31 for 21 Challenge: Day 1: DS Awareness

October marks Down syndrome awareness month.  I have decided to, once again, participate in the 31 for 21 challenge.  This means that each day during the month of October, I will post a fact/thought/etc about Down syndrome.  It is all in an effort to raise awareness for Down syndrome.

I was twelve weeks pregnant, when the word 'markers' was used as a warning.  A routine test indicated that the skin of the back of Josiah's neck was too thick.  This was the first possible sign of a 'problem'.

As the next several weeks passed, more markers became evident.  Josiah's leg and arm bones appeared shorter than 'normal.'  The bridge to his nose appeared (possibly) flatter.  He appeared to have a hole in his heart.  As the number of markers grew, so did the chance of a Trisomy 21 diagnosis.

At 19 weeks gestation, we decided to have amnio.  We hadn't had the test with our first two boys.  This time, it seemed the responsible thing to do.  We knew it would either confirm or disprove the theory of a chromosomal abnormality.

48 hours after the amnio, our OB called.  I think it was the only time he has ever called our house.  The preliminary report was in.  Josiah, in fact, had three copies of the 21st chromosome.

We were relieved that it was Down syndrome.  Trisomy 13 or Trisomy 18 were two possibilities we had feared.  It was neither; We were relieved.  That was on a Wednesday.

On Sunday, we decided to share the news with family.  

At no time did we ever consider the possibility that we wouldn't keep, and raise, this life we had been gifted.  Any suggestions to the like we immediately, and vehemently, discarded.

As Josiah nears his second birthday, I remain in awe of a beautiful boy with an extra chromosome.  He has added life, love, laughter, and spirit to our home and family.

We have no regrets. 

31 for 21 Blog Challenge: DAY SEVEN: The Creed

Today, I just want to share this great poem:



The Creed of Babies with Down Syndrome My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

- unknown author

Our First Buddy Walk and the 31 for 21 Blog Challenge

Today was our first Buddy Walk.  It was a beautiful location, in a small park, overlooking the Atlantic ocean.  Unfortunately, it was in the 50's and rainy.  The weather could definitely have been nicer.  However, the spirit of the walk's purpose was undeniable. Tents were set up to keep tables (and people) protected from the rain.  Posters of individuals (Josiah included) were carefully displayed around the park.  People were energetic, happy, and enjoying themselves despite Mother Nature.  Even Elmo and a fire truck showed up to keep the young ones entertained.  The rain stopped no-one from walking. 

Eventually, the rain gave way to sun.  The children played.  The adults socialized.  The rain returned.  We decided to call it a day.  We had stayed for 3 hours.  We were wet, tired, and getting cold.  The kids felt the same way we did.  We packed up and headed home.  We are grateful for the Buddy Walk, it's hosts, it's participants, and to all whom it's meant to benefit.  Now, we will look forward to next year and hope that the weather cooperates with us.

Tomorrow is Monday.  The big boys return to school; one has a field trip.  EI appointments resume.  All in all, it is shaping up to be a relatively mellow week.  We have no 'extra' stuff going on.  Perhaps, I'll be able to catch up on some much needed chores and cleaning.

Of greater importance, tomorrow is October 1st.  It is the first day of October.  October is DOWN SYNDROME AWARENESS MONTH.  So, I am joining the 31 for 21 blog challenge.  That means every day, during the month of October, I shall make an entry in this blog.  I will do my best to keep them interesting and informative.

Until tomorrow my friends :)

Falling Back into the Swing of Things

Now that the kids are getting older, I realize how busy life can get in September. 

We celebrated a 'first' anniversary - remembering the life of my oldest brother.  He made choices we didn't understand.  In September of 2011 he died, on the streets, at the age of 50.  Although I don't miss the nonsense, I do miss him.  I miss my brother.

Our oldest began Kindergarten.  Here, the children attend full-days.  He takes the bus to and from school every day.  He leaves at 7:40am and arrives home at 3:10pm.  He is doing well.  He is already recognizing more letters and is proudly demonstrating math skills he has learned.

Our middle boy began early preschool.  I wish the transition to school had been as easy on him.  I don't know if it's been harder on him, or us (watching him struggle).  We're in touch with the school, the administration, and the teachers.  He's already turned a corner.  We're waiting patiently to see if things improve further; we hope they do.  (Early Intervention) EI continues to work with him on his speech.  One recent, and major, accomplishment has been his willingness to say goodbye to his binky (except at night).  This, in itself, has led to an improvement in speech.  We're hoping for major strides in the next three months because in December he will age-out of EI.

Josiah continues to amaze us!  We finally had his 'six' month pics taken.  He was 10 months at the time, but who's counting.

Josiah continues to receive two EI visits per week.  One from K (his child care specialist); the other from D (his physical specialist).  Every other week, C arrives for OT (occupational therapy).  In the coming months, he will begin receiving speech therapy.  The progress he is making is astonishing (pics below).

Our first Buddy Walk is next week.  We are tremendously excited about it.  I'll be sure to tell you all about it.  We can't wait!!!!

Next month is sure to be a great month.  October!!!!  It's Down Syndrome Awareness Month.  Josiah will also celebrate his first birthday.  Amazing stuff!!!

Finally, for those of you who enjoy pics.  Here are some recent ones (mostly taken during Josiah's EI sessions):

Here, he demonstrates his ability to proudly hold his head high.  His arm extension is wonderful!  Belly time has become fun for Josiah.  Catching him on his belly is actually rare these days as he loves to roll now.  Gates have become his best friend (as they constantly save him from getting into forbidden areas).  It's no longer uncommon for us to turn our back, only to find him on the other side of the room mere moments later.

The task of sitting is an obstacle anxious to be overcome.  Josiah is starting to understand its importance....if only the balance would cooperate.  With a toy carefully propped, he does quite well.  It's only a matter of time before he's sitting independently :)

"Look, Mom!  Only one hand!"  It's a good thing that K is holding on.  Josiah doesn't realize that his ability to fall over is greater than his ability to sit lol :)

This isn't the best pic of Josiah's face but it clearly shows that he is now tolerating weight-bearing on his legs/feet.  This is a huge step!!!  It's very exciting.

Josiah is learning what it feels like to bear weight on his knees.  This kid is such a trooper.  He is manhandled frequently and tolerates it like a champ :)

This was taken yesterday as our family enjoyed a much needed-day-to-ourselves outing.  Fun was had by all.

Updates coming soon: Weight and MD stuff.....

October's goal: Daily blogging..... :)