One Reason Why I Know Fear Never Pays

"We just want you to head straight over to the emergency room this afternoon and get some pathology work done." Our pediatrician said to us. He was pretty up beat and I didn't see a need to get nervous. In fact I assumed this action was simply routine. We drove down town to the state children's hospital where we had been referred. We both looked at one another strangely when we were called back almost immediately and quickly by passed triage and weren't assigned the open ER standard rooms (curtained beds with patients sitting on them) but a private room. I don't remember exactly what the tag next to the door said, but it might as well have been a beacon for "compromised immune system" as we learned later this was the room the doctors take the cancer kids.



I simply accepted our "private room" and sat down to watch the television with my 10 month old on my lap. Quickly though a nurse came in and inserted a huge IV needle into my babe's arm, splinting it first so he was unable to bend or move his arm at all and forcing us to lay him down alone on the bed in the room. He was pretty upset at this point and I can honestly say my acceptance of everything was waning. A resident came into our room and told us they were going to take some samples of Silas' blood (yes I was a first time mom, 22 at the time) and then he said something that gave me pause. "Leukemia" started getting passed around between the doctor and nurse. I stopped the resident quickly and asked him what the whole thing was about. He said "The doctor didn't tell you?" He paused looking askance at me. "No, the doctor didn't tell me anything but that we were running some tests!" I emphatically replied. "Well, he may have leukemia." I just stared at this doctor in training, my eyes quickly filled up with tears as I contemplated the reasons why I was in the "private" room. Why my son had an IV at 10 months. Why. Why. Why. And began to cry.

The doctor, who was not much older than I was at the time, tried to come closer to hug me, but I felt as if I had been slapped by him. I turned instead to my husband, acting very unbelieving I might add, and asked the doctor to leave. They took the blood (a lot) and we waited. We waited hours and hours. At least five at the hospital, but it was probably more. At the end of that day we knew that our son didn't have one type of cancer, but we wouldn't find out until the next Thursday if our son had another type of cancer. I remember that weekend and the following three days as a ferocious battle. My son. My baby. My child. My son. My. My. My.

And I realized he was much too much attached to me--in my own mind--than was safe for my heart and this attachment was toxic for my faith. A three day battle ensued which entailed a fight over boundaries where God and my son were concerned. On the Wednesday night, before the Thursday we would find out the results, I battled for several hours, late into the early morning. I took probably three showers, hot water helps me to think better :). I prayed, pleaded, lets face it, I tried every ungodly tactics to change my reality. My son was mine and I was terrified. Totally lost in a sea of fear. That night I was finally able to let go of my strangle hold that drove my relationship with my first child. I allowed God to take precedence in the life of my child, a position he always held, and simply bear up for the wave....whatever it would bring to my shore.

The next afternoon the hematologist called our home and spoke with my husband. "Silas does not have leukemia, but he does have a very rare auto immune disorder. It's called Primary Autoimmune Neutropenia. Not many people have this disease. It is when his own body creates antibodies which kill his neutrophils. So essentially an ear infection or diaper rash could kill him. If he has any kind of fever bring him in immediately for a blood test because if he has a bacterial infection he will have to be hospitalized for at least 2 days to fight the infection with antibiotics. We are setting you up an appointment time at our office to get more information and blood work done. Okay?"

From relief I quickly flew into another world of fear. At every moment my child could die from bacteria! My child wasn't one of those babies who hated dirt, or avoided grass. He would eat dirt AND bugs frequently! What was a girl to do? What did this mean for friends and church or any socializing? How much time would we spend in the hospital? One truth was glaring me in the face: Our life was going to change.

But not in the way I thought.

I assumed a greater level of control and vigilance would be the change.

But it was a polar opposite that occured.
Everyday I was forced to surrender.

We spoke with many trusted friends at this time and came to the conclusion that we could have a bubble boy and avoid life for him completely. Don't do parks or play dates or nursery or even church....to much exposure to deathly germs! Or we could trust the Lord with our sons life and continue to live our life, facing the hurdles that come from living in a fallen world one at a time....and trust me we knew the waves of reality would come.

We spent much of the next two years in and out of the hospital. Either hematology appointments or emergency visits, we became that family that all the nurses and doctors wanted to speak with because our son had such a rare disorder. We went to the cancer clinics because my son had a similar disorder to leukemia, only his wasn't cancer and the doctor thought he would grow out of it eventually. We walked past the wall dedicated to children who had lost their fight with cancer. I was thankful my son has escaped one disease, but I still had to face the daily danger of this other one. We had to have ANC counts done frequently to see how well he was producing neurtophils and see if his body was still attacking itself. We did many, many, many rounds of antibiotics and we spent a lot of time in the "special room" at the ER.

At around 3 years our son was cleared as barely normal, his neutrophils were producing within normal limits, but only just. This was a miracle for us. We were told at 6 or 7 he might grow out of this disease. But he had been healed early. Since that day we haven't had him on any antibiotics. Not even once. He has been so healthy we actually comment on it frequently. Because it is amazing and because we are SO very thankful!

"How could such a sick baby, be such a healthy little boy?" We have only one answer. God.

Our sons brush with death; without modern medicine it is safe to say he would have died from one of the the many, many ear infections or diaper rashes he was prone to. I look at him today and am thankful the Lord did not ask for me to surrender him yet. But I also know that I would have been sustained throughout if that possibility had occurred.

The biggest lesson we learned was that fear never pays. No matter the thing you are fearing, it cannot compare to the sovereignty of an almighty God. I know it's hard....it's SO hard! But at times we have to hand over our desires and our loves and our dreams to the Lord. He may require them from us, but he may also as easily allow us to steward them awhile longer. The main thing is that fear (of anything but God) was never intended to run our lives...God was. The sooner we learn that truth the more able we will be to bring holiness to completion in the fear of God. (2 cor 7).

One never knows what each relationship will bring to you, what the waves of life will wash up on your shore, or if those same waves will batter and bruise you. You may well be dragged into the sea and tossed around. You may even lose your fight with those waves. But one thing never changes, even though the sea does (constantly)...He never changes.