In The Beginning

I realized this morning that I have not given much background information about our family. I prefer to anonymize this post as much as possible in order to maintain our privacy so only mine and my husband's actual names are used. However, I think it important that you get to know us and how our family came to be.

It was my junior year of high school when I met my future husband, Buddy. He had just graduated and although we had attended the same school, we were not in the same circle of friends. He worked at a fast food restaurant in our hometown that my best friend and I frequented while out "cruising" as we called what is actually just driving around looking for something to do. One night, we invited him to hang out with us which he did. I realized immediately that I liked him. I got his phone number and called. Yes, I was quite forward back then. Hey, I knew what I liked and went after it! It took a few attempts but eventually I got hold of him. He asked me out. We dated my entire junior year and the summer before my senior year, I found out I was pregnant.

Having already given me a promise ring several months earlier, Buddy told me he wanted to go ahead and marry me. My parents were devastated. I, being only 17 and head-over-heels in love, was excited yet scared. We were married in a small church service ten days later. It was a no frills affair that was attended only by close friends and family. I did have a wedding dress, bouquet and cake. That was about as fancy as it got. However, we were married none-the-less.

I had chosen to continue school and started my senior year that fall. I even marched with the band and hid my very pregnant belly with an over sized uniform. Our daughter, Sissy, was born that winter of 1982. In the spring, I graduated on time and with honors. My husband, holding our infant daughter, cheered me on as I walked across the stage to receive my diploma.

I completed a few college courses while caring for our little girl as a stay at home mom. Although I had no clue what I wanted to major in, I took basic classes that would be required for any degree. When Sissy was 3 years old, we began trying for another baby. I wanted a son. It didn't take long and soon, I was pregnant.

When I was about 20 weeks along, Buddy's grandfather had a stroke and we drove to see him in the nursing home in a neighboring state. Buddy's mother had instructed us to go to his home and take his television back with us since he would not be needing it. On the way home, Sissy was sleeping on the floor next to the TV and I was sitting beside her. In those days, seat belts were not a requirement. Upon turning a corner, the TV toppled over and just before it hit Sissy, I was able to catch it and push it back upright. This TV was one of the large console varieties so doing this was no easy task, it took a considerable amount of strength. However, I could not let it hit my little girl so in my mind, there was no other option. Two days later, I began to leak amniotic fluid.

My doctor put me on bed rest, told me to call him when I went into labor and he would do a D&C. I was devastated. I could feel the baby moving around and was horrified to think it may not live. I agonized for two weeks as I lay in bed waiting for the cramping to begin. It never did. Finally, I was persuaded by family to seek a second opinion and thankfully, this new doctor agreed to take me on as a patient. He explained that because I had been so diligent in my bed rest that I had probably staved off miscarriage. He instructed me to remain on bed rest for the remainder of my pregnancy.

For ten weeks I got up only to use the bathroom and take a shower every other day. It was difficult but my grandmother had come to stay and help out with Sissy who was a very active 3 year old. When I was 30 weeks along, I began to experience some pain in my abdomen. A quick blood count revealed that I had amnionitis which is an infection in the amniotic fluid. A Cesarean section was necessary to protect the baby from getting the infection as well.

Shortly before Christmas 1985, B-man was born weighing 3 lbs, 3 oz and a mere 15 inches long. I could hold him in the palm of my hand. Immediately the doctors noted deformities; cleft lip and palate, extremely small head, low set ears, rocker bottom heels, simian crease in one of his palms, wide set eyes and flat nasal bridge and worst of all, a heart defect. They explained that one of these alone meant nothing but all of these combined probably meant some sort of chromosomal defect. Possibly Down Syndrome or Trisomy 13. The latter of which is incompatible with life beyond only a few weeks. Test were done and sent to the lab. Our heads swimming, we struggled to take in all of the information we were given. It changed from hour to hour as they discover more problems and irregularities. Buddy began calling our son's neonatologist The Grim Reaper because he never seemed to have any good news for us.

Days swirled into weeks and then months. B-man's condition roller coastered almost daily. He had surgery to correct his reflux and insert a tube into his stomach that he could be fed through since he had no suck due to his cleft lip and palate. A sonogram revealed a small bleed in his brain which we were told is quite common in preemies and he often needed a gentle reminder to breathe. But through it all, we soon realized that although the doctors kept telling us we would most likely never take him home, he was still alive and thriving despite their grim predictions. The chromosomal tests came back normal and the diagnosis became multiple congenital anomaly. This simply meant they really did not know what caused all of his problems. We never lost hope and we gently encouraged him to keep fighting with each of our twice daily visits. In the mornings, I arrived to feed and bathe B-man. I had asked the nurses to save his bath time and first feeding for me. At night we all went as a family and Sissy was able to see and even hold her baby brother. It was during these visits and watching the nurses work around all of the tubes and wires to lovingly feed and care for these tiny little patients that I realized I wanted to become a nurse. Nearly three months later, he was finally ready to come home. The question was, were we?

Nothing has ever been easy with B-man. Least of all his care. He was not home long before his temperature plummeted and he was hospitalized. Over the next 2 years, I actually lost count of all his hospitalizations. There were infections, seizures, feeding problems, surgeries to repair his cleft lip, then his cleft palate, place ear tubes, repair an intestinal malrotation and finally, one to repair his heart. That was the big one and he was given a less than 10% chance of survival. Less than a day later, he was off the ventilator and breathing on his own. His little heart beating steady and vital signs strong. The doctors were amazed and one even wrote in his chart, B-man is amazing. The nurses were so surprised by the entry they excitedly showed it to us saying, "This doctor never writes things like that". Once again, B-man had beaten the odds.

Then, slowly, B-man began having a longer span of time between illnesses. Soon, he appeared as healthy as most "normal" children. Although, he was still unable to tolerate a regular diet. I began a quest to prepare the most nutritious and tasteful modified pureed diet that I could create. Unfortunately, it was about this same time that Sissy began having large bruises appear on her legs. She had recently learned to ride a bicycle without training wheels so I attributed the bruises to her frequent falls. Her teacher called me and suggested I have her seen by the pediatrician because of the severity of the bruising. I complied and we were informed that although testing would be needed to confirm, the doctor highly suspected Idiopathic Thrombocytopenia Purpura better known as a low platelet count of unknown etiology. We would soon find out that the disorder and subsequent treatments were as complicated as it's name.

Sissy received high doses of steroids that caused her to swell, gain weight, become moody and have a voracious appetite. Other treatments caused migraines so bad we landed in the ER. She screamed during the bone marrow aspirations while we held her and tried our best to keep her calm. Her veins became non-existent due to over use and it took numerous attempts to place an IV line. She lost patience and yelled at the nurses as well as us. Our hearts broke each time we got the news that a treatment had failed. The only cure for this disorder is a bone marrow transplant, however, her hematologist did not feel she was at that point yet. Sissy did have a few remissions, some lasting a few weeks while others lasted a few months. It would be ten years before she gained a remission that lasted several years.

At 3 years old B-man, who by now was obviously severely physically and developmentally delayed, began a school program and so did I. After dropping him off at his class, I drove to our nearby community college and began working on taking all of the required classes for nursing school. It took several years but finally, I was eligible to apply for the nursing program. During that time, Buddy who had also been attending college classes after work, graduated with his Bachelor Degree in Business Management. Two years later, I received my Associate Degree of Nursing and passed the NCLEX exam which allowed me to become a Registered Nurse.

I worked at our local pediatric medical center until we moved to our current city six years ago. B-man remained relatively healthy until about four years ago when he began experiencing repeated respiratory infections. To date, Sissy is once again in remission after suffering an extremely resistant relapse shortly after the birth of her daughter. All of these events have served to both test as well as strengthen my faith. I have learned to take nothing for granted and enjoy each and every moment I am given with my family. Although our daughter remembers one very memorable "Maalox on the ceiling" moment, when our marriage was being tested, I feel that Buddy and I are stronger for all that we have been through together.

This brings us to the present. We are, for the most part, alone in our journey with B-man these days. Our parents are aging and unable to care for him any longer and Sissy now has her own family to manage. There isn't anyone else, just Buddy, B-man and I. We are no longer a couple, we are a trio. Happily, the three of us look forward to the future and the trials and blessings it will bring.