I was born on December 18, 1977 in a blizzard, my parents had a hard time getting to the hospital due to the weather and got stuck in a snowbank on the side of the road while my mother was in labor. Luckily, a police officer saw their car and went to check out what was going on. When he saw what was happening, he escorted them to the hospital and shortly after I came into the world. Later in life I realized this was foreshadowing my turbulent childhood and early adulthood.
Both of my parents were addicts to both alcohol and drugs, I learned early on that if I ever had children I did not want to parent as they did. They divorced after only 2 years of marriage when I was 6 months old, a huge stressor to their lives and marriage was that I was not growing as I should and at the time it was labeled as failure to thrive. They soon learned that I had cystic fibrosis, a genetic disease that affects the entire body but mainly the digestive and respiratory systems. In 1978 upon diagnosis they were told not to expect much and that most likely I would not live to go to kindergarten. I knew when I was about 3 years old that I would fight and beat the odds that I was given.
After my parents divorced my mother moved both of us into my grandparent’s house, it was probably the best thing that ever happened in my young life. My grandmother was like the real mother that I didn’t have, she was up early every day, cleaned the house constantly and fed me three square meals a day, I loved living there and she became my best friend over time, to this day I cannot express into words what she meant to me and the amazing and positive influence she had over my entire life as the years passed.
Unfortunately, we did not stay there for more than a few years, my mom got her associates degree in biology and my grandparents took care of me while my mom got clean and sober and got her life together. We moved more times than I care to remember, most of them being in shady neighborhoods, despite all of this I was a good student in school and generally an overall good kid. I was a cheerleader for the Sayreville Leprechauns pop warner football team for 3 years and I also took gymnastics on a weekly basis. I remained close to my grandparents (especially my grandmother) and I went to my dad’s every weekend, he also had moved back in with his parents.
I always remember having a fantastic time with my dad, things were different back then and every Friday night he took me to his favorite local bar, I very much enjoyed hanging out there with my dad and all of the regulars and the bartender always gave me free soda and snacks. I had no idea that this was not the normal but I honesty recall these memories fondly. My dad would have too much to drink and we would have deep conversations like I never had with anyone else ever, we grew extremely close. At closing time I would wake him up and we would walk home because his driver’s license was suspended. My paternal grandmother was a devout Catholic and 100% Irish and would always yell at him and tell me I could stay with her when he went to the bar but I always declined. My bar time with my dad was precious to me and even though it was wrong I remember those nights lovingly to this day. One of our other favorite things to do together was going to the movies, we went frequently and always had a blast, he allowed me to see movies that I was not allowed to see otherwise and I thought that he was the coolest guy in the world, I wanted to grow up and marry someone just like him. When I was young, I didn’t see any of his flaws, I only saw the loving and caring side of him, we joked around all of the time and I don’t really remember him ever yelling at me. He only hit me once and it was because we were in a clothing store in the mall and I hid in one of those old fashioned circular clothing racks and he called and called for me but I ignored it, I thought it was a game. When I finally came out he spanked me and I learned my lesson, I never again disobeyed my dad, I had too much love and respect for him. He was a very flawed individual but I would never change my experiences with him, they helped shape me to become the woman that I am today and I am immensely proud of her.
My mother remarried when I was about 10 years old, I never got along with my stepfather (Gordon), it was always his way or the highway. They married quickly as my mother became pregnant shortly after they began dating. The only good thing about Gordon in my eyes was that he fathered my brother and shortly after my sister, born exactly 13 months apart. My brother Michael came into the world on December 5, 1988 and my sister Mary on January 5, 1990. I resented my mom and Gordon because I was made to babysit almost around the clock while Gordon was at work and my mother was out partying and making bad decisions. The positive spin on this is that I got close to my young siblings and my childcare skills grew from knowing hardly anything about caring for children to honing my skills to where I knew what to do and when to do it. To this day I am very close to my siblings and talk to them at least weekly and we try to have frequent get togethers. My sister has 2 children now and one of them is Dove’s age, they have become fast friends and are favorite cousins. The skills learned in my early adolescence also helped me later in life when I became employed by a daycare and was sent to work in the infant center with babies ranging from ages 6 weeks to 18 months of age. The ratio was 4 infants/toddlers to 1 worker, to say it was a pressing job is an understatement. But I digress, the two homes that I recall the most are my grandparents house in Sayreville, NJ, they lived in a 3 story home that my grandfather put a lot of carpentry and craftsmanship into, he built the entire 3rd floor by himself, which consisted of two bedrooms and a huge walk through closet and attic. The house was in a residential development in a very friendly community on a dead end street, everyone knew everyone and the neighbors were always there to lend a hand if needed, I have wonderful memories of growing up in this house. The other home that I remember was a two-family home in the same town, we rented one side of the house and the other side was occupied by the owners, a family that we became very close to. We moved into this house when my sister Mary was a baby probably around 1991, I was in the 6th grade. The owners who lived in the other half had 3 sons, the oldest was 2 years younger than me, the middle was around 6 or 7 and the youngest was the same age as my brother, around the age of 2 or 3. It was a very nice house with 3 bedrooms and 4 stories, we all had enough room to exist as a family and live as peacefully as possible,
It was during this time when I learned of the Make A Wish Foundation, I was referred by my pediatric CF doctor and shortly after I received a phone call from one of the volunteers (who l still keep close contact with), she explained that I was approved and to start thinking of a wish, was this really happening? After a lot of thought I made my choice (it was between season tickets for the New York Giants or a trip to Hawaii), I chose Hawaii, mainly because the season tickets were nearly impossible to get (even for the Make A Wish Foundation) or it would take years. In the 7th grade we were picked up before dawn and taken to the airport in a limousine. It was myself, my mother, my best friend Tabitha and our landlord Patty. For the next 10 days we traveled first class and stayed in 5-star resorts; we went to Maui, Oahu and Hawaii, the big island plus the foundation had given us $5,000 in spending money. It was the trip of a lifetime and someday I would love to be able to go back with my family, it truly it a beautiful and magical place.
We remained in Sayreville until I was a sophomore in high school and then we moved into Gordon’s parent’s house in East Brunswick, a neighboring town when the money ran out. While attending East Brunswick High School I was on the field hockey team and continued cheerleading as well for both the high school wrestling and football teams.
By this point in my life I mainly leaned on my best friends, Tabitha and Dana, for support. I met Tabitha in the 4th grade and we have been best friends ever since, she is truly one of the only constants in my life. We both became friends with Dana in 10th grade and we also remain best friends to this day. Without these two amazing women in my life I do not know where I would be right now. They have given me the support that I was missing in my life at home and the 3 of us were there for each other no matter what and we still are.
Sadly, I lost my dad in 1991 when we were living in the 2-family house in Sayreville. This was a huge blow to my young life, I remember my paternal grandfather coming to our door with a panicked and shocked look on his face, I found it odd as I answered the door; I don’t think he was ever at our house before, it was always me going to visit them. By this time my dad had gotten his own apartment in Roselle Park with a bedroom specifically for me, which I thought was awesome and he let me decorate it however I wanted. I tried to say hi to my grandfather and talk to him but he had a very strange and faraway look in his eyes, all he could say was where is your mother? It was one of the rare times that everyone was home so I told him she was in the kitchen, he told me to stay in the living room or go up to my room, I knew something very bad had happened and somehow in my 13 year old brain I knew my life would be forever changed. I remained in the living room and about 5 minutes later he was gone, he could not look me in the eye or speak or even say good-bye. My mom came out with tears running down her face, I immediately began to cry too, that is when she said slowly and painfully that my father was no longer with us. At the time my mind didn’t allow me to process what she said and I kept saying what, what, over and over again, this time she was more direct with her words as she said Daddy is gone, he died. This made no sense to me as I had spoken to him only 2 days ago and everything was fine, we even talked about plans for the upcoming weekend and he seemed his normal happy self. The truth slowly sunk in without her even having to tell me, my father had committed suicide. I immediately went to my bedroom and locked the door, I called his phone number and his answering machine picked up, I got to hear his voice. I did this for the next 3 days constantly until my grandfather had his phone number disconnected. Suddenly I was forced into adulthood and I was never the same again. I still miss him dearly and as I write this tears are streaming down my face, no one really knows what happened or why, there are suspicions that he may have had HIV, my grandfather had gone to his apartment to take him to the doctor and found him and had immediately gone to our house to tell my mother who would in turn tell me. This was the infancy of the HIV/AIDS epidemic where hope was futile and the diagnosis was grim, I don’t know for sure if this was the case or not but regardless my wonderful and amazing father was gone from my life forever.
When I was 16 my mother went to rehab to try to kick her habit once again and met a man there who was there for the same reason. They ended up getting together and made plans to be together post rehab. She called me weekly when she was there and there was never any mention of anyone else, on our last weekly call she told me about the man (his name was Aladdin) and her desire to be with him and to divorce Gordon which I was okay with until she told me that their plans were to go to California and that I had to find someplace else to live. She had already spoken to Gordon about this and he was moving to his parent’s new home in Pennsylvania and taking my brother and sister with him. I was completely blindsided, I lived with a few friends for a while and even moved in with the Tripods (the family that owned the 2 family house that we used to live in) and then after all the turbulence and unsteadiness I moved back with my grandparents in Sayreville. Finally all of the drama and moving and nonsense was behind me, I was a junior in high school by this point and had managed to keep my grades up and was starting to look at colleges, I wanted to be a nurse. My Aunt Alice and Uncle Russ were always in my life and were always positive influences, they took me on all my college tours and helped me out with applications and essays. Early in my senior year I received an acceptance letter to Trenton State, which is now The College of NJ into their nursing program, I was ecstatic to say the least, I was going places in life, I was going to be someone who helped save lives, it was one of the best days of my life. As I had no money and my family had some but not a lot and definitely not any extra I had to apply for financial aid, instead of providing me with a student loan they offered me a summer program called EOF (Educational Opportunity Fund) to live on campus for the majority of the summer and take and pass 2 college courses. When this was completed I would majority be given a scholarship for the full 4 years of school, my essay was about my life up to this point and they saw potential in me and wanted to offer me the opportunity to succeed in life, I agreed to the program and just two days after my high school graduation I moved onto campus in Ewing, NJ. This was a remarkably interesting experience, when I arrived I had no idea what to expect, as a white woman I was for the first time in my life a minority. The program had a total of 4 white students and the remaining were African Americans, I must admit at first I was a little frightened and unsure of myself and everyone there. We all quickly became acclimated and were a very tight knit group of people, I grew close to my roommate and began an exercise and morning jogging routine with a few other students, each of us with our own unique stories and experiences from different walks of life. All the courses that we took were surrounded on history, racism and sexism, I learned a lot and wrote several essays and papers on these topics and earned exceedingly highmarks. The only complaint that I had was that the dorms were not air conditioned and it was one hot summer but also one that I would never change, again I was forever changed in my early adulthood from this experience, I truly learned first hand what it was like to be the minority and I was welcomed with open arms into the black community, it is a true shame that all people cannot do the same in this day and age.
I had started to date Tom by this time, our first date was August 6, 1996 after I had successfully completed the EOF program. Oddly enough we first ‘met’ in the seventh grade; it was the first day of school and we were both transferring in from other districts and neither of us had a class schedule, we sat in the guidance office the entire day as this is how long it took the school to sort our schedules out. We made a bit of small talk from what I remember but never in my wildest dreams did I think that this young man would eventually be my husband. Fast forward five years to the second term of senior year, January 1996, the first day back from winter break, everyone began their new electives and one of mine was cooking. I walked in late as usual and saw that the class was broken into table of 4, there was only one seat left and guess who’s table it was at? Yes, that’s right, Tom was one of the 3 people, I begrudgingly took the only remaining seat, I was not happy. By this time in my life I had become close friends with Tom’s sister, Kelly, and I did not have the greatest impression of Tom, he seemed like a quiet loner and to me that did not fit the friend mold. I was quite the opposite, very outgoing and I knew I did not want to sit at the same table as this guy for the whole second half of my senior year of high school. But as fate takes the wheel I started to see Tom in a whole new light, he was not a quiet loner, he was a very nice and fun guy as he slowly came out of his shell as time passed on and we started to joke around and get into trouble in cooking. I had never cooked therefore I had no idea what I was doing. Our teacher, Mrs. Borak, was explaining our task for the day and she kept emphasizing over and over that it was of the utmost importance to butter the bottom of the pan so I turned the pan upside down and buttered it and put it over the burning flame on the stove, almost immediately it started to smoke and smell terribly. Mrs. Borak came rushing over and I explained what happened. I will never forget what she said, “Never in my 30 years of teaching did I have a student who literally buttered the bottom of the pan!”. Everybody was cracking up laughing, including me and to this day it gets brought up at least twice yearly. Every once in a while when we had some downtime Mrs. Borak would chat with the students, one day in particular she was chatting with us and she told Tom and I that one day we would get married, we thought she was crazy, it is interesting that people can see things about yourself that you cannot. Tom and I even started to hang out as friends outside of school and our friendship grew stronger and closer as the weeks and months passed, we began to consider each other almost best friends and we hung out every opportunity that we could. When we graduated we left the parking lot together blasting ‘School’s Out’ by Alice Cooper, it was one of the most epic moments of my life, high school was over and I knew in 2 days I would be leaving for my college summer program.
One weekend when I came home from school I was hanging out with Kelly; her family was camping in Virginia and she was driving down to meet them in a couple of days. I do not know when it actually happened but over the summer I began to realize that I had strong feelings for Tom but I was afraid to make a move because I did not want to ruin the beautiful friendship that we had begun. After much consideration I wrote a letter for Kelly to give to Tom expressing my feelings and asking him if he would like to go on a date, the next few days I was anxious and stressed and I questioned my decision it seemed on an hourly basis. Then it happened, a postcard came to my grandparent’s house from Tom, it was a normal postcard talking about camping adventures and other mundane things but at the bottom was the word YES circled. I could hardly wait for him to come home; on our first date we saw ‘The Brady Bunch Sequel’ and the rest is history.
We had our ups and downs as all couples do but I soon realized that there was more to him than meets the eye and he was special; our relationship was special. When I was a child starting around age 7 I would have to go into the hospital every year for what they called a tune-up which is basically IV antibiotics along with nebulizers and chest physical therapy to loosen up the thick mucus which is one of the main parts of having cystic fibrosis. Tom would come visit me nearly daily, all of my previous boyfriends were either scared off by my having cystic fibrosis or were extremely awkward when I would talk about, which I did freely and continue to do so to this day. I refused to silence myself when it came to my genetic illness, I wanted people to know upfront that I had it and all that it entailed so that if anyone was not cool with it I could kick them to the proverbial curb. Tom actually wanted to know more about it and asked me many questions, that is when I knew that this guy might be the one. When he visited me in the hospital we would play games and be silly together and laugh for hours, he made my long and boring hospital stays go quickly and he would always bring me there when it was time for admission and pick me up when it was time for me to go home.
As time passed I began attending college and living on campus, it was during these years that I realized that I did not want to be attached to anyone and after much consideration I made the choice to break up with him. I did it over the phone one night which was in retrospect not the best decision but during these times it was difficult for him to come and see me as he now had a full time job and the drive to visit me was over an hour. I felt that I did not want to regret anything, I have always had a free-spirited attitude, especially during my teens and early twenties. I joined a sorority and had lots of friends and a very full social life, now that I was single I had the freedom to do what I wanted, when I wanted with no one to answer to. Although I had moved around frequently throughout my childhood and young adulthood this was the first time that I had a roommate and a sorority house full of sisters. I always believed that everything happens for a reason and things that are meant to be will work out in the end and I knew when I came home I would see Tom frequently, especially since his sister was one of my best friends, if it was meant to be it would happen. Right before beginning my third year of nursing school I had a very serious talk with my CF doctor at the time, she warned me that the majority of nursing options would not be a good career choice for me due to my CF and my high risk of getting an infection, she said research would be my best option. I had my heart set on something fast paced and exciting, I wanted a career where each day was different and unexpected, I wanted to be an ER nurse or something to that extent. Her words echoed through me like a hollow emptiness, I now knew that my dream of becoming a nurse would not come to fruition and I made the incredibly difficult decision to leave college and return home to my grandparent’s house.
Upon my return home Tom and I began to date again (meant to be) and I got a job at the aforementioned day-care center, it was a difficult but wonderfully fulfilling job taking care of infants but the hourly wage was ridiculous, at the time I believe I was making $5.25/hour. The job was tiresome and strenuous not to mention important, we were taking care of tiny babies, after my first year or so of working there I decided to ask for a raise and was immediately told no, after some serious consideration I decided to write an editorial and submit it to all of the local newspapers on the travesty of the situation. I walked again into the main office a few days later and told them of my intentions, well wouldn’t you know it as soon as I got back to the infant center the phone rang and it was for me, it was one of the owners, I could not believe it, the owners never spoke to the lowly childcare workers. They begged me not to submit my editorial and I refused, I knew that they could not fire me for doing what I planned to do. I worked on the editorial for days and I thoroughly enjoyed it as I have always loved to write, aside from nursing writing would be my dream job. I submitted it to three local but widely read newspapers and it was picked up by one of them! I got to see my name in print and all the injustices of being a day care worker were right there, in black and white. Nothing changed but I was proud of myself for following through against adversity, a trait that I try to hold onto. I worked there for another year or so and then I got my real estate license and quit.
Tom and I remained a couple through all of this and he was immensely proud of my newspaper editorial and encouraged me through all my endeavors, he still encourages me to follow my dream and start writing again. We grew closer and closer and he asked me to marry him on my 22nd birthday, we did not have much money at the time as most 22 year olds don’t so he got me a dozen long stemmed red roses and put his mother’s first engagement ring from his dad inside one of the roses. I was speechless and immediately accepted.
Real estate was a bust and I did not enjoy it at all, I found an ad for a receptionist at a software company, so I applied and was interviewed. As soon as I got home from the interview I got a call offering me the job, I was so excited, my first real job that could turn into a career! As Tom and I continued to work we started to save money and began to plan our wedding, I still have my wedding planning notebook as it is very sentimental to me. With help from his parents we had the perfect wedding in my eyes, it was at a Polish hall and bar, we had roughly 80 guests and it was very informal and fun. We married on September 20, 2002 and have come through some of the most difficult obstacles that anyone couple could go through, especially at such young ages. I began working at the software company (SHI) on May 15, 2000 and worked my way from reception to order entry clerk to inside sales to outside sales as a business development manager. The sales jobs were demanding but I loved it, when I was in inside sales I worked for the State of Texas Government team and each year we got to go to Austin for one week for a conference, it was always such a blast and Austin is an extremely amazing and fun city with so much to do, the motto is ‘Keep Austin Weird’ and it is certainly fitting. After the Texas Team I went to work for the International Team inside sales team which is where my SHI career really started to take off. I started working from 6AM-3PM due to the time difference and although this was difficult to get used to (I lived over an hour away from headquarters) I loved learning the different rules of international business and my sales skills only improved. During this time period Tom and I had purchased our first home in New Jersey and stayed there for 5 years and then relocated to Pennsylvania due to the rising costs of living in New Jersey. It was after we moved to our 2nd home that I was promoted to business development manager which was an outside sales position, I could not believe it, I had started out answering phones and sorting mail to being in outside sales, one of the highest positions in the company, which was also growing rapidly. The promotion required that we relocate to the United Kingdom which Tom and I discussed in great detail. I had started to see a new CF doctor as my childhood doctor retired, my CF was still under control but as I entered adulthood it started to worsen as it typically does. I had to be admitted to the hospital several times for exacerbations (severe lung congestion) on top of my yearly tune ups and we were concerned about the kind of care that I would receive if we moved to the UK especially because we were unsure of how socialized medicine worked. I had several conversations with colleagues who lived there and they helped me out with a lot of research, we discovered that there was a quite famous CF clinic in London. On top of this along with a huge raise in salary, plane tickets paid for, work visa and a visitor passport for Tom and a $10K allotment for moving we were on board and set to move to England in September of 2008. What an exciting time in our young lives, we were only 29 years old and about to embark on an amazing adventure, if only we knew what was really in store for us.
The job was fantastic but much more demanding than I had originally realized, I was hardly ever home and Tom had to apply for jobs but it was during the recession and residents of the UK were unable to find employment, no less an American. We had to do everything super quickly when we arrived, SHI put us up in a hotel (Jury’s Inn) for 2 weeks, the room was tiny and we were literally living out of suitcases, I had to walk to work daily as the office was only a few blocks from the hotel but it was getting harder and harder to breathe but in my typical stubborn fashion no one knew, I could have won an academy award for my ‘healthy’ performance. We had one week to find a place to live so we hired a ‘relocation expert’ a fun-loving woman named Sue Myrie. She was kind but a bit on the odd side, her fee as we discussed prior to hiring her was 6,000 pounds which at the time converted to nearly $12,000! She said that she did everything, from finding us a home to getting our utilities, cable etc. set up and also that she would do her best to help Tom find a job, it seemed a bit pricey but we had to beat the proverbial clock. Our initial meeting after hiring her was at a casual restaurant and after we ate she only paid for her food, which we both found extremely odd as her fee was so large. We house hunted for 3 days from early morning to the evening and must have seen about 45 houses or apartments, we decided we wanted a house with a nice big garden (backyard) as our dogs would be joining us in 3 months after the rabies quarantine was over (there are no rabies in the UK so the process of moving animals from the US is tedious and expensive). She started to show us homes in our budget and it felt like we were in her car constantly, at one time she was chatting away (as always) and not paying attention to the road and a motorcyclist pulled up and was in the lane beside us, Sue went to switch lanes and she nearly hit him without even knowing, I was in the back seat next to him and he had to take his hand and hit the window so that she would stop. One day it took her about 20 minutes to do a K-turn, to say being with her for those 3 days was an adventure was an understatement and to boot Tommy had an extremely difficult time understanding what anyone said because of their accents. We finally found a home and quickly moved in, I think I was given 1 day off to move all of our things from the hotel to the house and we were also expecting our furniture to be delivered once it came over and was cleared through customs. In the meantime we had to sleep on a half deflated blow up mattress in an empty house for weeks but business does not stop for anyone. I was expected to meet clients weekly which meant I had to fly a minimum of three times/week to other countries, this was amazing although stressful as I got to see Switzerland, The Netherlands, France, Spain and Germany quite frequently, the Autobahn is amazing by the way. As soon as we were set up in our new house we contacted the CF clinic in London and they gave me an appointment 6 months away, at home in the US I saw my doctor a minimum of once every 2 months. We immediately saw the pros and cons of socialized medicine; I had no choice but to wait it out. I soon learned firsthand that all of the constant flying was not good for my lungs, all of the same stale pressurized air was hurting me, I remember barely being able to walk off of the planes and through the airport to the taxi stations but again I was a hell of a good actress. This went on for months, me being gone frequently and Tom being stuck home alone, the saving grace was when our 2 dogs and our belongings arrived and it finally felt like a true home. We made plans to go home for Easter and surprise everyone, Tom was going to go 4 days prior as I had work functions to attend and business to take care of before I could leave. We sent the dogs to a kennel and Tom made me promise to pooper scoop the garden before I left and alas I did not, I figured that we would both be back in a week so really what was the difference and the dogs had already been picked up by the kennel they would be staying at since neither Tom nor I drove while in the UK. By this time I was feeling beyond horrible and people started to take notice, I had dropped a considerable amount of weight and my once peach colored skin had started to look and somber grey.
When I arrived home my family and friends were unable to hide their shock at my appearance, I simply said that I had been burning the candle at both ends and had serious jetlag from my 8 hour flight and I would be fine after a good night’s sleep. No one believed me. The entire week I stayed in the basement of Kelly’s house and was sick as a dog, Tommy and the rest of my family begged me to go to the hospital but I refused, my appointment at the CF clinic in London was two days after we returned so I tried my hardest to wait it out. The day before we were set to go ‘home’ I decided that flying was a terrible idea and I finally admitted to both myself and everyone else that I was indeed very sick and needed to get to the emergency room. Tommy drove me (my hero) and when we got there I was immediately brought back even though it was packed, my oxygen saturation was only in the 70’s and I was admitted, given strong IV antibiotics and had to be on oxygen via nasal canula, my weight was only 85 pounds. The doctor said that if I had gotten on the plane I most likely would have died and there was no way that they were allowing me to leave the hospital and go back to the UK as planned. I was devastated, the reality of it all came crashing on top of me like concrete raindrops. I ended up being in the hospital for 4 weeks and during the first 2 they were not sure if I was even going to make it. I had to contact my job and tell them that I was unable to return, ever. Once I was in the clear Tom returned to sort out everything, getting out of our house rental, arranging for the dogs (who were still at the kennel) to fly back to the US, having all of our utilities and cable switched off and unfortunately he had to sell the majority of our belongings as transporting them back would cost thousands of dollars and all of the new things that we had purchased there (TV, DVD player, computer and all electronics) had the power cords for Europe so they would be useless in the States. He did this all with his sister Kelly who agreed to go along with him to help for the five-day impromptu trip. On top of all of this we had also received a letter at our house that we were being fined because several of the neighbors (neighbours) had lodged complaints with the local police because of all of the dog feces in the yard and it was smelling up the area, oops, my bad. Never a dull moment.
When I was released and well enough we moved back into our home in Pennsylvania and I was able to continue my job from home. As much as I tried to deny it again, my health was failing. My CF doctor told me that he had done all that he could do and he referred me to the University of Pennsylvania and told me my only option for a better life was double lung transplantation. I was too sick to work and had to quit my amazing job after 11 years and I was placed on the UNOS list for transplant in June of 2011, I was approved for permanent disability and Medicare at the age of 33, I could not believe that my life had come to this. All I could do was lay in bed and watch TV and movies or read, cystic fibrosis was knocking hard on my door but I refused to answer, I knew that my perfect new lungs would eventually come and my will to live and fight were so much stronger than CF. After over 2 years of this with numerous hospitalizations along the way I got that call, they had lungs for me that were a perfect match! I tried not to get too excited as I know that many people experience dry runs which is where you get a call and arrive at the hospital only to find out that during all of the testing that needs to be done on the prospective lungs that something is wrong with them. I called Tommy at work and he came home, I already had a bag packed so off we went and made calls to family and friends on the way. Everyone that we called met us at the hospital and the waiting began, to say that it was emotional would be a massive understatement. After hours my main transplant doctor (Dr. Ahya) came in and said it’s a go, they gave me antibacterial soap to apply to my chest and wheeled me away to the operating room, the good byes to my family and friends was almost more than I could take, if something went wrong this would be the last time that I see them. I went to the operating room where there was a frenzy of people (40 or so) doing many different things, one person’s job was to give me a calming drug through my IV and simply talk to me. A few hours later I was finally put under anesthesia and all went black. I woke up after it was all over feeling very confused and in more pain than I ever was which is saying a lot. As the days went by things got easier and the day came when they took out my breathing tube, for the first time in years I took a deep breath, it was truly a miracle my eyes filled with tears. My recovery was extremely successful and I was discharged only 13 days after my transplant, there were a few bumps in the road during the first year post op which is very common and from that point out it was smooth sailing, my life was back, I was able to do physical things again including exercise and food shopping. The only main difference is that I had to take 90 pills per day for the first 3 months and it gradually decreased to around 40.
It was during this period that Tom and I decided to become foster to adopt parents, we had decided long ago that we did not want to have children on our own because we did not want to pass my cystic fibrosis onto our children but we did want to have children eventually. We went through the KidsPeace training program and not long after we got a call for a child that we accepted; a 3-year-old boy named DJ. It was wonderful having him and he was a great child, we thought we were going to be able to adopt him but after 2 years he was returned to his biological mother. It was a heartbreaking experience and after a 6-month break, we decided to give it another shot. That is when we got a call and the child was Dove who we are now in the process of adopting after over 3 years. I enjoy being a stay at home mother as I am no longer able to physical work due to my compromised immune system and my husband is a practice manager for several doctor’s offices. Dove has chores and rules that she must follow as we know the importance of structure and consistency, I as well know this from my own childhood. She can be stubborn at times and does test our patience but under it all she is truly a loving child who is only looking for unconditional love and support, which we give to her. Since she has been with us, she has been involved in numerous activities including dance and gymnastics as well as being in a full-time summer camp program that includes karate each summer where she has made friends and sincerely enjoys attending. When rules are broken we use natural consequences as much as possible and if not we will remove a privilege such as television, her bicycle, etc. and she must earn them back with good behavior. We also try and use positive parenting and praise as much as we can to reinforce her good choices. She has come an exceptionally long way since coming to live with us and I cannot emphasize how proud I am of her and I cannot wait until the day where she is legally our daughter.
I have lived through a lot, aside from having a double lung transplant in 2013 I also had a single lung transplant in 2017 due to rejection. I am a strong woman and a fighter who does not nor will not ever give up. Some of this may seem fabricated but it is all 100% true, I plan on writing a novel one day that is loosely based off my life.
We have an extraordinarily strong support system of family and friends, including Tom’s parents, his sister Kelly, my brother and sister, my cousin Sandy and her husband JP among many others, all of whom Dove knows well, trusts and most importantly, loves.
I have been asked more times than I can remember how or why I never gave up; the answer is easy. I am on this Earth for a reason, many reasons and my work here is not done. I am a volunteer for the Gift of Life House in Philadelphia and in the future I plan on doing public speaking to help others and make them realize that transplant truly can change your life in an amazing and positive way. I have been called inspirational and have helped others that I have met along my journey to see that there is much more goodness in life than bad and positivity always beats negativity. This is what I hope to pass onto Dove, a bad situation can turn into a good one, hope is always there and always have a good attitude, the past is in the past and your future is up to you and you can be anything you want in this world, the sky is the limit.
She is the sunshine of my life and I will be there for her every day for the rest of my life, I would not have it any other way. One thing we say frequently to each other is I love you to the moon and back.
The only disability is a bad attitude.
