Spaceman, Part II

Wednesday afternoon the home health nurse came and showed all of us how to work the "mask machine."  Seems Ethan, for some reason, has jumped in with both feet - not that I am complaining, I just think it is strange.

He was very ready for bedtime after Church Wednesday night.


I don't think it looks comfortable at all, but it must make him feel better because he is asking for it at night.  When I go and check on him during the night he looks like he is sleeping okay.



The machine is on an auto pressure setting that ranges from 4 to 12.  It bounces back and forth all night, but stays on average around "7".  However I have checked in on him and it has been at 10.4.  We have a baby monitor in the room so we can hear if the emergency beep goes off, like if the electricity went off or something.

I hope we see a difference in how Ethan feels as the nights go by and he is established in a routine.  The nurse will be back on Monday as Ethan's mask is leaving a red mark on the bridge of his nose.

Heres to another night - with hopefully a less sore nose.  I was told to put cotton under the gel pad to take the pressure off the bridge.  We will see!

On Being Tall

While Ethan has the privilege of being "special", Jordan has the distinct privilege of being "tall" -  the tallest in the family at 6'5" .  It is a good thing he isn't a car.

On Being "Special"

Ethan is now at the age where Special Olympics can become part of his life.  I think what amazes me most about Special Olympics are all of the "typical" people who make it a part of their life.  It takes a lot of people who love our "special" ones, who make Special Olympics what it is.  This includes all of the many youth across the globe who love working with peers who don't have all of the abilities they have.  It amazes me.


The first time I went to a disability conference I was struck by two things:  First, how many disabled people there are in the world and two, how many people dedicate their lives to making the lives the disabled better.  It is times like those that I see really and truly how many wonderful and unselfish people there are in this world.

Ethan loves to go to Special Olympics events even though we are lame parents and don't help him practice on the off-season, although in our defense this is new to us too, and Ethan's abilities are more in the fine arts than athletics.  We realized this after the first soccer team we put him on.  When your child is more interested in the squirrels running across the field than the ball that is rolling across the field, that is your first clue.

Last week Ethan participated in a basketball skills tournament.  He was invited to help present the motto by giving it in sign language.  Since you can't hear the young man saying it, the motto is below:

Let me win. But if I cannot win, let me be brave in the attempt.

 I think Ethan's favorite part, if you want the truth of the matter, is conversing with the cute girls who volunteer to help :-)

So as we begin this journey into the world of Special Olympics we will keep our eyes and hearts open to the things that Ethan seems the most interested in.  In the meantime, we will continue to enjoy the journey :-)

Ethan with his aide, Mrs. Ava.