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Excuse Me While I Cry

Excuse Me While I Cry

Excuse Me While I Cry

Well…if you will Excuse Me While I Cry, I would appreciate it.  Hunter’s teacher, Ms. Kim, sent this to me last week.  He spelled his name by himself for the first time ever.  Let me explain the “by himself” part.

Hunter has Opsoclonus Myoclonus Syndrome.  His condition is 1 in 5 million.  It affects everything from speech to feeding himself to walking, excessive shaking, low muscle tone.  Basically going from a 3 yr old normal child to a 3 yr old newborn who shakes violently.

Backend of Condition

The “front-end” of the condition is what I described (oh so briefly) above.  The “back-end” of his condition is low functioning, memory loss, learning disabilities, cognitive, and sleeping issues.  Oh, let’s not forget the rages and fits.

Anyway, when Hunter holds anything to write or cut with, a teacher will place her hand over his and put pressure on it.  He has hand/wrist/arm weights and he does use those but he doesn’t like too.  So now, they just do hand over hand to give him stabilization.

When he wrote his name, he DID NOT NEED any hand over hand.  He copied the letters he saw BY HIMSELF.  Alone.  WITH NO HELP!  I feel like I am screaming.  Frankly and unashamedly, I am!

Let’s Just Keep on Going

Now Remember

A year ago, we were told to bring him home.  That he would succumb to his condition.  Now, he is learning, growing, writing, and spelling his name!  God is SO GOOD and so faithful.  I am in awe.

He chiggers me so badly somedays.  I mean, you all know a 5 yr old can get all up in your stuff and jump up and down on your last nerve.  Clearly, in this video, he was wound tighter than a drum.  Yet, the alternative as to where he was a year ago.  I will take this wild child over that sad little boy any day of the week!

Miracle Child

I had a doctor tell my other mom last week that he was a Christian but that the day of miracles is over.  That he could explain everything with science.  God didn’t do miracles anymore…that’s why He created doctors.

I just smiled and said, “You should meet my son.”  He didn’t have much to say to me after that. Here is a video of him a year ago.  Now, tell me that my God didn’t and isn’t performing a miracle in this child?

Related Posts:

Reflecting on an Anniversary I Would Rather Ignore

Overwhelming Sadness

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