The next two days are going to be a little more stressful that normal.
wwww.carepages.com/carepages/Johnmichaeldp
You see, 5 years ago, we were told by several doctors, our pediatrician and two dermatologists, that our 3 month old son, John-Michael, might have a horrible disease called Neurobibromatosis. It is also called von Recklinghausen, NF, or Peripheral NF. It occurs in 1 out of 3, 000 births. However, there isn't a test you can take to know if you have this disease. You must wait for at least two of the markers of this disease to appear. The marker that John-Michael had as a baby was multiple cafe-au-lait spots (birthmarks). They also look for enlargement and deformation of bones (he doesn't have) , curvature of the spine, tumors in the brain (doesn't have) , tumors on the cranial nerves (doesn't have) , and tumors on the spinal cord (doesn't have). They also look for Lisch nodules, clumps of pigment in the iris (he doesn't have this) and freckles under his arms or in his groin area ( he doesn't have these). The last marker are tumors themselves. He does have one plexiform fibroma by his spine.. ... Thus, the diagnosis came when he was 3 years old. I tried to keep life as normal as possible and forget about NF when he was 3 months until we did get the diagnosis. You can't think about that everyday. I know I couldn't think about it each day...without going mad.
Now each day, since the diagnosis, I try to keep life as normal as possible. We have several play dates a week, have friends over, go to see friends, work, go to school, shop, etc.... normal life. I try not to think about all of the what-ifs. What if John-Michael gets a brain tumor? What if the tumor by his spine paralyses him? What if the tumor grows into an organ and kills him? No one can live like that. I try to practice Psalm 62:8 "Trust in Him at all times." I try to practice Philippians 4:8 "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable -if anything is excellent or praiseworthy- think about such things." I find that when I am able to put that verse in action...I don't worry. I am content in today....I am even able to be happy.
Two posts down, you will see where I wrote about how risky loving really is...but to do it anyway. I was shocked that I didn't post how risky it is for me to love, really love, my son. Anyone who knows me....knows that I do. I am CRAZY about John-Michael. He is such a blessing to me. I often get from my friends, "how can you discipline him....he is just so cute. "
Tomorrow (Nov 5th) he has his big MRI's and then we will met with Dr. Boydston, his neurosurgeon, immediately after the MRI's. We pray that we find that all is stable and we won't need to think about NF for another year or so.
Back to Normal life, whatever that is...
Enjoy your week,
Rachel
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