And a Sword will Pierce Your Heart, Also.

Today is Rare Disease Day, a time to bring awareness to rare diseases like Dup15q Syndrome and   although I don't particularly like to use the term disease to describe Luki's condition, it is used to lump a large  group of genetic abnormalities and conditions of unknown etiologies that cause a disability whether it be physical or cognitive.  I'm not sure if I am supposed to say I "celebrate" rare disease day or "recognize" or "support" it.  Today in particular, it's hard to say I "celebrate" it when Luki has been screaming at the top of his lungs (seizure???denied access???pain???) half the morning as his 4 year old younger brother covers his ears with both hands and tells me, "mommy, Luki is having a seizure" and proceed to count the length of it just as he has seen his dad and myself do numerous times. I hate seizures and I hate that Tae is starting to feel bothered and startled by them. I'm pretty sure Luki thinks it sucks, too if only he could tell me so.  

The Bible tells a story of Mother Mary visiting the temple at The Presentation when she is near term of her pregnancy with Jesus and being told by the prophet Simeon wonderous things to come for herself and the baby to be born.  

Luke 2:35

He said to Mary, the baby’s mother, “This child is destined to cause many in Israel to fall, and many others to rise. He has been sent as a sign from God, but many will oppose him. As a result, the deepest thoughts of many hearts will be revealed. And a sword will pierce your heart also.”  

(Another version)

Then Simeon blessed them and said to His mother Mary: “Behold, this Child is appointed to cause the rise and fall of many in Israel, and to be a sign that will be spoken against, so that the thoughts of many hearts will be revealed— and a sword will pierce your soul as well.” 

And a sword will pierce your soul as well.  What a horrible thing to hear when a woman is fully ripe to give birth to a child. The Rosary starts with the mystery of the Anunciation but maybe it should start with the Presentation to really pay homage to what Mother Mary fully signed up for and her willing sacrifice and obedience to God's will even whilst in great fear and anxiety. 

I remember first getting Luki's Dup15q Syndrome diagnosis from the geneticist.  She read word for word from a piece of paper which looked like a copy from a textbook.  Every word she spoke just registered in my ear as "and a sword will pierce your soul as well."  

"Mrs. Ahn, your son has a condition called Dup15q Syndrome and he is at high risk for mental retardation(yes, she used that phrase), epilepsy, autism  (and a sword will pierce your soul as well).  Motor impairments are very common (and a sword shall pierce your soul, too), he may be nonverbal and may or may not be able to walk (and a sword shall pierce your soul, too), he will have gross and fine motor skill delays along with behavior issues (and a sword shall pierce your soul, too). He may also experience Attention Deficit Disorder, anxiety and gastrointestinal issues are very common (and a sword shall pierce your soul, too)"

At least, Mother Mary got to hear of wonderful and amazing things her new child will do, not just the doom and gloom.  Unfortunately, the geneticist didn't fill me in on all the wonderful things that Luki will do in his lifetime but delivered only the last punchline of suffering of both mother and child.  Much like what Simeon revealed to Mary, disabled people like Luki are here to reveal the thoughts of many hearts but also be looked upon poorly by many.  Is it too presumptuous to compare my situation to Mother Mary?  I think not, everyone can relate at some level to the divine and Jesus even said that with the power of faith we can display even more miraculous powers than he.

So I end this entry with "Happy" Rare Disease Day because God knows we can always use some "happy" in our lives.