Yet another crushing blow came to us one week into Ethan's
NICU stay. I had been taking clothes down everyday in the hopes that they would eventually let me dress him. Being
an x-ray tech, I was only taking clothes I knew would be x-ray compatible-no 'snappy jammies' or zippers. Finally, the
night nurse called home one night about 10:30pm to tell me she would be giving him a bath, and if I wanted to come down
and help, I could dress him in some big boy clothes when we were all done! I was thrilled!!
I bathed him around all his wires and CPAP nasal prongs, and washed his gorgeous curly
strawberry blond hair and dried him all off, combed his hair and FINALLY dressed him! This was really the first chance
I had to see him in all his glory-to count all his fingers and toes, check out his long arms and legs, his cute little baby
bottom, etc., etc...
Since his admission they had been saying he had 'dysmorphic features'; low-set ears,
wide spaced nipples, a sacral dimple, 'curly toes', wider than normal mouth-all the stuff any parent thinks is just "newborn
funnies". These features had prompted genetics to get involved in Ethan's care, and thus have his chromosomes drawn
and sent to be analyzed.
I knew from his birth something was "not quite right", I even showed friends who visited
me at the hospital a picture of his toes, swearing they were deformed (or the one attribute he inherited from his Aunt Kim
Gunther!) Everybody thought I was crazy, but having worked with kids for 4 years, you begin to notice the subtle differences
they were seeing in my son.
My fears were confirmed that night. The doctor in the NICU came over to tell me
the results of Ethan's chromosome test had come back that day, and he was missing a portion of the long arm of the 18th chromosome-
WHAT!?@?#?@><!?
he continued on with "developmental delay, feeding issues, chance of being autistic,
hearing loss, vision loss, hypotonic extremities......"
and then he lost me.
As I drove home from the hospital that night, in the cool April air, with all the windows
down, I sobbed so hard, I never thought I would make it home.
Did I pass this on to my son?
Did Brian pass this on to him?
Will he live?
If he does live-will he ever walk? Talk? eat? smile? cry? laugh?
Will he ever say Mommy or Daddy?
Will he know us? his brother and sister? his aunts and uncles?
his cousins? his grandparents?
Will he see? hear?
Why?Why?Why?Why?Why?
What have I done wrong in life to deserve this?
I had two other normal (relatively) children-I had chosen not to do the AFP test-I could have known
ahead of time!
And then it hit me-did it really matter?
If we had known ahead of time-what would we have changed?
NOT A THING!!!
I decided right then to find out all I could about 18q-, and how many other children were affected?
to what degree? can Ethan 'beat' this?
In my mission for knowledge, I found a wonderful message board of other 18q- parents from all over
the world! There are only about 1000 diagnosed 18q- kids worlwide, and I have soaked up all the information their parents
have so generously shared with me. If I have a question about something Ethan does or doesn't do-I don't call my ped.
I get online-and I ask the experts! The parents who have lived or are currently living the same way we are-day to day!
The parents who know that the first time their child reaches a milestone-it is nothing short of a
miracle.
The parents who know that to hear their child say "mommy" for the first time will be the sweetest
sounds any human has ever made!
The parents who know that to be the parent of a special needs child-takes a very special parent!
Ethan may never do the things our other 'typical' children do with ease, but he will be encouraged
to do whatever he wants to! To dream big and go for it with everything he has, and to know the whole while that we support
him, love him very much and are with him every step of the way!
