38 months ago, at 15 months old, our oldest son Ben was diagnosed with a Primary Immunodeficiency disease (PI). And for the last 38 months, Ben has endured numerous hospitalizations, surgeries, and other medical procedures to treat and hopefully reverse the disease. For the past 38 months, we have held onto the hope that Ben's immune system would start producing the antibodies that his body completely lacks, that Ben would "out-grow" this disease. We never lost hope, or faith, that he would be healed. However, yesterday, after another round of tests last week, Ben's hematologist/immunologist called to inform us that his lab work was worse than 6 months ago, and that there was sufficient evidence to prove that Ben will not "outgrow" or be healed from this disease. It was with great sadness that I took this phone call to learn that my child will live with this disease for the rest of his life.
So yesterday, oddly enough after my conversation with his doctor, Ben and I were talking about his port (he asks questions about it quite frequently). And I asked him why he has a port. And he answered:
"Because I am special and that is the way God made me.
And momma, did you know that God and Mickey Mouse
made my port together to help me feel better?"
So as we turn down this new phase of Ben's disease, and no matter how much this new phase saddens me, I have to remember that
God and Mickey Mouse are behind it all---
and they make us feel better.
If you would like to know more about PI, you can visit the website: www.info4pi.org.