“I was the kind of girl who knew what I wanted to accomplish in my life. I had a plan and I was going to make it happen. I was going to graduate high school, go to college, develop my career, get married, and start a family – in that order. My plan was perfect, and by the age of 28, I had accomplished everything on the list. I had earned a Bachelor of Business Administration in Marketing, I was working for a large marketing and distribution company, and I was married and expecting my first child. What I didn’t realize, was my life was about to change forever.
On February 28, 2005, I was exactly 26 weeks pregnant with my daughter, Emily Rose (who was named after her great grandmother). Like any other day, I woke up, got ready for work, and went about my day. After work, my husband and I sat on the couch and I soon dozed off, for what seemed like only minutes. When I awoke, I was shocked to find my pants were wet. At first, I thought I had an embarrassing accident, which seemed like the only logical explanation. Unfortunately, it did not take long for me to realize it was not an accident. After calling my doctor, I learned the fluid was likely amniotic, and I needed to go to the hospital to be examined.
After a long, excruciating night in the ER, it was clear my amniotic sack had ruptured, and my daughter’s life was in danger. I was admitted to the hospital for the duration of my pregnancy and ordered to bed-rest. While in the hospital, I had all sorts of emotions – fear, depression, anger, sadness, and guilt. I convinced myself to stay positive and strong for my daughter. I prayed, I journaled, and I followed doctors’ orders. I did everything in my power to protect my baby girl.
After two weeks in the hospital, I learned I had developed an infection of my placenta. I was told Emily would have to be delivered to prevent her from becoming infected as well. The fear and anxiety associated with the unknown was overwhelming, but I had no choice – I had to save her life. Emily was born at 1:54 a.m. on March 17, 2005. She was 2 lbs, 9 oz and 15 inches long. She was so small my husband’s wedding band fit around her tiny wrist.
It is difficult to describe how I felt. It was almost like an out-of-body experience. It didn’t seem real. I was absolutely terrified when I first saw her in the Neonatal Intensive Care Unit (NICU). There were wires hooked up to machines and devices, all monitoring every breath she took. She was crying, but I could not hear her over the sounds of the breathing machine. My first instinct was to pick her up and sooth her, but I couldn’t. I was quickly told by nurses I could not even rub her skin, because it was underdeveloped and she would have extreme sensitivity to touch. I felt helpless, and even though I was surrounded by family, I felt completely alone. No one could understand what I was going through. The more people tried to relate, the more frustrated I became.
Emily spent seven weeks in the NICU. During that time, I was numb. I experienced the worst moments of my life in that place. I witnessed the death of other children, experienced countless moments of uncertainty, witnessed a mother abandon her child, and learned my daughter had a brain injury called periventricular leukomalacia, which would ultimately result in a future diagnosis of Cerebral Palsy.
If that wasn’t enough, with each day, it became more and more evident my marriage was not going to survive this horrific ordeal. Within nine months of discharge, I resigned from my job, Emily was officially diagnosed with Cerebral Palsy, I got divorced from my husband, and I moved back in with my parents as a single mom with a special needs child. I was depressed, overwhelmed, and unsure of what my future held.
Over the next several years, Emily received several new diagnoses including optic nerve damage, nystagmus, esotropia, sleep apnea, GERD, anxiety, cyclical vomiting, scoliosis, dystonia, and the list goes on. Our lives consisted of therapy, doctors’ appointments, and more therapy. It was tough, but one thing always remained my number one priority: Emily’s happiness.
As the years went on, and I became more immersed within the special needs community, I started to notice things I had not seen before. I realized the people I was meeting during my journey with Emily brought kindness, beauty, love, and light into my life. Medical providers and therapists showed us true compassion and care. My family relationships became stronger. Strangers would often approach us and provide us with kinds words, religious tokens, and some even anonymously paid for our meals while dining out.
I met parents and children who changed the way I looked at the world. I realized although my mission was to make sure Emily was happy, she was doing the same for me. She was changing my perspective on the world. Things that were once important no longer seemed of value. People I did not see before, were suddenly becoming the light in my life. I found pure joy in seeing Emily’s beautiful smile and hearing her infectious laugh.
When Emily was four years old and enrolled in school, I decided to go back to work. I found a part-time office manager job with a small company providing fitness training services to individuals who had been disabled, due to auto accidents and occupational hazards. This job allowed me to give back to those like Emily. It helped me gain my confidence back and develop my professional skills, while helping people in the special needs community.
In 2010, my life took a drastic turn when I purchased my own home and met an amazing man who would change my life. Stephen and I had a one of those whirlwind relationships – I think we both knew from the beginning we would be together forever. He loved me for who I was, and never thought twice about welcoming Emily into his life with open arms. He was also divorced, and the father of a 4-year-old girl named Annie. I still remember the day Annie and Emily first met. They were instantly connected and acted as if they were sisters right away. Emily loved seeing Annie, and Annie (although a year younger) took the role of big sister – reading her stories, talking to others on Emily’s behalf, and protecting her from any negativity in the world. We were all a match made in heaven.
Stephen and I quickly married. We made a fantastic team, and although our life was complicated, messy, and difficult at times, we had an amazing ability to support one another in everything we did. He was a great father and did more for Emily than I could have ever imagined or expected from anyone. Emily developed a very special relationship with her ‘Hi Steve,’ as she called him.
In 2011, we learned we would be having a baby boy in October. Due to the traumatic conditions surrounding Emily’s birth, my pregnancy was considered high-risk. This meant the doctors ran additional tests, including an internal ultrasound. While receiving this test, I learned I had a rare condition called vasa previa. It basically meant exposed blood vessels crossed the opening of the uterus. If I were to go into labor and those blood vessels ruptured, my son and I would bleed out within minutes. Due to the severity of this life-threatening condition, I was hospitalized on July 31st and was to remain there on bed-rest for the duration of my pregnancy.
This was obviously devastating news, and a very difficult challenge to navigate, considering I was now separated from my family and my husband was home dealing with everything on his own. All the same feelings instantly came rushing back – fear, anxiety, depression, helplessness, etc. However, this time was different. Those feelings were quickly replaced with feelings of gratitude. I was thankful this time, I had a loving husband who supported me in every way.
It was a rough 60 days, but on September 25, 2011, Tyler was born 5 weeks premature. He spent one week in the hospital and was released as a perfectly healthy little boy, weighing 5 lbs 5 oz. Stephen and I were eternally grateful the traumatic birth I experienced with Emily lead to the discovery of my condition, and ultimately to our survival. It was truly divine intervention.
Many things have changed over the years. The small fitness training company I was working for is now a full-service physical therapy and rehabilitation company, servicing 130 patients, where I am now serving as the company president. Stephen became a Dean of Students at a middle school and is managing disciplinary issues. Annie is in 8th grade, preparing to enter high school. Tyler is a very energetic, kindhearted 8-year-old. And Emily is almost 15, and continues to rely on us for all activities of daily living.
She is mostly nonverbal and struggles with severe anxiety. Transfers now require a Hoyer lift, and we have invested tens of thousands of dollars to modify our home for her needs. I have come to terms with the fact Emily will never walk, talk, or play like other kids. When life gets tough, my husband and I remind ourselves of the primary goal – to be happy. We know happiness is something we can control through our choice to be positive and present.
When I reflect on the years before Emily, I cannot help but be thankful for everything God has given me. I cannot help but be thankful for Emily coming into my life. I cannot help but be thankful Emily is exactly as she is. I realize many people will not understand that statement, but she has taught me so much about life and how to be a better mother, wife, daughter, and sibling. She has shown me the true meaning in life. She has shown me beauty in things I avoided in the past. She saved me from myself, and showed me the way towards true love and happiness. I will be forever grateful to her for filling my life with love and light.”
This story was submitted to Love What Matters by Kim Duda from Washington, Michigan. You can follow her journey on Facebook or on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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