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 SIX: What's in a Nickname?

This is my blog entry from February 14, 2012.  I thought it was worth the repost:

What's in a Nickname?

During our recent hospital stay, I was having a conversation with a nurse on the medical unit where Josiah was being treated.  She was a wonderful nurse & Josiah liked her very much, as did I.  We were chuckling over Josiah's hair (it's wispy and tends to stick straight up - much like a mohawk).  She was commenting that a lot of children with Down Syndrome seem to sport a similar hairdo.  During this conversation, she admitted that the staff tends to call these kids "Doodles."  At face value, I thought 'that's kind of cute.'  Perhaps I should have left it at that.

When I returned home, I thought of that nickname and decided to look up the word "doodle."  I know it means to scribble, etc.  However, I wanted to research the word further.  Here's what I found:

http://www.thefreedictionary.com/doodle defines the noun as being "A figure, design, or scribble drawn or written absent-mindedly.  The informal noun means "fool or simpleton" from the German dudeltopf.

http://en.wikipedia.org/wiki/Doodle defines the etymology as this: "The word doodle first appeared in the early 17th century to mean a fool or simpleton."

http://www.merriam-webster.com/dictionary/doodle defines the noun as "a minor work."

Perhaps, their nickname for DS kids is innocent.  This nurse readily admitted she knew not why they called the kids 'doodles.'  Perhaps the nickname has been used for decades and the newer/younger nurses have never made the effort to determine it's meaning or origin.

I'm not usually a person that focuses on "political correctness" and the like.  I certainly don't care what nicknames people use.

However, I think this is much different.  Here we have professionals using a nickname to define our children.  If the professionals use such a nickname, doesn't it merely fuel the fires of the ignorant?  90% of all DS pregnancies (that receive an early pre-natal diagnosis) result in abortion.  I firmly believe in a woman's right to choose.  However, if some of these abortions occur due to ignorance and misperception, isn't it possible that the professionals (whether they mean to or not) are contributing to societies fear and misperception of Down Syndrome?  I think it does.

Before the general public can ever change it's negative attitude about Down Syndrome, DS kids, and the parents that have chosen to give them life, I believe that nicknames like "Doodles" need to stop being used.

It's just my thought....

"Being ignorant is not so much a shame, as being unwilling to learn."

- Benjamin Franklin

31 for 21 Blog Challenge: DAY FIVE: Thankfulness

Yesterday was a whirlwind so day FIVE and SIX entries are being recorded today :)

There isn't a day that goes by, that I don't feel a tremendous amount of thankfulness for the blessings in my life.  It is so true that 'it takes a village.'  I believe that is not only true for raising a child, but in living a happy life.

Josiah was born with congenital heart disease (numerous holes in his heart), a problem seen in approximately 50% of children born with Down Syndrome.  At the tender age of 3 months, he underwent open heart surgery.  His heart was fully repaired.  I thank God that we live where we do.  We have access to the best medical care in the world.  Our son had a brilliant surgeon, received world class care, and was returned to us whole.

My parents recently found themselves on an incredible journey, this year, on the other side of the world.  While there, my Dad began not feeling well.  Luckily, there was a doctor enjoying the same vacation.  That doctor examined my Dad, provided some much-needed medication, and checked on him twice daily for the duration of their journey.  He offered his services with no expectation of reciprocation.

My husband has had a couple of close-calls.  Twice, with years in between, I have come close to losing him.  Again, we are fortunate to live where we do.  We are fortunate to have access to incredible care.  Twice, my husband has received world class care and been returned to his family.

Because of a few individuals, who are complete strangers, I am able to continue to share my life with those I love.

The few becomes a bunch, with a few added blessings.  A bunch becomes many when you add a few more.  It is never ending.  There is always something to be thankful for; there is always someone to whom gratitude could be directed.  Those people are never far from my mind, or prayers.

Behind every blessing is grace.

We are so truly blessed.

"Gratitude makes sense of our past, brings peace for today,

and creates a vision for tomorrow."

- Melody Beattie

31 for 21 Blog Challenge: DAY FOUR: Do you See me Mom? I'm Sitting!

Josiah had physical therapy this morning, as he does every week.  We were up by 6:30, changed, fed, and waiting for D by 8am.  D was greeted by Josiah's usual grins and giggles.

D came prepared today.  She brought hip helpers and a cute little vest.  We had discussed hip helpers before and the jury remained out as to whether or not they would be helpful.  Hip helpers are similar to biking shorts - made of spandex thus very tight.  Unlike bike shorts, the inner seam of the hip helpers are sewn together.  They are used to help an baby (especially with low tone) learn to keep their legs straight (as opposed to 'frog legs').  D has been impressed that Josiah doesn't tend to utilize 'frog legs' and does a fairly good job at keeping his legs straight.  It has been her contention that Josiah needed more trunk control.

Hence, the benik vest.  The benik vest (which I had never heard of until today) is designed to provide 'stability and comfort.'  The theory is that if Josiah can learn what it feels like to do certain motions without worrying so much about his body, his body will do more.  When he's not wearing the vest, his body will try to replicate the motions and work the necessary muscles to accomplish the goals.

Josiah has been doing a great job sitting (with support from D).  Over the weeks and months, we have seen Josiah require less and less support.  Today, we witnessed something new.  Josiah sat all by himself.  It wasn't for long but it was numerous times.  He even managed to give me a couple of great smirks as if to say, "Do you see me, Mom?  I'm sitting!  Pretty cool, huh?"

It's funny how proud two parents can be of a little boy sitting.  There he was, sitting.  There we were, just as proud as punch!!!

God, I love this little boy!!!

"Even miracles take a little time"

- unknown author

31 for 21 Blog Challenge: DAY THREE: When Will He Walk?

Josiah will be celebrating his first birthday this month.  The first birthday is always a fun one.  With our other two boys, we reminisced over the many milestones each had accomplished over the first year. 

Jesse had stopped nursing at 10 days and was primarily bottle fed.  I had returned to work when he was three months old.  He had started sprouting teeth at 3 months, was sitting at 6 months, and walking at 11 months.  At his first year check up: he weighed 22 lbs, was 31 inches in height, and had all the teeth of a 2 year old.

James had stopped nursing (via self-weaning) at 10 months.  I never returned to work.  He cut his first tooth at 5 months, was sitting at 7 months, and was walking at 11 months.  At his first year check up: he weighed 19 lbs, was 29 inches tall, and had all the teeth of a 1 year old.

Josiah is 11 months old.  He had his first hospitalization at 2 months.  He became a heart hero at 3 months (surviving open heart surgery).  He cut his first tooth at 8 months.  He has mastered head control.  The skills to master sitting are progressing by leaps and bounds.  He rolls around but cannot yet crawl.  He just reached 17 lbs and is approximately 28 inches tall.  He has a total of 4 teeth. 

Carl and I don't see Josiah as being 'delayed.'  We know he has yet to reach the developmental milestones of his peers.  We also see beyond what he has yet to accomplish.  Josiah is an amazing little boy.  He is the most social, engaging, little guy.  He loves to smile, laugh, and be included.  He loves attention.  He loves being a part of the family.

This morning, I remarked that he would be celebrating his first birthday soon.  I also remarked that his big brothers were walking by 11 months.  That thought made me a little sad - a feeling I don't usually have when it comes to Josiah.  I know he will be able to accomplish anything and everything.  Sometimes, I just need to remind myself that it might take him a little longer.

Recently, we had the boys on an outing.  Two women kept remarking about how cute Josiah was (the older boys were playing nearby).  The thought went through my mind, "Can they tell that he has Down Syndrome? or Do they just think that he's cute?"  Either way is fine.  I guess I'm trying to prepare for the day (and there will be one) when the topic is raised.

Like we've said from the beginning, Josiah is not a regret but a gift.  We don't pity him or our family.  We are humbled by the joy our boys bring to us on a daily basis.  I know someday, Josiah will be judged by someone.  Perhaps we'll be judged (again) for keeping him.  Perhaps he'll be made fun of.  I don't look forward to those moments but hope I can use them to teach others about the blessing that is Josiah.

Yes, I have the moments where I ask myself "When will he walk?"  "When will he...."  In the end, it doesn't matter.  He'll do all those things.  Our older boys will meet all of their next milestones.  They are only young once.  We will enjoy every minute of this time.  Once they meet a milestone, we can never go back.

"Slow down and enjoy life.  It's not only the scenery you miss by going too fast -

you also miss the sense of where you are going and why"

- Eddie Cantor

31 for 21 Blog Challenge: DAY TWO: Brushfield Spots

Brushfield Spots - Have you heard of them?  I hadn't either.  Brushfield spots were first described in 1924, by Thomas Brushfield.  They refer to the little white or yellow spots on the anterior surface of the iris.  They can be arranged in a circle concentric with the pupil, mid periphery, or along the collarette.  They are caused by an aggregation of connective tissue.  Brushfield spots occur in 85% of blue or hazel eyed individuals with Down Syndrome (DS).  Only 17% of brown eyed individuals with DS have Brushfield spots as they are obscured by the anterior concentration of pigment cells.

Here are two pictures illustrating Brushfield spots:

It is important to differentiate these from "Kunkmann Wolffian Bodies" which are present in most children and in 15% of normal, light colored iris.  Kunkmann Wolffian bodies are less distinct, less numerous, and more peripheral than Brushfield spots.

Brushfield spots are a common characteristic of Trisomy 21.  Other ophthalmologic manifestations of Down Syndrome include:

• Refractive errors (near/far sightedness) and squinting - 50% of individuals with DS wear glasses.
• Reduced accomodation (do not focus accurately on targets)
• Cataracs and glaucoma - can occur in infancy
• Astigmatism
• Presbyopia (literally 'old eye') - may occur at a younger age in a person with DS
• Nystagmus - occurs in approximately 15% of people with DS
• Keratoconus - very rare but studies suggest that people with DS are at an increased risk.

Josiah has the Brushfield Spots described above.  I think it gives his eyes a unique and special sparkle.  I wouldn't trade his eyes for the world.  They are beautiful.

"The eyes indicate the antiquity of the soul"

- Ralph Waldo Emerson

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