America Home Today

Jensen Family Our Story

Dear America,

  After seeing you on a recent episode, expressing your desire in helping a family, I knew I had to contact you. My daughter, Melissa has one of the most incredible stories to be told- one of heartache, happiness, and triumph. Although the account of her children is set to be published in the National Journal of Medicine and Genetics, and have graced the cover of our local newspaper, hers is not a tale many know. Melissa has been very careful in her dealings with the public eye, as to not demand attention, or as she says pity. However, with having said that, she is always delighted to share her story and the reason her girls are so “special” to both young and old alike. She from day one has set out to treat and show each of her children and the people around her that there is diversity in this world, and that there is absolutely no shame in that.  To begin, Melissa is my 30 year old daughter who graduated a year early with honors and a scholarship; after marrying her high school sweetheart, they began a life together in the USMC. Only a year later, she was ecstatic in knowing she was pregnant- always wanting to be a mom. Her husband was deployed to Italy at the time and I accompanied her to an ultrasound in which we hoped to learn the sex. We left with heavy hearts, tear stained cheeks and instructions to have an amniocentesis performed at the hospital. Here we learned the fate of who we discovered would be our Bailey, Melissa’s little girl, my first grand child.  Melissa unknowingly, has a balanced chromosome translocation numbers 1 and 5- something that is uncommon but certainly not unheard of. Everything is there essentially, just in the wrong place; in other words her # 1 and number 5 chromosomes simply switched places.  After extensive testing we were told that Bailey had such a unique chromosome translocation and that she is in fact, the only known case. She, unlike her mom, has a missing piece of her #1 chromosome, and an extra piece of her #5. This combination has not produced a single living child, so expectations that Melissa were to carry full term were grim. I remember one doctor even going as far as suggesting abortion, suggesting “it” would not have more than a vegetative short few weeks anyhow. Clearly, that was not an option for any of us, and at six months Melissa put on a smile and boldly carried through the remaining three months of pregnancy. I should mention, we were also told that the baby had a severe case of hydrocephalus, (water on the brain), schizencephaly, and was missing her corpus collosum, (or the middle part of the brain). Just two weeks early, and via natural child birth, this baby girl entered our world. The following morning, they were sent home to enjoy the precious moments they were given, until she passed.  Against all odds, Bailey did spend those moments with her family. Moments became years, nine to be precise. Come September, she will celebrate her tenth birthday! Though Bailey has endured trials most of us will never experience in our lifetime, she is here- and that is the miracle in all this. Doctors, geneticists, neurologists have been amazed at her will to survive. Developmentally that of a two month old, unable to walk, talk, sit up or even smile. Relying on daily medications and oxygen at times to help ease her daughters bouts with epilepsy as well as tube feeding and diapering, an occasional glance at a monitor to help reassure breathing is where it should be- this is a typical day in Melissa’s shoes. Cerebral Palsy and Scoliosis have also burdened Bailey, but she is at her best when she is sitting proud in her wheelchair, where she can observe all that goes on around her. Countless holidays, events, day’s evenings, weeks and months have been spent at Bailey’s bedside throughout her short life at the wonderful PCMC and McKay Dee Hospitals. Several operations have been performed to help her windblown hips, a neurological conclusion, to no avail, but she is very comfortable. Bailey, without argument is one of the most beautiful, blissful, children one will ever meet. She attends school and adores her teachers and has several friends who are always chanting that it is their turn to sit next to Bailey or push her through the halls. She is happiest spending time on mom’s lap, listening to stories or music, watching the commotion caused by her brothers, petting her puppy, and therapy! Often times, people comment, “For someone that is unable to speak, she has a way of capturing people, and her spirit reaches out and speaks to you.” That is what makes her mom get through some days, that and the hope that one day she will smile!  Melissa also has two very rambunctious, bright, healthy boys. Gunner is five and a very sweet, affectionate boy; Always the first to help feed or push Bailey. He loves to tell anyone that shows a slight hint of curiosity, the story of his sisters.  Her four year old Corbin is always right in step with that brother of his; he too is thrilled when the opportunity presents itself so that he can explain that “his sisters don’t have brains!” Oh, the times we have gently corrected him, reminding him that they do in fact have brains, only a piece is missing. As much as Gunner delivers affection, Corbin delivers the humor. That kid will do things just to get a stranger in his vicinity to laugh! Their mom laughs as she says how much harder they are as opposed to her girls. She is so accustomed to rushing blue, seizing babies to the hospital- not bloody boys needing stitches and a cast, due to rough housing with the neighbor children! How she craves those moments in watching the boys experience the simplicities in life, starting quite literally from birth- rolling over, smiling, crawling, eating, walking, talking, dancing, T-ball... The list is long. Motherhood to Melissa, is so sacred, such a gift that she is sure to never take advantage of. Finally, there is Tabitha- three in June. Unbelievably, she shares the exact same diagnosis as her big sister. Doctors have actually said they would not know one medical report from the other without the names attached. In addition, I should mention that Tabitha is also missing her fourth ventricle and has hydrocephalus, and was born with a cleft palate that was repaired shortly after birth.  She is extremely small at only 18 pounds; hard to imagine she will have the opportunity to attend preschool at the Deaf and Blind school in a few months. Like of Bailey, she has had numerous hospital admits, follow ups, surgeries and is on her daily medications, oxygen and monitors as well. These girls are reminiscent of one another, like twins, only seven years apart! Isn’t it ironic that both the girls have been affected, neither boy? Geneticists say it has nothing to do with X Y’s just the “luck of the draw.” Tabitha is very excited, we suspect, because she just got her very own wheelchair. It is a miniature version of Bailey’s, and what fun it is to see the two of them parked next to one another viewing this whole new world! When Tabitha was just six months old, her dad decided after ten years of marriage that he was no longer in love and moved out. At the time, Melissa thought her world was coming to an end. There were many times she called me sobbing and asking how she can fix her marriage, and if she couldn’t how was she going to make it? How was she going to live and be a mom (to four kids, two of which have severe special needs), all she has ever been since having children? Somehow, she pushed along and made ends meet, despite the struggle in leading a life of normalcy and setting motherhood as her only priority. Nearly three years later, Melissa is a different person; stronger, happier, more positive than ever before. She ran with the idea that what doesn’t kill you, makes you stronger and that everything happens for a reason, life is too short- do not take advantage of the small things. One of her favorite sayings is “Just for today, be happy!” Without a doubt, Melissa is the most driven, courageous, optimistic, encouraging, Woman I have ever known! I am certain that after meeting her, you will feel the same.  I have had the opportunity to meet with several of Melissa’s neighbors, family, friends, therapists, teachers, and doctors alike- they all unite and simply sum her up to be “the mom we all strive to be.” Dannie, one of Melissa’s closest friends says, “She is very patient and she is the last one to complain. The two words that come to mind when I think of Melissa is ‘long suffering’.” Lindsay is like a sister to Melissa, they are so close.  She went on to say “I see Melissa as a diligent, fun loving, extraordinary person. The level of trials she has had to endure is immeasurable, but you always see her with a smile on her face. One would never know the destitution she has faced just by looking at her. When I first met Melissa, she made a statement that captivated me. She said, ‘My boys will never miss an opportunity to play baseball, go to swimming or any activity that a child deserves because it is too hard for me to pack up the girls. And, my girls will never miss the same opportunities because of their disabilities. You have to not think about it and just do it!’ Melissa has inspired me to be a better mom and in my eyes, she is amazing!” Dr. Allred and his staff are also astonished by her. “She takes such good care of those girls. What amazes me is how she maintains such a normal life for her boys, the girls, as well as herself. Melissa is the only one I know that could handle this situation.  She would give you the shirt off her back if she knew you needed it. Things were really thought out when Melissa had her kids because we feel, we know, she is the only one that could do this with such happiness and normalcy. We are honored to know her and her special children.” Even the kids’ teachers have remarked, “She is a saint, always the first to help volunteer her time or services. Her plate is so full, she has more to deal with than most of us, but never misses an opportunity to involve herself in the happenings of her children.” Furthermore, “Those kids always look so adorable, hair done perfectly, cute clothes, clean and well kept. I can’t keep up with that and I only have two kids- who are healthy at that!” As you can see, Melissa has many friends that think the world of her, as they should. Melissa in turn always has something wonderful to say about any of us.  Melissa has at long last, fallen in love. Ryan worked for a company that focused on individuals with special needs, or disabilities become more independent in there homes, as well as modified and rented out equipment such as wheelchairs, or bath chairs etc. He has been in the health field for more than ten years and has a passion of his own for children like our girls. They met one afternoon when Ryan came to look at a porch lift for the wheelchairs. He stayed and talked over four hours, about anything and everything and they had this undeniable chemistry that we all took notice of. Her kids adore him, as he does them. He is the first to wipe Bailey’s slobbery mouth, or to get her off the bus, pull Tabitha’s meds for her, load her in her car seat, does all the lifting of the girls when he’s there, gosh I could go on and on. The boys idolize him, and why wouldn’t they? Ryan plays catch with them, hasn’t missed a T-ball game, takes them on bike rides, wrestles and on top of it all has helped with some discipline, and as us parents know- kids need that. Ryan does have a darling seven year old daughter, Kaitlyn, whom Melissa is particularly fond of. It has been really enjoyable for her to watch Kaitlyn dance or play dolls, the things that she has been unable to experience with her own daughters. In addition, Ryan has two sweet little boys- Noah and Cole. Melissa has always, for as long as I can remember wanted this huge family, and with a family of nine, she unquestionably has gotten just that! Fortunately for the two of them, things have fallen into place, things have worked out for them and they do have this wonderful family, this relationship that most of us hope to find before our time is through. I can think of no two individuals, not another couple who are more justifiable than Ryan and Melissa to find this bliss together. They do intend to get married, and all of their kiddos are the first to mention, “Hey, did you know this is going to be my step dad one day?” and “Mom, when are you and Ryan going to get married?”  I know in my heart that one day Ryan and Melissa will marry to complete this happy family. With that in marriage comes a whole other loved set of children. The 1300 sq. ft. house will suddenly take on an even a smaller feel. With the girls needing to have a ground floor bedroom, and the boys in a finished basement bedroom, things get amazingly hectic. To increase the turmoil even more, there is but one bathroom. For a family this size it can be frustrating as the line grows at the bathroom door. Melissa has often tried to figure out a way to incorporate a bathroom in the unfinished portion of the basement; the plumbing works are visible to the cement floor. However, as a much needed home mother, and provider, the income is just not there to allow the finances of hiring out plumbers and finishers. In the ten years of raising children, Melissa has yet to take the children on any type of vacation at all, money and limits on transportation always being an issue. What a piece of Heaven it must feel like to other families that can slip away to a retreat from all the reminders of the daily stress at home. This family has taken a few trips to Salt Lake City and local areas but the van in which she needs to transport my two granddaughters just is not feasible to consider anything further, and at times doesn’t even want to putter up the hill to Primary Children’s when needed. What cripples her even further now is the price of the barrel of oil, and how it affects gas. Furthermore, this van is shared between both Melissa and her ex, as it is equipped to tie down the one wheelchair. I know in the future, Melissa hopes to somehow purchase a van of her own and one that has a way to tie down not only the one chair, but the second as well. This way, she would never need to worry about the care of the van while in the procession of her ex husband on his time spent with the kids. I am sure you can now see how this just keeps adding up to a 24/7 monopoly. We have all tried to dream of a way to make this mother bring a comforting home life style to these beautiful angels who deserve what comforts they can understand. With the girls growing in size, and requirements, so does the amount of room that is essential for the equipment which sustains their lives. This does not even touch on the boys who though very healthy, and rambunctious in their own right, are hindered by the necessities of this home. As the boys grow, their needs will also increase as the maturity sets in. A larger home, or making a miracle come true in giving this remarkable family the additions they need, is what I pray for everyday. I do hope in some way, in your heart you can look into this family, talk with Melissa, her neighbors, and the children, see how deserving they are, then reach out help them as they reaching out to those who will listen.