Thursday, April 4, 2013

March Madness

For the first time ever, a month slipped away without me writing.  It's funny how often I think to myself, "I need to write in the blog; I haven't written in a while."  As fast as that thought enters my mine, it's gone.  Dinner needs to be cooked.  The kids need to be tucked in.  On and on the chores seem to stretch.  At the end of the day, my need for sleep supersedes the desire to write.  Each morning comes too early, greets me with the leftover chores of yesterday, and new necessities that lie in wait.  How I dream of having the time to write.  How I dream.... 

If this blog could only capture one tenth of what I think about....

I used to think that I was born in the wrong time.  "I was born for Vaudeville; I was born too late."  Decades passed with those thoughts in mind.  Of course, being a believer, I've always known that I was born exactly when He wanted.  However, what seems like a lifetime later, I see great reasoning.....Josiah.  Imagine if he had been born during Vaudeville time.  He might have ended up in an institution.  Perhaps, he would idled away his time hidden at home - a secret, kept hidden from the world.  His secret life would have been short.  The holes in his heart would have assured his brief solitude existence, on this earth. 

I think a lot about my brother, who died at 50.  I was eight months pregnant when I lost him.  Addiction stole him from me, from us.  It's ironic that he died one month before Josiah was born.  Scott always had a special place in his heart for the downtrodden, the gentle ones, the ones who may need a helping hand.  Scott knew that Josiah had Down Syndrome, but was never allowed to share in the miracle of this little boy.  I wish Scott could see him.  I wish Scott could be the Uncle he always dreamed of being (his addiction was always an obstacle).  Instead, he left us.  I like to think that Josiah needed a guardian angel so much that God gave Scott a special place in Heaven to look after Josiah.  In the first 4 months of life, how Josiah needed his guardian angel.  How I miss my brother....I want to start a foundation in his name.  I want to write a book about him.  Someday, both will happen.

The month of March celebrates "World Down Syndrome Awareness."  It occurs on the 21st of March.  3/21.  Three copies of chromosome #21.  That's the significance of the date.  This year, there was a campaign to wear crazy socks that day.  It was all in an effort to raise awareness.  Someone sees your crazy, mismatched socks & asks why.  You tell them all about DS.  Well, I didn't go anywhere that day (to speak of).  None the less, I was sporting great, crazy, colorful socks.  I took a picture of my feet & posted them to facebook.  I shall do that every year.  Won't you do it too?

I often think to myself, "I didn't know I wanted a child with Down Syndrome."  If you don't have a child with Down Syndrome, you may not understand that statement.  If I could take away Josiah's Down Syndrome, would I?  No, because he wouldn't be Josiah anymore.  Josiah is a beautiful boy who happens to have an extra chromosome.  He has blue eyes and blond hair (so blond that he has been called 'towhead').  He has a smile that radiates through the darkest of moments.  His laughter is contagious.  I wouldn't take away any of his traits.  I wouldn't change any thing about him.  He is pure delight.  He is miracle.  He is a true gift from God.  It's just that simple.

March's schedule continued uninterrupted.  Josiah has his weekly meeting with his EI (early intervention) child care specialist (K).  He meets weekly with his physical therapist (D).  He meets every other week with occupational therapy (C) and with speech therapy (P) in between.  He did, however, start group at EI....movers and cruisers.  I just love the name.  It's a bunch of kids crawling, moving, and toddling around a great space.  We're only a couple of weeks in, but it proves to be a great group.  It's run by a physical therapist at the EI center (unlike his individual sessions which are at home).

Josiah is now crawling like a maniac.  He can disappear from a room before you realize he's moved.  He is grasping toys very well.  He now enjoys throwing objects's too cute.  His purposeful release is getting better and he truly enjoys playing.  He eats nilla wafers like they are going out of style lol.  We are slowly introducing him to new things.  He will stand and hold onto me.  When D tries this each week, he screams bloody murder - he's a manipulative little boy (hahaha).  He's quickly approaching 18 months.  In May, he'll have his next assessment with EI.  I can't wait to see the results of the new assessment.

I am happy that April has ushered it's way through winter.  The snow has become a nuisance.  I am ready for warm weather, sunshine, playgrounds, and sitting outside.  Josiah starts another playgroup (non EI-related) this morning.  Unfortunately, that means this Mama needs to get a little boy ready for the day.  I'll update again soon.

Be well, my friends!

1 comment:

  1. It is nice to see you are back on:) M sister Desirai died when we we're younger. She was my best friend. I have this warm feeling that she is my Levi's guardian angel. When he was smaller he was always looking over my shoulder smiling and talking. He looked like he was seeing someone. He still does it a little but he did this a lot when he was smaller. I know he is seeing his guardian angel....
    Hugs for Josiah,
    Jody and Levi