Preparing for the Big Question

It is Sunday morning, and I plan to spend the day rejoicing and celebrating my family. Our baby, Beau, is 6 years old today! The plan is Sunday school and church this morning, and the symphony this afternoon followed by ice cream at Goodtimes. (Beau chose the symphony, believe it or not!)

Simon is a bit tired, but other wise doing well. His spots are all but gone. (They come and go, but have been pretty significant the last few days.) His granulocytes, the part of the white blood cells that fights illness and infection, are high enough that Simon can go out to church and perhaps even the symphony. (We can sit in the back and away from other people.) His were at 1.5 on Friday, up from .6 on Tuesday. At current level, small gatherings are okay. When the number gets down to around .5, he will have to avoid even small groups.

Simon has been in good spirits, for the most part, since this started. He has had a few panic attack, but he is feeling pretty good. Because he doesn't feel sick, it is hard for him to understand that he is sick. He knows that he is running out of blood and that his bone marrow is not working. I suspect that as we progress, he will begin to comprehend the seriousness of his illness.

As a mother, I myself am trying to comprehend the seriousness of what we are facing. Only 500-1000 people a year are diagnosed with aplastic anemia in this country. Without treatment, survival rate 1 year out is only 26%. Thank God for treatments! As late as the 1980's aplastic anemia was almost always fatal. Thank God for modern medicine!

I will have more questions for the doctor when we go in on Monday. My understanding is that Simon's current treatments are not likely to result in a cure, but rather buy him time while we look for a bone marrow match. Hopefully, we will have the results of the blood test that were sent away. Even then, we are unlikely to have an answer to what triggered this.

I am fearful that as Simon begins to understand more about his illness, he is going to ask me the "big" question. "Am I going to die?" How does a mother prepare her heart for that question?

"Be strong and courageous. Do not be afraid or terrified because of them (or aplastic anemia), for the Lord your God goes with you; He will never leave you nor forsake you." Deuteronomy 31:6

"The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid. Do not be discouraged." Deuteronomy 31:8

"I will never leave you nor forsake you." Joshua 1:5b

When I looked up the phrase "fear not," it came back with 231 references. I have to hold tightly to that. How can this mother's heart tell her son to "fear not," when she is so very afraid?

I need to find courage in the fact that I am not on this journey alone. God is always with us, and friends and strangers have surrounded us with support.

And I will hold tightly to God's promises even as I hold tightly to my ill son.