Survivor Of… Leukemia, the heartbreak of losing two foster children, and the everyday battle of understanding life with her biological infant son diagnosed with the terminal genetic disorder RCDP- and still she resides in the sufficiency of God’s all-powerful love and grace, through it all…
Do you ever have moments in life when you stop and look around and just think, “How exactly did I get here?” I had one of those moments this past Christmas season. It the Sunday before Christmas. We had just finished lunch with my foster daughter’s biological grandma, mom and her mom’s fiancé in our home. As I sat there doing my best to engage and make the situation as normal as possible (which by the way, I don’t know that it will ever feel normal to be in a room with people that the only thing you have in common with is the sweet five year old girl that calls you both ‘mom’), my eyes began to wander. They wandered underneath the coffee table where the scrapbooks that many loving hands made for me during my battle with leukemia. They wandered to the wall where two pictures hang of precious children that lived in our home for a time, but for some reason the Lord saw fit for them not to stay. They wandered and stay fixed for awhile on the sweet one month old baby that was in my arms who because of a terminal diagnosis couldn’t see my face due to cataracts in both eyes and was eating from a feeding tube. “Its been a wild ride these last few years, Lord…” my heart whispered in prayer.
This is not my story, but instead God’s story of how He is faithful and good to this much needed grace recipient.
I was blessed to grow up in a home with parents who loved the Lord and taught me by their example to do the same, leading me to a relationship with Christ at a young age. I went through different seasons in my relationship with Christ. There were times I followed very hard after him and times when I ran in the other direction. After high school, I attended Summit University, a wonderful Bible college in Northeastern PA and studied Counseling/Psychology. It was during this phase of life when I truly made my relationship with Christ my own. With the influence of many wonderful professors and roommates, I grew leaps and bounds during those four years. It was during this time I met my husband, Chris.
Chris and I married after my senior year and settled into a quaint (I say quaint because that makes it sound cute… if your first apartment was anything like mine you can commiserate) little apartment in PA while he finished his accounting degree. During the year and a half that followed, both of us working full time and my husband going to school full time, we clung to each other. We enjoyed evenings binge watching shows on Netflix on our sketchy internet connection and eating food from Sheetz. We would play tennis and take walks. We attended a sweet little Mennonite church where we were embraced and loved immediately. We were busy with work, school and church but it was a time for my husband and I to enjoy each other without a lot of hard things or stress. It was a gift. I felt my dreams were coming true when my husband finished his degree and started interviewing for jobs in Ohio. I am a homebody and really wanted to move back closer to my family. He accepted a job at an accounting firm in Akron and we moved back on my birthday December 30, 2010. I got a job working as a full time nanny and we settled into our apartment and began saving money for a house. We had plans of course… save money, buy a house, start a family.
God had other plans.
A few weeks after we moved, I caught a cold… that never went away. I was sick for weeks. Doctors would prescribe different antibiotics for what they told me was just a really bad sinus infection, but nothing seemed to help. I had a fever most of the time, multiple bloody noses everyday, night sweats, and my body continued to get weaker and weaker. Finally, after 2 months of this I landed in the ER on a Sunday afternoon demanding answers. The Doctor was in a hurry that day and didn’t even finish listening to all my symptoms before rushing out of the room to write me yet another antibiotic for a sinus infection. “Please God,” I begged, “You have to intervene here. I know something is wrong with me!” I assumed I had a really bad case of pneumonia or bronchitis and just needed some stronger medicine to take care of it. The Doctor returned and said after second thought that some of my symptoms were strange and that maybe we should do a blood draw. “Thank you, Lord! “ She left and returned an hour later in a gown, gloves and a mask. She handed me a mask and told me to put it on immediately. She said I would be leaving momentarily in an ambulance. She explained to me that my labs did not look good and I needed further testing. On March 8th, after a couple of days at the hospital, the diagnosis came… leukemia. My first thought when I heard those words was A Walk to Remember, and I thought “Oh boy, it didn’t turn out so well for Mandy Moore…”
The specific diagnosis was acute lymphocytic leukemia. Which meant it was aggressive, but it also had a higher cure rate for young people like myself. I was transferred to the main campus of Cleveland Clinic and immediately started an intense, inpatient round of induction chemotherapy that would take six weeks. My husband was working in public accounting during this time and so, of course, March and April were the busiest months of his year. Still, he came to the hospital as much as he could even though he was learning a new job during the busiest season. My parents also visited most days, and friends and other family were there to encourage and help us through. It was a long six weeks and we were all relieved when I finally got the clear to come home.
Once I was home, I continued to get treatments once or twice a week for the next nine months. This involved driving downtown and usually spending the entire day seeing my Doctor and then having my treatment. My chemo day was usually Thursday and I would really feel the side effects of the medicine all weekend. After the initial nine months, I went to doing chemo just once a month for the next almost 2 years. The Lord taught us so much through this season of life.
I learned (only because I was forced) to SLOW down. Up to the point of being sick I had always lived my life over-committed. I never wanted to miss out on anything, so I never said no. I learned to be content living a simpler life. I would have never chosen this, so I’m thankful that I was forced to learn it. Even now that I am healthy, I’m often tempted and sometimes fail in falling back into the over-committed lifestyle. But my most meaningful times in the Word and in prayer; and my deepest conversations with people happened during this season when I was forced to stay home and just be. I think we miss out on so many opportunities God has for us if we don’t leave some “white space” in our days and in our hearts and minds. It is a discipline that some days happens easier than others, but is something I want to continue to work on.
One of my biggest ministries during this time was the Doctors and nurses who I regularly met and spent time with. They saw me at my worst and it was not always pretty, but I hope they also saw the strength and peace that could only come from the Lord. The verse that I claimed during this time is Isaiah 26:3, “You will keep him in perfect peace whose mind is stayed on you, because he trusts in you.” There were many times my mind would get carried away with all the ‘what ifs’, and I had to come back to the truth of this verse. I had to choose to fix my eyes of Jesus and believe He truly was working in and through me during my time of sickness. And God did not disappoint, filling my husband and I with his peace.
My treatment from beginning to end was over two and a half years. The apartment we had chosen to be our “interim housing” until we could buy our house became our home for three years! Obviously, the plans we had made were not going to play out the way we had imagined and we asked the Lord what we were to do next. We both had a burden for adoption and through much prayer and counsel from others decided to become foster to adopt parents through our county. It took nine months to complete the foster care licensing process. While we worked through the process, we moved to a little 2 bedroom house. We were ready for our first call! Again, we had plans; in my mind I hoped for a baby girl.
We got called for a five year old boy. We said yes. It was only one week at first, just a respite so that his foster parents could have a break. But we fell in love with him. Never in my life had I been face to face with so much hurt in a child’s life. A child so in need of someone to consistently love and care for him. He made us laugh but he also made us cry. It seemed so wrong that such a little boy already had experienced so much tragedy in his five short years. He went home after that week and I sobbed. It turns out he had gotten quite attached to us too. His foster mom called the following week and said he has been begging to come back to our home every day. She asked if we would take him for another week and we willingly agreed. She told us there was a chance he would go up for adoption and she was not able to take him. Our hearts grew excited as we thought about being able to bring this troubled little boy into our home permanently and love him through his trauma. After the second week, it was even harder to say goodbye to him. My heart ached for him day and night. Was this little boy supposed to be part of our family? We prayed that the Lord would sovereignly work this situation out. He did work it out, but the plan was not for him to be with us, and overtime we saw why. A week later we got a call for a little 4 year old girl. We said yes.
We drove to pick her up on a Friday night. While I talked to the social worker on the phone so we figure out where to meet, I could hear the girl sobbing in the background. As we drove, I prayed “Lord, I know nothing about this girl. Please show me how to comfort her and make her feel at peace with us.” When we arrived, she was still screaming but as soon as the social worker placed her in my arms, her crying ceased and she relaxed into my body. It certainly did not take her long to get acclimated to our family. We’ve had many ups and downs with her during the two years she has lived with us. Being a mom is hard. I had never considered myself an “easily angered” person and then I became a mom. It quickly became a major sin issue for me that I daily had to ask for strength and grace from the Lord to overcome. During this time we also got called for…. wait for it… a baby girl!
I fell in love with her right away and she did not have either parent in her life so I embraced the role of being her mom. But 8 months later the call that I had dreaded from day one came, our baby was getting placed with a biological family member. I prayed and begged the Lord to please let us keep her, but she went. I remember loading my van up with all her belongings and driving her to live with a woman she and I had only met once. My heart had never ached so much as when I handed her over and walked out the door. Why couldn’t God’s plan have been for us to keep her? At the time I just couldn’t see past it. I cried myself to sleep for weeks… but then the answer came. When our sweet baby girl left, I was 13 weeks pregnant. At my 19 week anatomy scan, they found some pretty major abnormalities with our son. My OB took my husband and I into her office and explained if what she saw was correct, that our son was going to be born with a rare and terminal disorder called RCDP. We decided to get genetic testing done to be sure of the diagnosis and to give us a chance to prepare for his arrival. The results took over two months to come in. We waited and prayed and waited and prayed… During these months, our foster daughter’s mom asked us if we would like to adopt her! We were thrilled and excitedly started the process of moving toward permanency for her in our home.
As we waited for the phone call with the results from the tests our hearts and minds were all over the place. The syndrome is so rare, there are currently less than 60 children in the whole world who are living with it. We felt that the odds were in our favor because of this. But one night when we were on vacation in OBX we got the call. Our son Charlie did indeed have RCDP type 1. The statistics were grim. Many of the children born with RCDP die before age 1 and if they make it to 5, they are considered a long term survivor. I grieved the pictures and dreams I had of having a healthy baby. I tried to imagine what it would be like to watch my baby die and the thought was too much to bear. My husband and I joined a support group and did as much research as possible to prepare for our sweet baby that was coming in two months. I would cry out through tears, “Lord, haven’t we been through enough?” I didn’t understand why this would happen to us. I remember one of the grandmas in our support group telling me before Charlie was born, “Just wait until he’s here. There is not a more perfect and pure picture of joy. This baby will cause you to experience love in a whole new way.” I wanted to believe her, I really did… but I just couldn’t. I didn’t want to be a special needs mom. I just wanted a healthy baby. I prayed daily for the Lord to change my heart and prepare for me what lied ahead. He answered that prayer seven fold. Charlie arrived in November and I can honestly say my heart has never felt so much love.
Being Charlie’s mom has stretched me in so many ways, and made me rely on the Lord more than ever before. Physically it is exhausting… but the mental and emotional aspect of loving Charlie is the hardest part. An older and wiser woman of God called me a few months after Charlie was born to see how I was doing. She had lost two daughters to cystic fibrosis. She empathized as I told her about how exhausting Charlie’s care was and she listened quietly as I told her, “I just can’t imagine losing him. If that happens, I don’t know if I’ll be able to keep going.” She told me something in that moment that changed my thinking so much. She said, “Chelsey, the Lord only gives the grace that you need for today. Today, you need grace to care for Charlie, and your daughter and husband. If the Lord decides to take Charlie, on that day He will give you the grace you need to handle it.” I’m learning to trust God to give and then rely on the grace for that given day.
It’s so easy for me to treat every day with Charlie as a gift because of his diagnosis. But something the Lord has laid on my heart is that none of us know how long we have on this earth. I always worry about something happening to Charlie, but any one of us could be taken at any moment. I want to love my daughter and husband well and my neighbors and friends. Make sure the time I spend with them is valuable and making every moment count.
Over the last six years I have truly learned that “His ways are not my ways and His thoughts are not my thoughts…” Instead of being frustrated and disappointed by this, I can now find a great deal of comfort in the fact that He is control. I have gotten some answers to my why questions, but definitely not all of them and maybe I never will. God’s hand is always evident though. He does not waste any of our experiences. I have seen how He has used the different things we’ve gone through to prepare us for the next thing that comes our way.
“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.” James 1:2-4
It was tempting to think sometimes that when hard things came into our life, we must be doing something wrong; as if it was some kind of punishment. I have such a different perspective on trials now. In my life, when I’m walking through the valley, the Lord often seems nearer than ever and that is a beautiful place to be.
Chelsey would love to connect with you!