Our Story, Part Two

It was a few days into Kaylee’s hospital stay before it truly sunk in with me that our diagnosis was most likely Crohn’s disease.  I believe that the doctors knew this from the start, but I had held on to the hope as long as I could.  I remember a doctor finally pulling me out into the hallway to make me understand.  He put it to me this way: “I understand that it’s not as simple as me telling you that she has asthma or something like that, but it’s not Leukemia either.  She’s not going to die.” 

I had what felt like an enormous lump in the back of my throat, and I could barely even speak.  Still, I remember trying one last time: “Is there anything less serious that it could possibly be?” 

“No, I’m afraid not,” he said.

With this news, I finally broke down.  This particular doctor was very kind and full of compassion.  He let me know that he and his wife had been praying for Kaylee.  I was truly grateful that he had been the one to finally deliver the news to me.  He stood there as I cried for just a brief moment before regaining my composure.  I did not want to look like I had been crying when I entered back into Kaylee's room.

For the remainder of the week, I kept my focus on her and on keeping her spirits up as much as possible.  I also put on a very good front for our many visitors.  It was when everyone had left and it was dark outside that I would think about things.  I would lay there and grieve for the loss of my child’s health.  This was not how I had ever envisioned things for her.  I knew I needed to trust God, but I wasn’t taking the news well at all. 

I did understand that it could be much worse.  Yet, I couldn’t help but think that if it was cancer, we would at least have a chance to fight it and a chance for her to be well again.  It was just so painful and hard for me to accept that she would be sick and struggling with this for the remainder of her life.  I couldn’t get past the permanence of it all.   

It was later during our hospital stay that I received a phone call with my first “warning.”  My brother called to tell me that one of his co-workers had Crohn’s and that she was now on a liver transplant waiting list because of the damage the medication had done over time.  I tried not to think too much about this, and quickly got back to caring for Kaylee.  That night as I lay there, however, I couldn’t get it off my mind.  I began to look up the medications for treatment of Crohn’s and read about all the possible long term side-effects.  The biggest problem for me was the fact that Kaylee was only 8 years old.

When her doctor came in to finalize the treatment plan for Kaylee, I remember he became very defensive at one point, as he explained to us:  “People are going to tell you to try other things.  They are going to tell you that this will help or that will help, but I do not want you to do anything without going through me first.” 

During this same conversation, I also remember that he became very annoyed when the hospital nutritionist entered the room.  Although the plan she gave us was completely different from what Dr. Robbins would give me later, this particular doctor did not want to discuss diet change at all.  He was adamant that Kaylee could eat anything she wanted once the medicine had begun to work.  I was honestly relieved to hear this at that moment.  I did not want her to be limited in what she could eat either.   We decided to go ahead with the treatment, although I knew there was still a possibility that God would lead me in another direction later. 

The seminar for Dr. Robbins was scheduled to be about 3 weeks after Kaylee was discharged from the hospital.  I was still going back and forth trying to decide if I was going to go or not.  I wasn’t completely convinced, and I did not want to waste my time.  It still sounded so extreme and radical to me.

During this time, I received another “warning.”  I had called a friend of mine to tell her that I would not be able to be in her wedding that was coming up because of Kaylee’s condition.  This was one of my close friends from high school, and I knew that she would be particularly empathetic, as she had faced many health issues herself growing up.  In fact, she had missed a great part of our senior year of high school because of illness.  What I didn’t know, prior to this phone conversation, was that her illness during our senior year had been a result of side-effects from the very medication they had just put Kaylee on.   Needless to say, when I hung up the phone with her, I had that feeling again that God was trying to get my attention.  This was a friend whom I had been in and out of touch with through the years.  It just so happened that we were back in touch at this time, because of her upcoming wedding. 

Although the results my friend had from the medication were extremely rare, God knew exactly how Kaylee’s body would respond to this medication over time.  If He was trying to warn me, I knew it was for an important reason.   I just had to be certain it was Him.

That night I said a prayer that was something like this: God, if you are trying to tell me something, I don’t want to miss it.  But this is so serious, and I don’t want to be misled either.  Please God, if this is You trying to warn me, I need You to confirm it to me one more time.  Please God, give me just one more confirmation so I will know for sure!   

The very next day, the confirmation came.  I had planned to homeschool Kaylee the upcoming year, and had joined a homeschool program through First Baptist Pinson.   I received a phone call from the lady who was heading up the program to check in on Kaylee and to let me know that she was praying for her.  She told me that she had just gotten back from a conference and that she had mentioned Kaylee during the time of prayer request.  She then told me, “I am hesitant to tell you this, but a lady approached me as we were leaving and asked me to please tell you to be careful about the medication that they might be putting your daughter on.  I didn’t even think to ask her what medication she was referring to, but I just thought I should tell you this.” 

I didn’t need to know any other details.  I immediately knew, in my spirit, this was the confirmation I had ask for.….