Today is February 28th, it’s Rare Disease Day. This day brings back a lot of memories and hardships and things to come. But it’s a day to find joy as well. I wanted to share a little bit about my testimony over the last couple of years. If you have few minutes, feel free to read! Or I recorded a podcast with my dear friend Abbie and you can listen to it there! https://open.spotify.com/episode/5T5MGFCe9MH4eMrMHfAlSc?si=rU4i-UzXQS6j3OV0UJbAbw
My youngest son Logan, was born with a rare condition called Fibrous Dysplasia. Fibrous dysplasia is a skeletal disorder that is characterized by the replacement of normal bone with fibrous bone tissue. Fibrous dysplasia - About the Disease - Genetic and Rare Diseases Information Center (nih.gov)
We noticed a bump growing on top of his head when he was about 14 months old. We decided to take him to his pediatrician to see what it was. The first appointment, they didn’t seem too concerned and told us to not worry. A few months go by and Logan had another sinus infection and we took him to see the on-call nurse practitioner. It was this NP that seemed a little more concerned and questioned what the bump on his head was. She asked if we could do an x-ray at that moment. When the x-ray came back, she wasn’t sure what it was exactly. She could tell that it was bone material and that it was liquid, which was a good thing. It wasn’t a cancerous tumor, but still something that she wasn’t sure of. She referred us to the University of Iowa Children’s Hospital. At this moment, I knew it was something a little more serious than we were originally thinking.
A few weeks later, we get to the University of Iowa and they had him do a CT scan of his head to see if they could further tell what this was. After waiting a few hours, the doctor came into the room and said that what they believe he has is Fibrous Dysplasia. They said that it’s so rare that they don’t even have a pamphlet to give us to read up on. They wrote down the diagnosis on a post it note and gave us a word of caution when researching this, because pictures online can be a little disturbing. They said that the only way to remove it, is to operate on his skull and cut it out and replace it with a metal plate. We decided to wait on any major decisions as it didn’t seem to be life threatening. We did have another CT scan done 6 months later at Iowa City and they wanted to schedule surgery. At this time, we decided to get a second opinion.
Our second opinion was at the American Children’s Hospital in Madison. We were able to get into their Pediatric Craniosyntosis Clinic and it consisted of a Pediatric Neurosurgeon and a Pediatric Plastic Surgeon, along with a team of students and nurses. Our first appointment was held just a week or so after I called them to get in. They rearranged their schedules to fit us in. When we got there, the team truly wanted to get to know Logan and who he was. They wanted to measure his bump, take pictures, and monitor it. They were insistent on waiting to do any surgery until it became medically necessary. We were so relieved to hear this! Because at less than 2 years old, the last thing we wanted to do was to go through multiple surgeries. We started with a follow up plan every year to scan and monitor growth. They were so wonderful to work with.
A few years later was when it came time to decide on surgery. This is where the faith part of my testimony comes in.
October 2018 was a month I probably won’t ever forget. I just came off of photographing nearly 25 weddings, we had issues with our mortgage company as we were trying to purchase land adjoining our property, a potential lawsuit from a client, I had blurred vision in my left eye, and was diagnosed with anxiety. At the end of that month, we had Logan’s follow up appointment and CT scan. It was during this appointment that they decided that he now needed to have surgery. The bump from the top of his head had grown over his forehead and into his left eye socket. It was restraining his sight and he had to compensate to see around the bump. It didn’t bother him, but could have gotten worse. The doctor said that his brain blocks it when he tries to see, just like we don’t see our nose when we see, unless we intentionally look at it. It’s the same scenario.
By this point, I had broken down. With everything going on in our lives, I no longer had control and I felt as if I hit rock bottom. I didn’t know what to do or where to turn. I knew that with Logan needing surgery, I needed more support from a faith perspective. I was working in my studio and I decided I needed to listen to Christian music and the song “Joy” by For King and Country came on and it resonated so much with me. With everything going on, I could choose Joy.
My husband and I tried a couple different church options to find a church community for support. We were invited to an inter-denominational church by some friends that was held in a community center. Our first service was the Sunday before Easter. I wanted to go to a service that was a normal service and not a holiday service. It was just the message we needed to hear.
The message was about the Bronze Snake from Numbers 21:4-9
4 They traveled from Mount Hor along the route to the Red Sea, to go around Edom. But the people grew impatient on the way; 5 they spoke against God and against Moses, and said, “Why have you brought us up out of Egypt to die in the wilderness? There is no bread! There is no water! And we detest this miserable food!” 6 Then the LORD sent venomous snakes among them; they bit the people and many Israelites died. 7 The people came to Moses and said, “We sinned when we spoke against the LORD and against you. Pray that the LORD will take the snakes away from us.” So Moses prayed for the people. 8 The LORD said to Moses, “Make a snake and put it up on a pole; anyone who is bitten can look at it and live.” 9 So Moses made a bronze snake and put it up on a pole. Then when anyone was bitten by a snake and looked at the bronze snake, they lived.
They referenced that we have sinned and we have sorrow and when we look at the cross that Jesus died on that we will be saved. They had two large crosses standing in church that day and they asked people to come up to the cross and write their burdens on a piece of paper and nail it to the cross.
It was such a pivotal message and seeing the congregation go up and act on this. Since this was our first service, we sat back and watched. However, at the end of the service, Nathan said that we should write down Fibrous Dysplasia on a piece of paper and nail it to the cross. This was the first time that I’ve ever done something like this and physically nailing it to the cross felt like a true surrender of the burden we were carrying. We felt relieved to be able to hand it over to Jesus to carry this burden for us now.
Logan’s Surgery was June 11, 2019
Fast forward a couple of years and I felt the calling to get baptized. I really struggled with this because it seemed like something I wasn’t ready for and that I was baptized as an infant. However, this was a different baptism. This was a believer’s baptism and was one where I get to publicly display my love and life surrendered to Jesus. I didn’t realize that God was calling me to get baptized during the cold month of February and that it would be on stage at church, I definitely wanted to do a more lowkey event. As a baby, I was baptized by my parents on my mother’s birthday, it was a special time to have my parents and godparents baptize me into their faith and traditions. The believer’s baptism fell on my mother-in-law’s birthday and I recognized God’s timing with this and how significant it was to be able to do this on another motherly birthday. The baptism went well and as I was sitting on the couch later that evening scrolling through social media, I realized that the day that I was baptized on, was February 28th and RARE DISEASE DAY! How incredible is God?! To use the very thing that brought me back to Him and to celebrate that on the very same day that it is recognized worldwide! God is so good!!
My testimony doesn’t end here, it continues to evolve by daily surrendering to the Lord and seeking the Kingdom first. From cutting off my right pointer finger in an accident and learning to trust Him during that time to finding out that Logan would need surgery again, but not as soon as we were once told. God continues to show up and I give Him all the glory!
More to come in another long post about continued God stories!
Logan continues to be an amazing kid and his love for God, others, and basketball is awesome!
