02/17/10 Begin Hell Week

Today we got a test back showing an abnormal result. Unfortunately it's one of the copper tests. Eli's Ceruloplasmin is off the charts low. The geneticist now thinks Eli might have Menke's disease. Menke's is a terminal disease.

Ceruloplasmin is officially known as ferroxidase or iron oxygen oxidoreductase. It is the major copper-carrying protein in the blood, and in addition plays a role in iron metabolism. Ceruloplasmin carries 90% of the copper in our plasma.

Any amount of reading on-line will tell you that copper disorders are particularly bad and Menke's is one of the worst. We're now facing the possibility that our son will die and all we can do is sit back and wait to see what Eli's actual copper test reveals.

I'm finding it hard to do anything now but stay with Eli. I've been trying to work as much as I can from the hospital and both Patricia and I have been trying to take care of Ian and Obie but we're having a rough time today. Both of us just want to hold Eli and take care of him. We are not prepared for "bad news" of this magnitude. This is truly one of the times in life when you simply have to put your faith in God that there's a plan for you and your child.

Patricia is more outwardly spiritual than I am. She is a practicing Catholic who does her best to attend church at every opportunity. She participates in a Bible Study Fellowship and leans on God a little more than I tend to. I've always believed in the teachings of the Bible and I consider myself Christian but I haven't always been a big believer in the organization of religion. Jesus preached to the masses in the streets, baptized people in the rivers, and performed miracles on the road. For me religion has always equated to quiet reflection and I'm a firm believer that if you have a keen eye and you look hard enough you can see the Holy Spirit at work in everyday life. Conscious thought and the embodiment of soul can't be defined by pure coincidence or evolution without a greater belief in a higher power. That sums up a little of what I believe but I won't go into a lot more detail.

Needless to say, times like these stress your faith and test your devotion to God. Patricia and I have had a few brief discussions on this topic over the last few days culminating today in our fear that our child might be taken from us. Why would God give us such a precious gift like Eli and then take him away in a short couple years? Could God be that cruel? There are a lot of things you could do at this point. I think it's safe to say we've been tempted to curse God and we've questioned our beliefs through this process but we're reminded of the story of Job from the Bible. If you're not familiar with the Book of Job go check it out. While it may be hard for us to accept whatever is in store for our little Eli we know that God has a plan. Even if we're not worthy of understanding that plan we both have faith that God will grant us the strength to endure and see us through this part of our life. After all, what else is there?