John Lennon (Beatles) wrote a song for his son called, "Beautiful Boy," and one of the lyrics says, "Life is what happens while we're making other plans." I truly believe that "Life is what happens while GOD is making other plans!" I always thought that, because I was a Believer, and because I was close to God daily, that my life would have its ups and downs, but it would be relatively calm and put together. Boy, was I wrong! 3 years ago, my son became the poster child for what happens when you surround yourself with the wrong people! He was into all kinds of bad and ended up being arrested for a juvenile felony and sent away for 10 months, including his entire Jr. year of high school. He was arrested in our living room... on my birthday! I battled the devil daily during that time. How did this happen? How did my family get to this point? What had I done wrong? The guilt was overwhelming, and I would wake myself up in the middle of the night, literally crying out to God for peace and understanding. I was certain this was the lowest point of my life. Wrong again!
Fast forward 3 years to this past Thanksgiving when my husband of 20 years told me he was leaving. Yes, we had our struggles, and no, I am not faultless in this, but I truly never knew that leaving was an option...for him or me! I was devastated. Once again, I found myself waking in the middle of the night, literally crying out to God. Navigating this experience has been even worse than the one before. He didn't actually move out for 6 weeks after he told me. That was like waiting for the other shoe to drop. Then there was the night he told our kids. My heart broke for them. They didn't understand or know how to handle it any better than I did.
When my son went to JRC, a dear friend of mine gave me a devotional book titled: Jesus Calling; Finding Peace in His Presence, by Sarah Young. I had never been spoken to through a devotional book like I was this one! It was truly like being in the presence of the almighty God when I opened that book. Everyday's reading seemed tailored just for me! What made it mean even more to me, was the fact that the friend who gave it to me, was given the book when she embarked on her journey to becoming a breast cancer survivor! She literally passed her copy on to me and I knew if that book got her through the darkest hours of her life, it would get me through mine. And it has. When my husband moved out, I got back into that devotional book for the 2nd time and let it wash God's mercy and grace over me with each day's reading. If you are struggling to find peace, I strongly recommend this book.
God has so many ways of reminding us that He's near. Music speaks to my heart, and when my husband left, there was a song that I kept hearing on my Christian radio station by Danny Gokey called, "Tell My Heart To Beat Again." The chorus says this:
Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again
That was God speaking loud and clear to me! I have to make a conscious choice every day to walk in the light of God's grace, and some days it's been really, really hard, because a part of me just wants to wallow in my grief. But I know that while I was planning my life, God had other plans, and He promises me in Jeremiah, that His plans are for me to prosper, that he gives me hope, and He knows my future! Praise the Lord!
2 Corinthians 12:9—But he said to me, “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.
This verse pretty much sums up my life…
I was very blessed to have grown up in a Christian home with a godly family, a Christian education, and life in the church. I accepted Christ into my heart when I was five. Throughout the years, I continued to grow. I dealt with a few “growing pains” and struggles in my teen years, and I didn’t have much of a desire or passion to grow more spiritually. I was going through the motions. When I was a senior in high school, preparing for graduation and post-high school, the events of one night changed the course of the rest of my life, and God was going to use that for his glory.
One evening I experienced the symptoms of a brain hemorrhage. Miraculously, my dad, who is a surgeon and had an understanding of this from his studies, was at home at this time and knew what was happening. He was able to rush me to the hospital and I was able to get the treatment, surgery, rehab, and care I needed.
Life could never go back to the “same.” I had to regain my ability to walk, talk normally, and even swallow regular food and drinks. At first, my mind and body were in power save mode. I did what I had to. As a few days went by, I began to question my future, my abilities and new limitations. Would I be able to graduate with my class in a few months? If not, I had no desire to graduate later, and I was not going to let somebody wheel me across the stage. (I have always had a stubborn personality, and you could say it has been both a blessing and a curse.)
God provided for me medically, with wonderful doctors, successful surgeries, and being able to regain the important abilities needed for a normal lifestyle. God allowed me to graduate with my class, but from that season on, life followed a different course than I had previously imagined.
Through this event and beyond, I have seen the importance of the Body of Christ. God definitely used other friends, believers, and those in the church to minister to my family and me. From notes of encouragement to cooked meals to visits to arranging car rides, I saw the beauty of the church- the body of Christ- from around the world. God also ministered to me through Christian music. Reading was not always enjoyable to me earlier, so I loved listening to music. I found messages in the lyrics that pointed me to Scripture.
Over time, I have continued to grow and heal. I am so thankful to be where I am now. I obtained my degree from the community college here and have had the opportunity to work full-time. God has provided for me, physically, spiritually, and emotionally, and I want to grow to be more like Him.
This is where 2 Corinthians 12:9 comes in. I am nothing without Christ. Through my weakness, He shines through. I always need God to be my strength; I am learning to be dependent on Him. It’s an ongoing process; I am still learning and growing. But I know God has been faithful, and I can trust that his faithfulness will continue.
It was February 6, a morning like any other morning with two toddlers running around. I was 6 weeks pregnant, tired, nauseous, and I will spare you the rest. I was scheduled for a routine ultrasound that morning, although it was early on in the pregnancy. I was under the care of a high risk doctor due to previous symptoms in all of my pregnancies. Because I had these symptoms before, then had 2 two healthy babies, I wasn't too concerned about my appointment. Little did I know that the appointment would change my life.
As I laid on the ultrasound table, my mom and my children present, I began to notice the ultrasound technician’s demeanor was changing as she went from friendly and chatting to quiet in a matter of a second. I could sense the worry, concern, and sadness all over her as she turned the screen more towards herself and away from me. She continued to take pictures quietly, and when she was finished, she said, “I need to get the doctor. We will be right back in”. I knew in this very moment that something was wrong, very wrong. The doctor and the technician came back into the room, reviewed the ultrasound pictures, and not much to my surprise after sensing the technician’s worry, the doctor told me that I was in the process of having a miscarriage.
I laid there in disbelief for a minute, holding back the tears as I didn't want to let loose in front of everyone. Once the initial shock set in, I started asking a few questions regarding my blood tests, hormone levels, etc. As the doctor began to review my blood results, they noticed that my hormone levels were rising compared to the first labs and they were slightly puzzled. However, they assured me that there wasn't a baby (fetus) present, no obvious heartbeat, no fetal pole, and no yolk sac (please refer to the results pic on the next page if you are a skeptic, like myself). Once they had convinced me that I was having a miscarriage and there wasn't a baby, they began to give me my options, I could have a D&C that afternoon so I would have the weekend to recover, or I could rest over the weekend and let my body naturally do what it is supposed to do. If I chose this, they would see me the following week to make sure no infections were setting in. In that moment I couldn't think; my mind was reeling, my heart hurting, and all I really wanted to do go home, hold onto my other two babies, and cry. That’s exactly what I did. I decided to wait the weekend and let mother nature take its course. I do not really remember the car ride home other than having my mother make the devastating phone call to my husband and dad. As I walked into the house, I remember my husband and dad hugging me as I finally broke into tears. AlI remember saying is, “I am ok with whatever God wants for this baby and myself.”
Did I really mean that? Let’s be honest for a moment - no woman who desires to have children ever wants to lose one. But this was the beginning to an amazing journey that God had for me and my little one.
It was Tuesday of the following week when I had my follow-up appointment, and there was still no evidence that I had physically passed my baby. Anxiousness had set in and I needed some closure. I had two very active toddlers that needed their mom back to her normal self. After chatting with the doctors, they decided to do another ultrasound before sending me in for a D&C. Once again, I was laying on the table while the ultrasound tech took pictures, screen still out of view given the circumstances. After a few moments of screening, the technician proceeded to tell me she needed to get the doctor. I thought, “What now?” As the doctor was standing between me and the technician, he turned the screen towards me and said, “I am not sure what went wrong or what we missed, but look at this!” The technician turned the volume up, and I heard a heartbeat! I thought it was my own, but then he said, “Look at the screen!” Much to my surprise, there was a baby with a beating heart. In that moment everything seemed to stand still. The doctor and the technician were completely baffled and trying to understand what they missed, how they missed it, etc. In all honesty, I wasn't concerned about the technicalities at this point. I was amazed, excited, and yet still nervous about the outcome still looming. I was informed that although there was a heart beat, the heart rate was on the lower end and I still wasn't out of the “woods”. They would need to see me in two weeks for another ultrasound.
Let’s fast forward roughly 7.5 months, to September 22. I woke up early to labor contractions, and I decided to get moving and make sure that this was the “real deal”. It was only about 35 minutes after arriving at the hospital that I gave birth to a beautiful 6 pound baby girl. You can imagine the joy in this mother’s heart, especially given the circumstances at the beginning of this pregnancy. All was right in the world as I held her in my arms. As we were thinking of a name that would be fitting for this beautiful baby, we decided on Olivia Grace. We chose her middle name due to the grace that was shown to her and I early on in her life. Little did we know what still lied ahead of us.
It was a normal morning with a 3.5 yr old, 2 yr old, and a 4 week old, until my phone rang; it was our pediatrician. The nurse was calling to give me the results of Olivia’s newborn screening test. The test results had come back abnormal. The nurse informed me that I needed to make sure I was feeding her every two hours, not to let her fast longer than 4 hours or she could go comatose and/or die. The blood results indicated she could have a metabolic/mitochondrial disease, and they were not able to handle her case any further. They had set up an appointment with a pediatric geneticist in downtown Cleveland. Our appointment was scheduled about two weeks out, so you can only imagine what kind of stress we were all under until that day.
When the anxiously awaited appointment arrived, I needed answers. I am a person who plans; I do not like the unknown. This situation was starting to get the best of me. The geneticist came out and greeted us in the waiting room. We were one step closer to finding out what was wrong with our beautiful baby girl. As the geneticist opened Olivia’s chart and reviewed her records she informed us that Olivia has Medium-chain acyl-CoA dehydrogenase deficiency (MCADD), and they would need to process her DNA to confirm the results of the newborn screening to be accurate. Obviously, I am giving you the brief description of the visit. I literally left there feeling as if the doctor spoke to me in a language I have never heard before, let alone able to comprehend.
Once the DNA results came back, it was confirmed that Olivia has MCADD. If I may be honest with you I was still clinging onto a strand of hope that it was a false positive on the newborn screen (false positives do happen), the doctor would tell us that everything was fine, and we would go about our life the way I had envisioned. But God had a different plan. I would be lying if I told you that I wasn't disheartened and that my faith was stronger than ever. It was quite opposite; my heart was very heavy, it felt like my world was falling apart and my faith was being rocked to its core. As a mother I needed to comfort, nurture, and take away anything that was not intended good for my children. In that moment, though, I didn't know how to do any of the above.
After the initial shock from hearing the news that I had a baby with a rare genetic disease, there was so much I needed to do: multiple appointments with the geneticist, pediatrician, lab work, dietitians/nutritionists, putting together a emergency care plan, educating myself, our families, and friends about MCADD and Olivia’s needs to ensure that she would continue to thrive and grow as best as she could. Although this was overwhelming, I am so grateful we have such an amazing team of doctors who have worked together for the greater good of Olivia and myself. At the end of this letter I will add a link for you to visit so you are able to learn more about MCADD and what it means for those living with this disease. Essentially, MCADD is the inability to break down medium chain fats. When the body can not break down these fats for energy the way that it is supposed to during times of fasting or illness, the body begins to eat away at the fat and enzymes that the liver and brain need to function. This, in turn, can cause a MCADD patient to go comatose due to the liver causing fluctuations in blood sugar, and the possibility of physical/cognitive delays, and/or death.
Once we learned all that we could about MCADD, we were sent home to care for our little girl: feedings every two hours for at least 18 months, every 4 hours thereafter. If she were to become ill (fever, diarrhea, vomiting, etc,), or if she was just simply not wanting to eat, we immediately had to call our genetics team and they would give us a fast pass to our very own hospital room where IV’s would be administered upon arrival and we would stay for at least 24-48 hours or until Olivia was eating normally and no symptoms of illness persisted. The first few years were exhausting to say the least, I now realize how terrible sleep deprivation is for one’s body. The exhaustion was setting in physically, mentally, and emotionally for the both of us.
Fast forward nine years, three hospital admittances, multiple ER observations, who knows how many doctor’s appointments, and an unfathomable amount of prayers -
we have a thriving, energetic, beautiful, full-of-life young lady who is a superb student in school, plays sports, plays the violin and piano, and excels in math. As her mother, I could not be happier. I am so thankful that God has protected her and allowed her to grow and develop as she should in spite of MCADD. Although she is doing well, she still fights this disease on a daily basis. She gets tired quicker than most kids, and we have to be cautious taking her places during the height of flu/cold season. As she engages in daily activities, her routine is different than most. Unfortunately, it is a sad truth that not everyone living with a rare disease has the same outcome as Olivia, and that is why we are sharing our story.
We know God is all-powerful and strengthens us daily. Prayers for Olivia as she walks on the path that God has called her on!