things like turning her head a little. Her feet became more sensitive, so you could tickle them. She became better at looking in the right direction & she laughed, sometimes for a good part of the day. She would also grimace, even cry in her wheelchair, but as soon as she was picked up, she would smile. So much a part of Jennifer’s life was her medical care. Besides her pediatrician, Jennifer had other doctors to visit - gastroenterologists, neurologists & orthopedists. During the last several years, her medical condition became even more complicated. Gradually new doctors needed to be added for her care - ear, nose & throat, throat specialists, pulmonologists, nephrologists, hematologists & at times an ear specialist, allergist, dermatologist, urologists, infectious disease & eye specialists. Her kidneys weren’t functioning as well as they used to & in 2008, Jennifer was hospitalized with pneumonia and a tracheostomy was done. That was a hard decision for Steve & Tana and they would miss hearing her cute sighs & laughs. For most of the first half of that year, Jennifer was in and out of the hospital. As her kidney function became less because of all the years of anti-rejection medication for the liver, her body became swollen. Perhaps the highlight of early that year was when Jen got a helicopter ride during a beautiful sunset when she was transferred to UCLA hospital. During the second part of that year, it seemed like God was saying it was time to move. So the family moved to Oxnard near Pt. Mugu, where they liked to camp. The moister, saltier air suited Jennifer’s trach. A bigger house was also needed for the growing amount of equipment that was used - an oxygen machine, oxygen tanks, suction machines, a compressor, a nebulizer, a hospital bed, and lots of different medical supplies. Steve asked the doctors & they thought it seemed logical & were willing to write a prescription for a house in Oxnard, but they doubted the insurance company would authorize it. The family moved anyway in November of last year. In April of this year, Jennifer went back into the hospital for 7 months. Tana said that Jennifer was trying to cover all the holidays, birthdays & anniversaries that she missed in the hospital the year before. There was even more change in Jennifer’s condition. They tried putting in a J-tube along with a G-tube to feed Jennifer because she wasn’t keeping things down. Many, many tests & procedures where done. She was put back on prednisone & became bloated again. Jennifer’s kidneys worsened & there was talk of dialysis, but there was some debate over whether to even try it. So in June, Tana drafted a letter to read to the doctors, nurses, social worker & ethics person in an effort to continue the best medical treatment for Jennifer. Here is that letter: What Jennifer means to us, her parents, is much different than someone who sees only her physical body. She is our daughter, and she is a sister, niece, cousin & friend to people who love her. She is an extra special person, not just because of her disabilities, but in spite of them. She isn’t like most people, but this is in the best of ways. By explaining how remarkable Jennifer is will help in understanding why her life is so valuable. Although, isn’t any life valuable? Certainly there isn’t any distinction in our minds. It is because of who she is that makes Jennifer truly extraordinary. One of her many nicknames even today is “Smiley”. Even after her transplant & subsequent brain damage, she still smiles…..a lot, she even laughs. Her personality still shines through. You can have the absolute worst day, and then you look over at Jennifer, laying in her bed, unable to do anything for herself & she is smiling. You think to yourself, my troubles aren’t that bad. If she can still smile, after all that she has been through, then maybe I need to look at what I think is so terrible & reevaluate. My troubles are never as bad as I initially thought. Jennifer contributes to society or the world we live in by being a great teacher, but you have to be paying attention. She is not a lecturer, of course, but someone who simply teaches by example. She is someone who usually never complains & even tolerates pain well. Jennifer has never hurt anyone by her own actions, something you can’t say about almost everyone. Jennifer enjoys the simple things in life – being talked to; having all the attention; a bath; a shampoo; getting her diaper changed; back, shoulder & foot rubs; stretching; kisses; hugs; the beginning of a car ride; high voices; music & feeling well. She seems to never take these things for granted. Jennifer expresses contentment, joy, surprise, satisfaction & happiness & you can tell when she is listening. She also communicates discomfort & pain, but she is a fighter. She has gone through many tough, life threatening situations. Each time she has hung in there, fought & recovered. Some people say a successful person is someone who can give much love & someone who can receive much love, so I say that Jennifer is a very successful person. It is not something you can easily describe, this love. Although we have been told by strangers that they could tell that Jennifer is very much loved, and Jennifer is a loving daughter. I guess it is somewhat inexplicable because it is a feeling between people, like all love relationships, & it is special. We know, though, that Jennifer knows we love her & we feel her love back. You might think it is a one way street, but it definitely is not. Joy & love are a big part of Jennifer’s life, which is the kind of quality of life that some people can only try to achieve. Jennifer has made us better people simply by being herself. She inspires us to be even better, more like herself. Jennifer makes the world a nicer place to be & we feel blessed to have her in our lives. She has attained what most people only hope to find. She is loved no matter what she can or cannot do, whether or not she smiles or does any of the cute things we cherish. Whatever care Jennifer needs at home is not a burden; it’s only a matter of logistics. We will do whatever we can for her until she lets us know that her body has had enough. That time may be sooner than what we would want, but we are more than willing to go the distance with her & give her a chance as long as she continues to fight. You see, we love her unconditionally. If you don’t agree that a life like this is worth trying to save, then we would just appreciate it if you would treat Jennifer with dignity, and respect her life & right to life. We ask that you would simply do what you would for any able-bodied & able-minded person who wants the best medical care. Lastly, we hope that Jennifer’s life has inspired you to at least take a good look at a disabled person & know that they have feelings & a personality, even if that can’t be fully expressed, & know that their life matters. This letter, through emails being forwarded & shared, was read by hundreds of people. Jennifer was an inspiration to many. After Jennifer turned 21 in July, she was moved to an adult floor at UCLA & by September, Jennifer was started on dialysis. Jennifer didn’t have any infections for awhile, so Steve, Tana & everyone at UCLA worked to get Jen out of the hospital. A major problem was getting a dialysis center to take Jennifer because of her trach. Most dialysis centers do not take people with trachs. In an answer to prayer, they found a place in Simi Valley & an ambulance was set up to take them there. So Jennifer was discharged in early November & came home for 3 wonderful weeks that were filled with smiling. Jennifer was happy to be home! These were precious weeks that will not be forgotten. Jennifer came home with added equipment, an IPV machine, a ventilator & an IV pump for the TPN nutrition that Jennifer was back on. Steve & Tana were also taking dialysis classes Monday through Friday. Jennifer was to start dialysis at home the day before Thanksgiving. But again, God & Jennifer had other plans. On November 21st, Steve & Tana took Jen to the ER at UCLA where she almost didn’t make it through the night. She had pneumonia, sepsis-an infection in her blood, acidosis, & extremely high blood sugar. (Tana said she was just too sweet.) At first the antibiotics looked like they were effective, but after awhile the doctors said the antibiotics weren’t working and there wasn’t anything else to try. Jennifer was on constant dialysis, a ventilator, TPN & many IV meds. She was made comfortable, but no decisions about taking her off any machines had to be made. Her liver was also not working and she rapidly became jaundiced. It seemed like things had come full circle. You know, it wasn’t just for those pictures that Jennifer was smiling. She could smile for most of the day. She could smile so much that Steve & Tana wondered how Jennifer’s cheeks could hold out for that long. When Jennifer didn’t have any medical issues, she was smiling. She would also laugh so much that her shoulders would shake. Even when you wouldn’t think she would be feeling up to it, she would give you a smile. Even to lab techs, hospital care-partners, radiologists, respiratory therapists, nurses & doctors! Okay, maybe not as much to them. You see, even though it may not be theologically correct, it seemed like Jennifer was an angel inside a human body. A lot of the time those two things just didn’t mesh very well. Jennifer was very special, not in a disabled kind of way, but in a human way. She was an especially happy influence to those close to her. When she was smiling, you just couldn’t help but smile too, no matter what kind of mood you were in. Even if she wasn’t smiling, just looking at Jennifer, knowing that she had such a great disposition through all of her many challenges, you couldn’t help but feel better, uplifted. A couple of days before Jennifer passed on, she started squeezing Tana’s hand, which she never did before. It was like saying, “I love you.” She opened her eyes more than she had been in the previous days & she gave them a few smiles to let them know she was okay. God answered all the prayers Steve & Tana had prayed for over the years about how Jennifer’s passing on would go. Jennifer was in their arms & they were holding her hands. They were able to whisper all the things they wanted to say to her. Jennifer went peacefully from this earth & looked just like she was sleeping. After Jennifer passed on, the hospital chaplain came in & prayed this prayer. Prayer for Jennifer Jennifer, we your family, your loved ones care about you. We love you and we wish you well, but God has other grand and better plans for you. As we watched you suffer and in pain, we could only wish and pray that a miracle happen before our very eyes in this very room, that you be restored to the soundness of health. But we also believe that there are limits to what we can do, to what medicine can do. We believe that there is more to physical earthly life, we believe that there is an afterlife, we believe that we came from God, the Creator and we will someday return to Him. He is our final destiny. In the end, all of creation goes back to Him. If you feel like God is asking you to come home, to join Him in his place of quiet, peace and joy, we would understand if you go with Him. We know you will be in the best place one could ever be. We know you will be in the best of company. We recognize that the will of God may not be our will. Our minds are limited to understand His thoughts and His ways. We express our trust and faith in Him who knows what is best for us. We would understand if you leave us to spend your next life with Him. You don’t have to worry about us. We promise you that we will stay together, help one another, care for each other, and keep the values you have shown us. Your inspiration will keep us going in this journey of life. We hope to be the best family and friends you can be proud of. Rest your body now, free yourself of the pain and suffering you have endured, live in peace in the bosom of the Almighty God, enjoy the deep sense of quiet in the lap of the Good Shepherd. Go forth from this world in the name of God who created you. Welcome home, Jennifer! Dear God, we commend to you at this very moment our dear Jennifer, your beloved daughter, and entrust her to You. This is the right time You designed for her departure from this life and with faith and trust, we offer her to you. We know that you are with us in our joys, pains, hopes and struggles. We know you have taken her to the best place she could ever be. Reward her good deeds with life eternal in Your Presence. Reward her faith with joy and peace. Amen. What Jennifer would want you to know is that only because of a loving Saviour, who held her close all of her life, was she able to weather the many storms that came her way. It was only because of Him that she could be brave & strong. And only because of Him was she able to enjoy life & smile through it all. The God that is with Jennifer & still holds her, the God that can keep you, the Only One Who makes everything all right is here today to say His arms are outstretched for you. Accept His embrace, His forgiveness, His mercy & love. May you know Jesus Christ as your own personal loving Saviour.