Wednesday, April 10, 2013

Reflections in the Mirror

Did you know that 19th century farmers believed that a baby shouldn't look in a mirror until the age of 1???  If they did, "it meant death."  The reasoning was that young souls were only loosely connected to a body, therefore a soul could easily become 'stuck' in the mirror.  Well, I guess I wouldn't have made a good 19th century farmer lol.

Last week, we returned to our favorite playgroup.  It was the first one of this session (they were closed for a few weeks due to MCAS).  We arrived on a few minutes early.  Josiah was happy to be there.  He spent an hour crawling around, playing with toys, and interacting with anyone who would pay attention lol.  He was having so much fun.  In the corner of the room, there is a climbing structure.  On it a platform with a mirror.  I had yet to place Josiah on the structure.  I decided to give it a whirl this time.  I picked him up, sat him on the platform, and pointed to himself in the mirror.

The moments that followed were magical.  Here are a few of the great ones:

If playgroup had been endless, I could have sat there for hours just watching Josiah watch himself.  It was pure ecstasy.

This video captures the magic.

I just love moments like these.

Josiah - Each time you look in the mirror, may you see your full potential.  May you see the amazing person you are.  May you truly know how much you're loved <3

Friday, April 5, 2013

WDSD 2013 Video

Cities all over the world celebrate Down Syndrome on 3/21.  Many of them put together slide shows of the beautiful children we celebrate.

This year, our local group put this video together.  Josiah is in it.  How many times can you find him???

The video is approximately 15 please plan accordingly :)


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!

Facebook and Towheads

On February 6th, Up The Down Staircase officially joined facebook.  Here is the link for anyone who is 'liking' our page there :)!/UpTheDownStaircase

I post a few pictures (or videos) per week on the happenings of Josiah.

It's short.  It's sweet.  It's right to the point.

One of my first questions on FB was this:
"She called Josiah a "tow head". Insulting? Endearing? or simply Ignorant?"

Let me start from the beginning.

Josiah started receiving speech therapy from EI.  On February 26th, the new worker (speech therapist) came out to the house for her very first visit.  

In the course of the visit, she said (to Josiah) "You're the cutest little toe head I've ever seen." 


I had no idea what that meant.  I had never heard that expression before...

I quickly swallowed my tongue in an effort to suppress my mouth.  I immediately reached for my phone and began 'googling' the term.  Here's what I found:
"In colonial times, families grew their own flax to make into fabric for clothing. Transforming the flax into thread was a complicated, involved process with many time-consuming steps. After the flax was harvested, it was soaked in water for several days to soften it so the inner fibers could be removed from the stalk. To separate the long, thin fibers from the shorter, coarser ones, the flax was pulled through a bed of nails or combed in a process called "towing." The shorter fibers that were extricated were of a lesser quality and were called "tow." This led to the term "towheads" to describe people, particularly children, whose hair resembled these strands.

Our favorite online dictionary,, provided further support and evidence for this explanation. The definition for towhead reads:
Main Entry: tow�head
Pronunciation: 'tO-"hed
Function: noun
Date: 1829
a head of hair resembling tow especially in being flaxen or tousled; also: a person having such a head of hair
The dictionary dates "tow" to the 14th century and states that its origin is "Middle English, from Old English tow-spinning."
As I mentioned, I also took to facebook.  I asked what people thought.  Apparently, I was behind the times on this one.  Friends had heard it, knew what it meant, and found it endearing (for the most part).

In this day of political correctness (which I usually don't adhere to), it's sad that I was so quick to question.  But, "tow head?"  It just doesn't sound endearing to me :)