The first time I heard the saying, “happy sad” was from the Amy Grant song So Glad. This was back in 1983 and I was going through a very dark year in my life. And this song and those words spoke volumes to me. Because that is exactly how I felt – happy sad.
Yesterday I felt that way again. I took my daughter, Narissa, age 33, to the doctor. This doctor is a specialist of immunology. Narissa has been diagnosed with Common Variable Immune Deficiency. Basically meaning her entire immune system is bad. The little guys that are suppose to be guarding her body from the big bad everyday germs are sleeping on the job. They may not even be sleeping, they may have vacated the premises. They suspect this is why Narissa has had non stop 24/7 head pain and many other issues for 10 years now.
Knowing Narissa’s childhood physical problems I asked if this is some diagnosis that kids can be born with and if so what are they symptoms. As the extremely kind and knowledgeable nurse started giving the deluge of symptoms, in my mind I was seeing my son, Byron, as a young child. As most of you who have read my blog for anytime know, Byron passed away last year, 10 days after receiving a heart transplant. He was 34 at the time. Both Byron and Narissa had many of the symptoms Nurse Monica shared with us. Then she summed it up by saying many of the children that have this immune deficiency diagnosis have cardiomyopathy when they get older. Which all has to do with a heart valve problem. Byron was diagnosed with cardiomyopathy in his early 20’s and had this heart valve problem.
I shared with Monica a little bit about Byron’s physical history and shared that his cousin was also diagnosed with cardiomyopathy at age 14. She then said that this immune deficiency has been genetically traced back to people from German descent and asked if our family came from German descent. Well pretty close, my dad’s family came from
One of the major symptoms of immune deficiency is the body’s inability to fight infection. To this day, even after an extremely thorough autopsy, the doctors do not know why Byron died. Their best guess is that the infection they thought they had fought off with multitudes of antibiotics right after his heart transplant came back with a vengeance and took his life in a matter of minutes.
I am so happy that after 30 years of stomach problems with no cause and after 10 years of non stop head pain with no cause, Narissa has a diagnosis that makes sense. And a diagnosis that can be treated, even if she receives treatment for the rest of her life. But my heart is broken once again to think if we had had this knowledge when Byron was alive, he may still be alive today and leading a productive life.
But in it all, I still confess “God is Good” and “His ways are not my ways”, Isaiah 55:8.