Birthdays, Blindsides, and Goodbye Kisses

We couldn't believe how quickly September had come and gone.  We were in full-scale planning for all things Fall & Winter.  October is a jam packed Birthday month.  Josiah was about to turn 4.  My birthday is at the end of the month.  We had a birthday celebration planned.  Our annual trip to the pumpkin patch was approaching.  We decided, this year, to bypass the mall trick-or-treating and take the boys "real" trick-or-treating - we were going with Josiah's best friend & her family!  Things familiar and new - we couldn't wait.

The boys had their flu shots.  Carl had a few MD appointments.  By Columbus Day weekend, we all had colds.  New England living makes this a common occurrence - cold one day, hot the next.  This wasn't unusual, nor did it concern us.

On Sunday, October 11th, family gathered to celebrate the 4 October birthdays.  It was a beautiful day.  Carl spent a lot of time outside with the boys.  We enjoyed good food, exchanged gifts, had cake, and celebrated a day of making memories.  The boys were happy.  I was happy.  Carl was happy.

On Monday, Josiah turned 4.   Carl had an MD appt.  I took the boys to a dentist appointment.  After, we met up with Carl at the YMCA.  We had registered the big boys for their first-ever mud run!  We spent a beautiful afternoon together.  It was a gorgeous day.  The boys had a blast and each won a medal.  Carl got a call, from his doctor, in the afternoon.  Carl had pneumonia.

Carl had gone through bouts of pneumonia countless times in his life.  This was not new to him.  It was not concerning.  A prescription was called in and we headed home.  The boys had school on Tuesday.

Tuesday & Wednesday were normal school days.  They were routine, at home, for Carl & I.  Thursday morning, we put the kids on their buses, for school.  Carl waved goodbye as the buses drove away - just as he does every morning.

Carl didn't seem to be getting better.  If anything, he seemed worse.  After some pleading, and a call to the MD, Carl agreed to let me drive him to the e.r.  We were sure he simply needed a more powerful antibiotic.  We weren't concerned.  Josiah and I brought Carl to the e.r. and said we'd see him later.

Carl was admitted to the hospital, for pneumonia.  He was being pumped full of antibiotics.  Friday, the boys and I went about our normal routine.  We talked to Daddy on the phone, Friday night.

By Saturday morning, I was concerned about Josiah's cough.  So, I bypassed the pediatrician and headed straight to the Children's Hospital.  I missed Carl & wished he were with us.  I thought about the last 10 years of Carl's health issues - chronic ulcers, several near death experiences, and several major surgeries.  He came through all of it.  He was a fighter.  This was just pneumonia.  This was nothing, comparatively speaking.

At 11am, we were still in the e.r.  Josiah had been seen but we were waiting for scripts, etc.  Josiah had bronchitis and an ear infection.  I realized that I had missed a call from the local hospital.  The message - Carl was in critical condition.  I called & spoke with the ICU MD.  Carl had strep pneumonia which had seeped into his blood stream; he was in septic shock.  I looked at the 3 boys through the window of that little room.  I couldn't believe what I was hearing.

We were able to leave a short time later.  Carl's brother was cutting a trip short; he was headed home to be with Carl. 

Carl's condition continued to spiral.  Strep pneumonia.  Septic shock.  Kidney failure.  Catastrophic medical phenomena continued.  I made two trips to the hospital to see him.  I kissed him, held his hand, thanked him for being my husband, thanked him for being an awesome father to our children.  I begged him to fight & told him how much we loved him.  His brother spent hours at his bedside.

On Monday, October 19th, at 8:13am - Carl took his last breath.

How had we gotten here?  How could I be saying goodbye to my Love?  How could this be happening?  One week before, we cheered our boys on during their mud run.  Now I prepared for the bus to arrive home.  Now I had to tell the boys that Daddy was gone.

A week before, it was picture perfect.  It was perfect until it was no longer.....

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 THIRTEEN: Birthday Weekend

I spent the first few hours Saturday teaching at the school of performing arts.  It was the first day of the new program - a musical theater program for children with Down Syndrome.  There are only a few students right now, but I know this will grow in time.  Class was fun.  The kids were great!!!!  This is going to be a blast.

I was home by early afternoon, and we spend a Saturday at home.  I keep marveling at Josiah - I am in awe of him; I am in awe of my three little guys :)

Tomorrow (Sunday), we are having a big family get-together for the "October birthdays."  In our family, there are four.  Josiah, my nephew, my aunt (who shares Josiah's birthday, 83 yrs apart), and me. 

Here's tonight's question....should I let Josiah do a face plant in a cupcake?

We allowed both our older boys to have their first taste of cake/frosting on their first birthday.  However, they had both had table food (even if minimal) by the time their first birthday arrived.  Josiah has not had the same experience.  He does very well with food, but it's been (primarily) baby food.  AND, he is still breastfeeding.  The older boys were walking at 11 months; Josiah is still working on being able to sit.  So.....what to do???

Regardless, I'm looking forward to the get together.  We're having another party later in the month.  For both, Josiah will wear his "birthday boy" outfit (a very cute one-piece outfit that James wore on his 1st birthday).

Looking forward, we have C visiting this week (occupational therapy) - she just asked for permission to complete a four-visit infant massage therapy with Josiah - I said yes, of course.  That will begin soon.

Beyond that....it's school for the big boys, EI (early intervention) for the younger ones, first teacher conference, fundraiser, and a trip to a Pumpkin patch with all three kids.  It'll be a fun week :)

It is late and I have a lot to do before the party.  I'm off to bed.  Sleep well my friends.

"Your birthday is a special time to celebrate the gift of 'you' to the world"

- unknown author

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

31 for 21 Blog Challenge: DAY ONE: DS and Breast Cancer

October 1st marks the beginning of National Down Syndrome Awareness Month.  It is also Breast Cancer Awareness Month (worldwide).  Therefore, I thought it fitting that I mention a link between the two that I only just learned about this morning.

A study was conducted in Norway and it's results published in 2009.  Here is a synopsis.

Researchers looked into the possibility that hCG (a prevalent pregnancy hormone) provided protection against breast cancer for the child-bearing mother.  Compared to 'normal' pregnancies, 'Down Syndrome pregnancies' yield higher-than-normal hCG levels from late 1st trimester to the middle of the 2nd trimester.  The study hypothesized that women who gave birth to children with Down Syndrome (DS) might have a lower risk of breast cancer than women who gave birth to children without DS.

The study examined all mothers of live-born children in Norway and Sweden from 1967-1973 through 2004.  The study period yielded the following results:

54,063 women developed breast cancer.
5,330 children were born with DS.
139 breast cancer cases were diagnosed in the mothers of DS children.

Adjustments were made for relative risks, risk factors, etc.

In the final analysis, results indicated that mothers of children with DS were at a 23% increased risk of developing breast cancer.  The increased risk was limited, however, to women who had a child with DS after age 30.  It also seemed to be confined to women whose cancer was diagnosed before the age of 50.

The original hypothesis that exposure to elevated levels of hCG may provide maternal protection against breast cancer was NOT supported.

An interesting addition....

In women with Down Syndrome (not the mothers), reported studies suggest that breast cancer is nearly 10x LESS frequent than in the general population.

“The more I read, the more I acquire, the more certain I am that I know nothing.”

- Voltaire

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 :)