My Child: The Enigma

**Warning: You're about to see a glimpse of what I am struggling with these days. Please take care in how you respond. I know the Lord is in control of this situation and I trust Him completely. The following will give you a few of the ins and outs of details I need to come to terms with over the next few weeks.***

I've edited this to add that if you DO have some encouragement for me, please bring it on. I can use it right about now.


My child is an enigma to me and my husband.

We cannot figure him out. The doctors can't figure him out. I don't think he even has a clue as to how confusing he is to us.

When I took him to the doctor on Monday, he told me our last visit was on June 19th. That means that we actually achieved a record. In the last year since Sam had his very first illness EVER, which resulted in two febrile seizures (see sidebar for more details), his longest stint between doctor visits and illnesses was between June 19th and July 28th. That's 38 FULL days without seeing a doctor for an illness - but only 31 days without a low-grade fever/illness.

It was the best month too. We did so much and had so much fun during those 31 days. He learned a lot and grew by leaps and bounds. We almost felt like we were normal. But we are not.

The doctors always tell us that he gets sick the same amount that every other child his age does. Other kids go about two weeks to 14 days between illnesses. That seems awfully short to me. Bill just doesn't believe it. He thinks Sam is more sickly than other "average" children. I don't know what to believe.

What I do know is that he had 101.2F last night, but was fine all day today. At 4pm I took his temperature (rectally, as always) and it was 100F. At 5pm I took it again (because he felt a little warm) and it was 101F. I gave him some Motrin and it went right down and is still down even now (just took it while he was sleeping and it's 97.8F).

I will take him back to the doctor in the morning to see if anything has changed with his blood work. Hopefully they won't do anything too traumatic to him.

I'm concerned because Bill is leaving and I want for him to at least have the perception that we'll be okay before he leaves. But, I'm also a little concerned about what is going to happen while Bill is gone. Should Sam and I even consider going to Nashville, where Vanderbilt hospital has a great pediatric cardiology rhythm specialist, or should we stay here, where his doctors know his situation and can easily take care of him without me explaining everything over and over?

I'm no dummy - I realize that I am going to have to explain Sam's situation with every single medical professional, as that is necessary for legal reasons, but at least I will know HIS doctor has a clue. The entire office has a clue. What I'm mostly afraid of is another visit like the last one we had down in Charlotte. No one would believe me that his temperature needed to stay down. We argued and argued with the nurses, but they all thought he was just there for them to monitor his heart, not actively keep his temp down with cooling blankets and other methods.

It wasn't until the third day at Levine's Children's Hospital that they actually got a clue - only after his heart was shocked again and again from it beating too quickly.

Pray with me that his temperature will go down and stay down. And pray that he will be healed from this virus. And pray for me, that I will have strength from the Lord to deal with whatever life has in store over the next 12 days while Bill is gone.

I will always hold on to the verses in Isaiah 43- as they seem to be our life's verses since the few months before Sam was born. Here is the song we sing every day to Sam and to ourselves, knowing full-well that the Lord is in control of every situation we have, because we rely on Him and He is our strength. It's a little slower than the version we sing, but it's just as good.