4.5 Years we waited.
My arms ached for a child. We had our first little one, who was absolute perfection, and I was desperate for another. We had endured the grief of losing two precious babies along the way, and I walked around heartbroken.
Then one day, hopeful, there were two lines instead of one on the test! Now, so many of us who have miscarried do not get excited until we are told it’s “safe” to do so. The thought of going through this again excited me, but at the same time I was oh so cautious, so careful to remind myself that this one may not stay, like the last two.
After several trips to the doctor, and some early pregnancy complications, we saw that beautiful heartbeat. I hope I remember seeing the heart beats of my children until I take my last breath. There is nothing more awe-striking than watching the life inside you grow right before your eyes. Each pump of that tiny heart, every movement, spurs that child one step closer to your arms. I felt at peace, my hormone levels seemed good, the medicine seemed to be working….and there was that amazing heartbeat.
Things were basically smooth sailing after our initial “scare”. I had to give up a few things because of the complications combined with my history, like the 3 day walk that we were scheduled to do, but, wonderfully, Levi thrived. The last several weeks proved slightly complicated and I spent 6 weeks laying on my left side, two of those weeks I vacationed at the “Baylor Bed and Breakfast” (aka the hospital). Shout out to all my sisters who failed at home bed rest!
Levi came late one night via c-section, and was precious. Red hair. Blue eyes. He was perfect, just like his brother. And healthy! We had two amazing children!
As Levi got older, we started to see strange things. He was gaining weight and doing well, but there was something that just wasn’t “spot on”.
When we started to try solid foods we saw our son deteriorate further. We made a switch to soy milk, to almond milk, to virtually every kind of “milk” you could find at the store and nothing was helping.
It was a completely helpless feeling, trying everything you can for your child, but your efforts continually deem themselves fruitless. Caleb and I watched our son deteriorate before our eyes. We were changing 12-15 dirty diapers a day. Levi’s hair was falling out by the hand full. He would literally reach up and brush his hand against his hair and bring his hand down full of hair. He had no color. His eyes were tired all the time. He could not sleep because of the pain and would scream for hours on end. He had blood in his stool. He was vomiting constantly. He had no energy. We were scared. It felt like we were watching our son die before our eyes. I work from home, so either I sat and held my son all day or my beautiful friend did, because that was where he was most comfortable.
We had been to the doctor several times, trying different things, but this time we needed to run those terrible tests and got a referral to a pediatric Gastroenterologist.
We waited for those tests to tell us that our son did not have cancer (Praise God!), or any of the other wretched diseases that could potentially be causing these issues.
We got in to see the GI and she scheduled a scope for the next day, which was amazing. She instructed us to feed Levi only chicken, rice, and vegetables until further notice. The scope revealed his little GI tract was so very irritated, and she got some biopsies to send off to hopefully give us more answers.
Those answers eventually came in the form of a million dollar word: Eosinophilic Esophagitis. One in 10,000 people were diagnosed with it when Levi was first diagnosed. We suddenly found ourselves in the realm of rare disease. Eosinophilic Esophagitis (EoE) is a disease that acts similar to an auto-immune disease but is not actually classified as such. It is allergy related and children who have EoE often have food allergies along with it, but it is not a food allergy. When Levi would ingest “trigger foods” (food that his body did not like) his body would react to them in the same way they would a parasite. The eosinophil is a white blood cell that combats things like parasites. They were prominent in his esophagus, where there should actually be none. When these eosinophils set up shop in an esophagus it renders the esophagus useless, and causes permanent damage. We also knew he was having issues somewhere else in his GI tract but he was so young we couldn’t pin down the exact cause just yet. There’s no cure for Eosinophilic Esophagitis (EoE), and less than 10% of children outgrow it. There is no medication approved to treat EoE, but research has found that food avoidance and off-label use of medications like Budesonide (used by asthma patients in nebulizers) when they are swallowed do help.
We switched from the GI we had to the best GI to go to in DFW for this disease. In our opinion we would try him out before we headed to Cincinnati, which is basically the headquarters for research for Eosinophilic Gastrointestinal Disorders (EGIDs). It turned out that we loved this GI, he had Levi’s absolute best interest at heart, and he loved Levi. He had our back, he was very knowledgeable about EGIDs, and was one of the few doctors who adhered to the TIGERS consensus (the prominent written document on how to treat EGIDs in regards to medication, food trials, etc.), so we kept Levi’s treatment with him.
Levi now found himself on 4 new medications, one to help heal is intestines, one to stimulate his appetite (when food causes pain the last thing you want to do is eat), one to bring him out of an EoE flare and to hopefully stabilize the disease, and one to promote gut flora. He was to drink a special hypoallergenic formula which is where he would receive most of his nutrition. In the meantime Levi could not eat wheat, soy, dairy, eggs, fish, shellfish, peanuts, and tree nuts, as these were all common triggers for EoE flares. All restaurants except one were out of the question. We had to get new cook ware only for Levi’s food. We found special food for him (that often tasted terrible). You name it in our lives it changed. He was having regular scopes to watch his esophagus and colon to see how the disease was affecting him.
In the next turn of events we also learned that he was infected with c-diff, salmonella, and shigella, so we started the road to clearing all of that up.
Eventually we started to see a change in our son’s health. The blood was gone, he was not at all to the energy level of a little boy his age, but he was better, he was sleeping a little better, his hair was staying on his head, and the diaper changes were still significant, but nothing like they were. People commented on how fussy he was, as he was still in pain. He came in and out of flares because something in the environment was a trigger for his disease and we could do nothing about it. But it was our Levi, we loved him with all of our hearts. Our families worked diligently to learn how to cook for Levi. I would often get text messages containing pictures of food labels with the caption “Can Levi have this?” My husband searched for restaurants and recipes that were “Levi safe”. We saw a nutritionist on a regular basis to help us balance his diet and an allergist for other issues.We learned words like cross-contamination, counts, flare, and a whole host of other words. We went nowhere without the $45 can of formula he was supposed to drink. People looked at us funny when they saw a child his age drinking from a bottle, but, that was the only way he would drink it. They looked at us when Levi was so fussy because he was hungry or in pain. We had good insurance but the medical bills still piled up. My husband fought the insurance company to keep us from spending $600-$1200 a month on formula, and his company showed us much grace. God got us through. He blessed my business enough with income and workers so I could take care of Levi. We had a dear friend and family members who were not “afraid” to take Levi to give us a break. We were so moved by the compassion those beautiful people had for our son. I still am. I remember crying in the grocery aisle, tears of joy when I saw a company carrying a new “Levi safe” product, and sadness when the bother of reading every single label was overwhelming me. We were tired, but we had our son and he was no longer wasting away before our eyes!
It was disheartening to know that this was our son’s future. I cried out to God, asking him how my son was going to function in ordinary life. He told me that he would take care of him. Looking back on it now I wonder if he smiled when I was asking these questions, knowing the whole time what was going to happen, in his omniscient presence.
We went like this for about 2 years. Levi was trudging along. He was sick a lot, because EGIDs suppress immunity. We joked with the pediatrician and nurses about naming a wing of the building after us, or dedicating a room for perpetual visits, because we were there all the time. There were so many blood draws and tests, but he was a trooper through it all.
One day I received a phone call from a dear friend/mentor. He was telling me about stories he had heard of children being healed miraculously and even told me about his great-grandson being so sick but suddenly getting well. He told me he knew who was behind his great-grandson’s healing, God, completely. He asked me at that point why we hadn’t been praying for God to heal Levi. Caleb had I had talked about taking Levi to the elders of our church (like it says in James 5:14) and having them pray over him, but honestly, our faith was small. We knew that God could heal Levi, but what if he didn’t? We both wondered what we would do if God “told us no”. Would our faith be able to handle it? Would we still see God as good if nothing happened? Ridley, being the incredible man he is, let me know he was going to be praying for Levi’s healing, and I very much was thankful.
The Lord used this conversation with our friend as a catalyst to get my mind thinking. I had several conversations with our Lord over it. It seemed like God was telling me “I have already healed him, all you need to do was ask.”
One night we were going to a special service at a church that some friends had invited us and a few other friends to. When we got there I explained to the young lady in the nursery about Levi’s condition. I normally just tell people he has food allergies because people are more familiar with it and it makes it easier, but this night I was frustrated with people not understanding Levi’s disease, or just brushing it off as food allergies. She was overwhelmed and frightened because of his condition. Before I knew it the manager of the children’s area was involved in the conversation. I thought for sure they were not going to let him stay. It was far from that, though, and they just wanted to make sure they were taking care of him in the best possible way. That night, for the first time ever, I walked away with the realization that my son was a special needs child. He may not look like your average child with special needs, but he most certainly was. I knew I was going to have to fill out “the paperwork” when he started school, but it never dawned on me that he had special needs. To us he was just Levi.
Interestingly enough, as soon as we got into the service they started talking about healing, about how God has worked so many miracles and how he still does today. They were naming story after story of God’s provision through healing. They mentioned a few children with food allergies who were healed. Obviously the Holy Spirit was working on us. We got the point. An elder of that church came on the stage and said that he wanted to pray for people whose condition was terminal. He said the medical definition of terminal was actually an illness a person would take to their grave. Caleb and I both knew what we needed to do. He asked me if it was ok, and we cried together as brothers and sisters in Christ laid hands on us and prayed for our son.
At the service’s end we went to get Levi from the nursery. Once we were in the parking lot Caleb assembled the friends we were with after asking me about what he was about to do. Caleb was asked if we wanted to go back in and have someone pray for Levi, but he said no, that God hears the prayers of every man. So there we stood, at the request of my husband, surrounding Levi and praying for his healing. I couldn’t muster an audible prayer so I prayed silently. I knew the requests of our precious friends and us were heard that night. God had told me “you have no because you ask not”. We asked. God delivered bountifully.
After we were finished praying the kids were hungry, so we stopped and got them BOTH chicken nuggets, something we had never done before, because wheat is a huge trigger for Levi. The next morning I was cautious, almost expecting him to be sick, but he woke and was perfect. I gave him an egg sandwich, and he said “I LOVE BREAD!” I took pictures of him eating things he had never eaten before!
Two weeks later we found ourselves with a brand new Levi. The pain that once riddled his little body was gone. He had a color that he had never had before. His eyes were bright, and there were no dark circles around them. He slept!! He was all but climbing the walls with his new-found energy! He had normal GI function. Two weeks before we asked God to heal Levi he was in the middle of a flare. We knew the disease was alive and active in his body. We knew that the foods I was now feeding him were major triggers. We have no human explanation for his healing, except for the intervention of Jehovah Rapha.
Almost nine months later he is still a different kid than before that prayer. We know, we know, WE KNOW God healed him. He has no symptoms of the disease, no evidence at all of the disease in his body. He eats and drinks whatever he wants. I have had nursery workers from our church approach us and say “what is going on with Levi, he is a different kid than he once was?”
I often think, “Wow, God, I never deserved such a wonderful gift”, and I am right I don’t. That’s where the grace of God comes in! In Matthew 7 Jesus talks about how good of a Father we serve who is so willing to give us good gifts, all we have to do is ask him!
We have hesitated making our news known to the world. It’s not about the scoffers; we know there will be those who do not believe, or try to explain away Levi’s miracle, and that’s ok, we do not expect everyone to understand. It’s because we know several whose children still walk around with this wretched disease, and other diseases. We understand, even if just a tiny piece, of the hell that you walk around in when your child’s body is consistently failing them. People ask the question, “Why has my child not received healing?” I don’t know that answer. I know that every child is beautiful and has a precious purpose, and please know we want to support you and love you any way we possibly can.
Please PLEASE share Levi’s story! Give God the glory he is due through it! For from Him, and through Him, and to Him are all things! To HIM be the glory forever and ever!