Hello there, welcome!
Before we get into some future topics, I want to give you an abridged version of our story.
Six years ago, we were a normal family. We have three amazing kids, two cats, and live in the same town in which I grew up. We had a normal life — school, homework, sports, were active in a local church, worried about finances, had friends, celebrated holidays, did things and made plans.
In 2011, our lives changed terribly and abruptly.
Our then 12 year old son, Carson, who had been healthy all his life fell suddenly and violently ill with severe digestive illness. In a matter of weeks he went from being a strong, happy, vibrant child to a pale, thin, weak boy suffering with unrelenting extreme pain. Over the last six years we have done every single kind of medical and natural treatment possible. Trust me when I say there is nothing I haven’t heard about. We have taken him all over the country and done everything we could do. I’m talking E V E R Y T H I N G.
We’ve lived in the hospital for 21 hospitalizations in total, some of them over two months long. He carries seventeen diagnosis’… Crohn’s Disease, Primary Sclerosing Cholangitis, Eosinophilic Gastritis, Eosinophilic Esophagitis, Delayed Growth, Chronic Anemia and severe Osteoporosis. Many months we’ve used feeding tubes to give him broken down elemental baby formula to survive. He is currently receiving his nutrition intravenously 24/7.
I cannot express in simple words the devastation that became his life, my life, the lives of all five of us. I have literally been watching my son continually starve to death. Nothing has ever helped. It has never relented. He barely ever leaves the house so I don’t either. I’ve been in some very desperate dark places in my soul, in my emotions and in my chronic exhaustion.
I have cried every single day for six years.
The constant trauma almost destroyed our marriage and my family. But it didn’t.
Here’s where the story starts to get a little better…
About three years ago I was in the lowest of low places. Through a set of circumstances, God’s light began to break though into my darkness. I became desperate for Him, desperate to understand our situation in the context of His life and His word. He started to take me on a long, painful and glorious journey. I have spent hours in study and prayer every day for three years. You can’t spend that much time with our precious, loving God and not be changed. While our physical situation was still horrific every day, I began to see things from a different perspective, one that was filled with hope.
It was HARD, and it was a FIGHT. It is an ACT OF WAR to choose hope when all of life is telling you there is no reason for hope. (If you would like to read more about how I fought my way out of the darkness, you can find that in two parts, Part 1 and Part 2. I pray that my experiences will help others.) Some of you are in this place right now.
Deep down I knew that Carson would not always be sick even though the doctors say his condition will be life-long. God told me from the very beginning it would be a fight, and not to believe everything we heard. We’ve worked hard in not taking on the labels that doctors wanted to give him. I couldn’t bear the thought that my son would take on a disease label for the rest of his life. I don’t believe that just because a doctor says something is true, that it automatically is. While I have believed that Carson will be well again, everything in our physical circumstances has screamed the opposite. Maybe people on the outside think I am simply in denial. All I can tell you is through everything there has been an underlying “knowing” that it will not always be this way.
I’m here to tell you that God will meet you where you are, if you take a step towards Him. His heart is so full of love for all people. He hears you. He sees you. You matter.
Over these years, God has taught me SO MUCH. Mostly about the layers of junk we believe about Him that keeps us from having a close relationship with Him. He’s also taught me much about how He wants his people to be free in body, soul and spirit.
I am starting this blog because God told me to do so. I just want what He wants and to share whatever He wants to say. My only intention is to do what He is asking me to do with as much transparency as I can. My life is completely His.
The subjects I write about may not appeal to everyone, I totally get that. My years of pain have brought me to the place where I pretty much have little tolerance for meaningless conversation or trivial, every-day life subjects. Long term suffering does that to you.
I can promise you that I won’t write unless I am compelled by Him. When the Spirit is involved words can carry a power and a weight for the benefit of someone else. I have studied several hundred books in the last few years, and when the Holy Spirit is on something that He wants me to know, I can feel it. When He isn’t, the content can be good but it just doesn’t move me. Personally, I am always looking for that which comes out of people that have spent time with Jesus.
Most of the time God talks to me in the shower. I’m not even kidding. I don’t know why He does this, but I believe He thinks it’s funny. God is always in a good mood, you know. Maybe today you need to know that. That doesn’t mean he is oblivious to suffering, it just means that He is always the redemptive answer.
I can tell you this one thing that God is passionate about: a close relationship with Him is the most important journey you can ever take, the most fulfilled you will ever be, EVERYTHING else pales in comparison. This is available to every single person on the planet. I am sure we will be talking about this, some of our personal journey and some completely unrelated but interesting things He wants to talk about.
As for my son? He is now 18 and still very ill. The medications that he takes keep him from having to live in the hospital, but give him no quality of life. His daily existence is painful. He remains physically chained in bathrooms. I am awake during the night, every night praying with him and trying to make him as comfortable as possible.
I live both completely heartbroken and full of hope. Those two things can coexist.
BUT, you will want to stay nearby for the rest of our story. There are amazing things we know that God has told us are coming. Carson will be completely well again, and he has a future. Even in the last months, He has confirmed this to us in at least five different ways, personally and through different people that don’t even know each other. Carson believes this completely and without reservation too. In fact His faith has been the most remarkable thing I have ever seen in my life.
I’m honored to meet you. Thank you for taking the time to be here. I’d love to hear any thoughts you want to share with me.