Wednesday, November 16, 2011

Thoughts and Rants!

There is an article that hit the press yesterday.  It'sbeen  all over facebook so if you have a child with Down Syndrome and Facebook, you have seen this article.  For those of you that haven't seen it, let me catch you up to speed.

Here is the article in it's entirty if you chose the long version:
http://www.usatoday.com/news/opinion/forum/story/2011-11-14/blood-test-down-syndrome/51202078/1

It is written by a genetics physician and is very well written. He, himself, has a sister with Down Syndrome.

 He stated the company Sequenom announced that with a simple blood draw at 10 weeks of gestation, a pregnant woman can now learn with near 99% accuracy whether her fetus has Down syndrome.

He goes on to share a survey that he and his colleague conducted and revealed that 99% of parents say they truly love their son or daughter with Down syndrome; 88% of brothers and sisters say they are better people because of their sibling with Down syndrome. People with Down syndrome themselves spoke up, too: 99% are happy with their lives, and 97% like who they are.

The other part of the article that got my attention was that he states, "No longer are people with Down syndrome "poor things," "sweet souls" or "retarded citizens." Instead, they and their families have claimed fulfilling lives, rich with "typical" life experiences"

Now for my two cents on the issue.

I am frustrated, saddened, irritated with this world's (and yes this is a world wide problem) obsession with the "perfect" child.  For arguments sake, Molly is actually more perfect that I will ever be!

Let me point out the obvious.  Individuals with Down Syndrome are not a menace to society.  They are not non-verbal, low functioning, sickly little beings.  Yes, they do struggle with speech, walking, and have a list of health issues but so do so many other kids without 47 chromosomes! 

I have said it 1000 times; Molly has enriched our lives and the lives of all that are blessed enough to know her. We have learned to enjoy the small things, slow down, and enjoy!

 It has been brought to my attention more times than I even care to mention that when an ultrasound reveals a problem and the child may have Down Syndrome, they are very quick to remind them that the pregnancy can be terminated. 
 
 As the educator at work says, "Knowledge is power...Only if you share it!"  So why don't these OB's refer these parents to me, to someone who has a child with Down Syndrome to educate them on what it means to have a child with Down Syndrome. This is in addition to what the article states of giving booklet, Understanding a Down Syndrome Diagnosis, with fair and balanced information for expectant couples. I am not sure that my community does this but I am destined to find out.

When will the world realize that it is not a freaking death sentence to have a child with a disability?  When a child with Down Syndrome is born, I literally cringe when I hear someone say, "oh...that is so sad" or "oh...that is too bad".  They have no idea what you are saying.  I realize that it is just his or her ignorance talking but I do have to count to 10.

OK. I feel better now.  Off my soapbox.

For those new to my blog or just want to re-watch the most wonderful video about having a baby with Down Syndrome. Yes, it's true.  It is the THIRD time I have put this on my blog but I just love it.  So much that deserves repeating...

Monday, November 14, 2011

Maggie's First Play Date

Maggie has a best friend we call Katie Bug.  She is the cutest little ray of sunshine.  Katie Bug and Maggie have been in daycare together for the past three years.  They are also in dance together. 

Katie Bug came to Maggie and Molly's Fifth Birthday Bash (which I still have to blog about as it was a fantastic day!) and it was her first birthday party she had ever attended.  She did good.  Her mom dropped her off and picked her up several hours later. No tears. No worries. She had fun.

It's a big deal when you are only 5.  You know, to leave your mama's side and do something all by yourself.

Katie Bug's mom invited Maggie over last weekend for a play date.  She was originally thinking it could be a sleep over but we both realized that this might be a little much for sweet Mag Pie.

And so, we decided that we would just make it a play date.  Her mom was to pick both of the girls up from daycare around 4pm and drop Maggie off at home around 8pm.

Maggie was so stinkin' nervous.  Cute nervous I must say. 

"Mommy, I am just going over there until bedtime, right?" "You will be there to pick me up, right?"

I worked that night so shortly after I left for work, around 6pm,  I texted her mom to see how it was going.

The response was, "I just dropped her off at home.  She said she had to go home because it was dark outside, therefore, her bedtime and she had to go to bed"

The poor thing was just too nervous to enjoy her time away from her sister, whom steals her toys and wrecks her perfectly designed pictures and her brother whom is always picking on her and whom she is constantly fighting with.

There's no place like home.

Thursday, November 10, 2011

What's in a name?

When I started this blog a few years ago, I struggled with what to name it. I settled for "Four Wonders of Life" because my kids are really truly my greatest joy and wonder.

But the name just doesn't fit. I am a busy woman! I work as nurse, odd hours and weekends. I have a teenager, a school-ager, and two preschoolers. Go ahead and throw in an extra chromosome into the mix for good measure.

Seriously, I live a "crazy life".

So I went to the thesaurus and typed in "crazy life" and came up with my new blog name, "Erratic Bliss"

ERRATIC: "deviating from the usual or proper course in conduct or opinion"; having no certain or definite course; wandering; not fixed"

My daily schedule is ever changing. I always have to be ready for the curve ball. And trust me, it happens daily around here. It usually revolves around Miss Molly. Work allows me to stay home for 8 days in a row and then I end up going to work for 5 out of 7 days. Always an adventure.


BLISS: "perfect happiness; serene joy"

It's no surprise that researching the word "life" produced the word "bliss". I like the word.

Granted, there are days were I need to count to 10, scream, run! The teenager, the chromosomally enhanced child, the school ager that hates to read, the activities, the finances, the job, the hubs!!!! Ugh! How do I acquire the right balance to keep it all straight and narrow?? And well, nothing is perfect. Let's be honest, but for the most part, my life is full of happiness and joy.


So, this is where we are. Enjoying the journey of life with "Erratic Bliss"



Thursday, November 3, 2011

Halloween Fun!!


Halloween is so magical for the kids!
 They love picking out the perfect costume.
This year was especially sweet for mom. 
Gavin raided Uncle Jeremy's army chest for all the attire.
Maggie dressed as the same thing she was last year (couldn't convince her otherwise)
Molly got a special design from mommy's work.
Can't beat a year that didn't cost me a single penny!

 The question I ask myself several times a day, "where's Molly?" came across my lips.
The surgeon had fled the OR.  I found her running down the dirt road behind our house....
...And to Uncle Jeremy's house.

Molly really got into this treat or treating thing this year.  Last year she went to three to four houses and was done.  She didn't have much of an interest.  So, we assumed she would be the same this year.  After the first cul-de-sc, I told Mike to go ahead and take her home (Austin was handing out the candy) but she wasn't having it! About 15-20 houses later and hearing her sweet "trick or treat!....Thank You" I thought we better not press our luck and sent her home.

The neighborhood crew tradition! They all looked great!


Chloe and Taya decided to skip dinner this year and join us! What a treat!

We have a house in our neighborhood that is always, always into the holiday spirit and does a super fantastic job at Halloween.  The kids never forget and love to go...

(This is a real life creepy guy posing for the camera! Creeeeepy!)

The kids loved checking it out.  Some (Chloe and Maggie) of the kids were a little freaked out and had a hard time convincing them that it was all just pretend and had to have a lot of convincing to venture into "The Boneyard"





At bedtime that night, Gavin told me that "it was the best Halloween ever!".
Yup, he tells me that every year. 
 I love it as it shows that he had a blast!!