I knew the moment I saw this precious little boy he was going to be my child.
There are very few times in our lives where we meet our destiny. This happened for me in 2007. Today was like any other day, woke up, went to work, nothing special…until I saw this little boy being rolled in to the MUSC Storm Eye Institute eye clinic in a little red wagon. I will never forget how scared he looked.
Christian had been living in a motel in Myrtle Beach, SC with his birth mother up until the age of six. For the last six months or so he had been complaining of severe headaches followed by vomiting. This went on for a long time with his birth mother believing that he just didn’t want to go to school. He was never taken to a doctor to be evaluated and because of this his condition continued to get worse.
Christian had fallen down the stairs at the motel where he lived and his birth mother worked….it was at this point that one of the maids called DSS on her. An ambulance was dispatched to his school that transported him to the hospital for evaluation. It was then determined that Christian had a very large brain tumor and Hydrocephalus. Christian was then transported to the Medical University of South Carolina. At this point it was determined that he had Medulloblastoma and had lost most of his eyesight from the tumor growing so big and lack of medical treatment.
Christian was brought into the eye clinic where I worked as a Certified Ophthalmic Assistant prior to his going to surgery to have the tumor removed. This is how we met….I knew the moment I saw this precious little boy he was going to be my child, I couldn’t explain how I knew, I just did! I knew nothing about him or his background other than the fact that he needed an eye exam prior to going to surgery. He was so small and scared…he didn’t speak a word. After the eye exam and hearing a little about his medical condition, I knew this child was going to have a long road ahead of him. I was not aware of the family situation at this time but this would come to light quickly as the days passed.
After having brain surgery to remove the tumor and having a VP shunt placed in his head to help drain the excess fluid and relieve the pressure on his brain he was admitted to the hospital and would face many months alone with no family to visit or check on him. Basically, the nurses in the Children’s hospital took care of him for months until DSS could find a foster family for him. Christian would face almost a year of chemotherapy along with radiation treatment alone. The birth mother had relinquished her rights and none of his birth family would ever come to visit him.
Thankfully, God intervened in this young boy’s life and brought the most amazing Christian couple to act as his foster parents until he could be placed for adoption. Over the next several months I would see Christian in the eye clinic for his frequent follow up visits and when he would be admitted to the hospital each month for chemotherapy his foster mother would come and get me to come up and see him. I think she already knew what God had planned for my future and Christian’s. Each month she would work on trying to get him to adopt him…at this point in my life I was 40 and had never been able to have children of my own. I came up with every excuse in the book, “I’m too old”, “It would be to hard and so much work”, any excuse you can imagine..all the while knowing in my heart that this little boy was meant to be mine and who better to raise a blind child than someone who already worked with the visually impaired?
It was around Christmas time 2007..I had gone to Christian’s hospital room to visit and as soon as I walked in I felt the Lord speak to me loud and clear. “This is the child I want you to have, go do something about it”. I went home that night and told my husband about this little boy and the message I had received from God. I told him that I wanted to adopt this little boy and I made a promise to God that day that I would take care of him for as long as God needed me to. We went the next day and filed the paperwork to adopt Christian. Eric had agreed to this and we both knew it was going to be hard be we had no idea what the future would hold. We spent the next several months preparing for the adoption, going to classes, getting the house ready for inspection and planning on this special little boy to come live with us.
We spent some time with him before he came to live with us and then on August 6, 2008 we got him (our GOTCHA DAY)! I will never forget him asking if he could call us Mom and Dad? On the second day that he had come to live with he called us that from that day forward. It was always like it was meant to be, there was never any awkwardness between us, and no doubt in my mind that we were meant to be a family.
The next several years would prove to be challenging. Christian suffered with developmental delay, hearing loss, cortical blindness, short term memory loss, Hypopituitarism, Hypothyroid, POTS syndrome, severe acid reflux, not able to absorb nutrients and having a feeding tube put in place and many others which would turn out to be long term effects from the chemotherapy and radiation treatment he received. This would cause many hospitalizations and a lot of stress. As hard as it was, God always got us through.
There were many occasions where Christian would tell me about God visiting him in his dreams. On one such occasion I woke up one morning and had gone into his room to check on him and found a drawing on his drawing board. There was a Cross and many little X’s around this cross with one in the middle. When I asked Christian what this was he stated that, “Jesus had visited him in his dreams and was at the end of the bed speaking with him while there were angels flying around the head of the bed, he said that “Jesus told him everything was going to be okay and he was with the family he was supposed to be with”. I couldn’t believe what I was hearing. I knew there was something special about this child but would not come to really understand what that was until several years later.
Christian had several visits from the Lord over the next few years and really grew in his relationship with Christ. It was so beautiful to watch this child who had gone through hell in his short life be so appreciative of what the Lord had done in his life. He had a very special relationship with God and that relationship would only grow in the years to come.
While he had suffered with many medical problems and hospitalizations over the years it was not until the summer of 2016 that I noticed something wasn’t quite right. He had been experiencing episodes where he would be talking about one thing and then all the sudden be talking about something completely different and not even realize he had done it. He also had episodes of severe shaking and muscle contractions that would last up to 12 hours at a time and were very painful. It was horrible to watch your child go through this and not be able to do something about it. I had taken him to the ER and Doctor on multiple occasions telling them something was wrong and they would admit him but never found anything wrong. In September 2016 the episodes were getting worse and I took him back to the pediatrician’s office and while we were there the shaking and contractions actually started happening. The doctor had never seen anything like this so he sent us to the ER and Christian was admitted for evaluation. After 1 week of being in the hospital and waiting on an MRI, they still could not find the time to get the scan done and sent us home. He continued to get worse over the weekend and would not get out of bed. On Monday, I called the cardiologist thinking it might be his POTS syndrome and they agreed to see him. While there, the Brain Tumor Clinic coordinator happened to see he was there and stopped by to see him. He was having the contractions in his legs and uncontrollable shaking. The coordinator stated that this was a neurological problem and needed to be evaluated immediately. “Thank God, I thought”, finally someone sees what I have been seeing for months. I had hope for the first time in a long time. We were sent directly to the Neurologist. When the neurologist came in to see Christian and saw what was happening he stated “in all his years of practice he had of this but never witnessed it until now”. Myoclonus is what it’s called. He then immediately admitted Christian to the hospital even though we had just been discharged 2 days prior and said he was not leaving until he got an MRI and Lumbar Puncture done.
While I finally had hope that we were going to get some answers, it suddenly dawned on me that they might not be the answers we had hoped for. I know this sounds crazy but it really never occurred to me until that moment that he might have cancer again. My heart sank….
As the days went by they did more and more tests…we finally had the results.
The Neuro-Oncologist stated that he had what they thought was recurring Medulloblastoma in the brain and also in the spine this time, and that is what was causing the contractions and shaking. It did not present itself the same as before but now looked like patches of crystals in the meninges of the brain. The neuro-surgeon explained to us that he could not biopsy the spine because of the location, it would paralyze him and the area in the brain was too deep in the cerebellum. The Neuro-Oncologist said that all we could do was watch it over the next few months to see if there was any progression. It was then that the roller coaster began..
Eric and I had been separated for over a year at this point and going through a divorce and I didn’t think I would be able to handle all of this but then I realized I didn’t have to. God was going to handle it! Over the next several months I would come to realize that I had to let go of my control over something that I had no control over. It is the hardest thing in the world to watch your child suffer endlessly and not be able to fix it, but I couldn’t. Christian would continue to have MRI’s every 2 months and by January 2017 he had started having seizures. The seizures effected every part of our lives. He could barely go to school, let alone out to dinner or to visit. The change in our daily lives was the hardest to deal with. He handled it amazingly most of the time but did have moments where he would talk about dying or about not being able to have a normal life and hang out with friends..there are so many other aspects to dealing with these issues that we never think of until it happens to us. I would constantly question why this incredible little boy had suffered his entire life..it just doesn’t seem fair. At the same time I would I started to really pay attention to what he said and did. As I watched him I realized that he had a faith in God unlike anything I had ever seen and was so full of love that he couldn’t help but share it with the world! Christian affected everyone he came in contact with whether he knew them or not.
Incredible miracles started happening in our lives once we decided to focus all our energy on God. I had been told by the Neuro-Oncologist that he may have 1-2 years to live. Medulloblastoma is a very aggressive form of brain cancer and at this point chemo and radiation are not an option for him.
With this information I decided that we needed to focus on making special memories and not on the disease itself. This became my mission! Christian was given the chance to meet his favorite Christian singer, Jeremy Camp. This was arranged through the Palliative care team at MUSC. Christian got to attend the concert with front row VIP seats and got to meet and hang out with Jeremy before the concert began. During the concert Jeremy came down to where Christian was sitting in the audience and prayed over him. It was an incredible experience to watch. Even though his father and I were going through a divorce, Christian wanted a family vacation in the mountains for Christmas so we made it happen and I am so glad we did. Over the next few months Christian was blessed to able to participate in special events thanks to some incredible family and friends in our lives.
He wanted to go to The Okra Grill for his birthday in February so we did. While there, I noticed this man kept staring at us and I couldn’t figure out why, my mom noticed it to. When Christian got up to go to the restroom this man came over to our table and proceeded to tell me the following: “I don’t know you, but I am a preacher and I’m visiting here from Ohio. God has placed a very special message on my heart to give to you and I wasn’t sure if I would do it but he kept urging me to. He said to tell you that your son is going to be okay. The next several years would be good for him. I don’t know what’s wrong with him but felt led to share this message with you.” I then proceeded to cry and told him that there was no way he could have known that my son has brain cancer. I then proceeded to thank him and God for the incredible message.
Christian’s favorite hockey team then gave him the opportunity to be SC Stingray for the day. It was a dream come true. He got to watch them practice, hang out with them, got his own team jersey with his name on it, interviewed by the TV stations and memories to last a lifetime.
Next came the chance to experience being in the Coast Guard for the day and visiting an amazing lighthouse and boat ride thanks to some very good friends who made it possible.
In May 2017, he was asked to the senior Prom for Stratford High School by a very sweet young lady…this was a special exception since he was only a freshman in high school. We have incredible memories and pictures from this night.
Father’s Day 2017 did not turn out as planned so I decided at the last minute to drive to Charlotte to take Christian to the Cheesecake Factory…Sounds strange but he loves cheesecake and was pretty down this day. When we got there, we were seated by a large family. I noticed throughout dinner that they kept looking over in our direction..I wondered what they kept staring at us for. They had already paid their bill and we were still waiting on ours. The waitress then came up to me and told me that our bill had been taken care of by this family. I couldn’t believe it, we didn’t even know these people and they felt urged by God to do this for Christian. What an amazing evening it turned out to be as we sat and talked with all of them for a while and then became friends on Facebook, where they continue to follow Christian’s progress and check up on him periodically. Just another amazing way God continues to work in the life of this very special child. He seems to attract this where ever he goes.
Summer 2017, did not turn out as planned either…Christian was signed up to go to 2 different summer camps and ended up being sent home due to his seizures and illness. He was so disappointed but continued to stay strong.
July 2017, Christian was due for another MRI. I was praying that everything would be ok. We received the news that there was only one extra small spot that had shown up on the MRI…this was incredible. The cancer was not making much progress so all of the many prayers were working. It was at this point that we were told that he had a blood clot that had dissolved on the left side of his head and the space was now filling up with fluid and putting pressure on the brain. If he didn’t have surgery it would start affecting his speech, memory, cognitive and coordination, not to mention making the seizures worse. If we were lucky, having this surgery may even stop the seizures so we were definitely on board when we heard this. In August 2017, Christian was admitted to the hospital to have a drainage placed in the left side of his brain to drain this fluid. He did well with the surgery and we had hoped that his seizures would no longer dictate his life. Unfortunately, one week after starting school again, the seizures have returned. While disappointing, we will continue to keep hope and faith as our focus. Some days this is all we have…..
Christian’s last wish was to visit Israel and to be able to walk where Jesus walked. While he was to ill to travel to Israel, my best friend found the next best thing. She planned a trip to the Biblical History Center in LeGrange, Georgia for Easter 2017..there we would meet some incredible people that God had once again placed in our lives. Everyone there seemed drawn to Christian, so as they began to hear his story, little did we know they were working behind the scenes to make a dream come true. We met Dr Fleming, who was the archeologist that created and built this incredible facility. He was leaving the next day for one of his many expeditions to Israel, he had Christian write down a prayer and he was going to personally place it in the Western Wall during his visit. As if it couldn’t get more incredible, we left and were called back because they had someone that wanted to speak to us. When I got there, it turned out that Dr Fleming and his incredible staff were friends with the founder of the Make a Wish Foundation and he was going to be traveling to Israel with him the next day. The staff called him to share Christian’s story and he personally got me on the phone to tell me that he would personally see to it that Christian would be able to take a trip where ever he wanted to go. This was God, working his out his plan for Christian. At this point we have not been able to make this happen but are still trying. I have hopes that this very spiritual child will get to experience this once in a lifetime trip.
I am so honored that God chose me to be his mom….I have never met a more loving, kind, and deserving young man. After all he has been through in his short life, you never see him without a smile on his face. He rarely complains and is truly here to spread the love and light of Christ in this world. It is never more evident than when I see him with others and how he affects them. He always puts others first and is focused on God’s mission for his life. He truly is a bright light in this dark world. While we don’t know what tomorrow will bring, we take each day one day at a time. My mission now is to create lasting memories with my son and hopefully to share his incredible love and light with the rest of the world.
Instead of focusing on the what the future may hold, we try to stay focused on all the incredible things God has done in his life. We both have been blessed to have so many incredible people come into our lives and to experience the good that is still in this world. Christian chooses to focus on the good and to make sure that people remember that it still exists. What a much better world we would all live in if this message were spread around the world instead of all the hate and anger that we see on the news everyday. The hope is that one person will see this story and learn from it. God does not promise us an easy life but he does promise to be with us each step of the way. Even though this is not a disease I would wish on anyone, I know that God will take Christian’s story and make something amazing out of it!
Thank you to everyone who has played a part in my son’s life….