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!!

Tuesday, October 25, 2011

The Long Overdue Haircut

Molly's hair is thin and fine, just like her mama's. It didn't look the best longer but she was a girl and I wanted her to have long hair. 
However,  she would  threw an all out fit every time I wanted to put it up in a pretty, braid, ponies...ANYTHING!  She hated the tugging and would pull away from me and cry and scream. Every. Single. Time.
And well, Daddy isn't a fan of putting her hair in a simple pretty.  He is untrainable in the department, I guess.  So she would go to daycare and school with nappy looking hair
So I cut it.  On a whim one day.  Called to make an appointment and got right in.
At first, I hated  did not like it very much.  I was so mad at myself for responding to that wild hair. I really need to control those impulses.

It didn't take long to realize how cute it really was.  While on vacation this summer, I added a feather to accessorize that new stylish do which made me like it even more.
Three months later, I am very happy with my decision.  Not to mention Molly and daddy.  Our morning routine has been much more peaceful.

Friday, October 7, 2011

Expectations

Earlier this fall, I had mentioned to Mike that I would like Molly to take up dance. He was not too receptive to it which kind of surprised me because well, I am the one in charge of the activities and honestly wasn't expecting resistance. He might kill me for quoting him but I am sure there are many fathers of DS daughters that feel the same way. 

 He said, "No, she will just be disruptive to the class. She won't just follow directions and that is not fair to the other dancers.  I know that you want her to do what everyone else does but she just isn't ready"

Well, you know me with that stubborn German blood running through me responds, "I am not doing this so she can be like everyone else. I am doing this because she loves music and she can follow directions"

The conversation did not go any further.  Mike knew I would put her in it. And I did.

I had a nice long talk with the teacher and told her that I would like to see her attend 8 classes and if she was indeed disruptive, did not follow directions, and just isn't getting it, I would pull her out at that time but I really wanted to give this a solid effort. The teacher stated, "Oh my goodness, Tracy! She will be fine! I have had several girls with DS in class and they do great and so will Molly!"

Last night was her 3rd class.  She doesn't allow parents in but she let me. For 5 minutes. So I watched in pure amazement and pride.  She did it! She really, really did it! She stood in line, followed directions beautifully, and best of all she was having a blast! This girl is loving this!


When you have a child with DS, "they" warn you to keep your expectations low.  I suppose to prevent disappointment. I think the hubs kinda keeps his guard up but not this mama! Guns out! Molly met my expectations last night and she exceeded her daddy's! She is her mama's girl.  A little German blood running through those tiny little veins, keeping her strong! 

You go girl!   She ROCKED it!!

Wednesday, October 5, 2011

TaeKwonDo and ADHD


I wanted to shift gears for a moment to talk a little about Mr. Gavin.  That is what he goes by in his Tae Kwon Do class.

Gavin is a busy little man.  My mom refers to him as a breathe of fresh air and ball full of energy.  That is an adequate description of him, I must say.

We have had the "ADHD" talk in our home with him over the past few years. We have met with the child phsycologist, pediatricians, and have had the Vanderbilt testing, along with many conversation's  his teachers the past three years. 

The assessment, unfortunately, has been fairly inconsistent. Mainly between Mike and I.  He thinks he is doing OK for himself.  I, on the other hand, thinks he needs a little boost.  Just a little something to help him retain his ability to focus on chores, school, and general day to day operation of things.

His first grade teacher was very adamant about him getting on something. No doubt in her mind! There were many, many meetings with that teacher.

His second grade teacher thought nope. Not a problem.  He felt that Gavin responded well to praising, had strong and well established relationships with peers, and was able to complete his school work in an acceptable range. Again, another inconsistency.

We have "the prescription" in hand.  I obtained this from his pediatrician over the summer after an hour long conversation.  Still not convinced that that is THE answer.

It's not an easily obtainable diagnosis nor is the treatment. 

So, to honor my husbands request, I have decided to hold onto that prescription for now.  I have done some research on diet and have failed miserably implemented some of these things.  Not to the extent that I think would be beneficial but man! To remove process foods from our diet with the busy life we live seems like a really steep hill to climb!

I then stumbled upon an article that a mom had written in regards to Tae Kwon Do and ADHD (after my pediatrician made the recommendation).  Here is some of what she stated (and not all 100% pertaining to Gavin but you get the general idea):

"ADHD is gifted with spontaneity, creativeness and the ability to focus intensely on any task they take an interest in. All kids can be frequently distracted or inattentive and impulsive on occasion, but a child living with ADHD experiences these attributes most of the time. I know that as a parent I have a great deal of influence in helping him perceive these character traits as advantageous, instead of liabilities. The ADHD child doesn't lack focus but tends to apply that focus in inappropriate ways. He has a low tolerance for idleness and gets bored easily.


A martial art like tae kwon do always emphasizes self-confidence, self-esteem and self-control as part of the curriculum.

In our taekwondo classes, children learn the "right action" at the right moment which tempers impulsiveness and turns it into a positive action. Boredom is negligible due to the fast active pace of the class that is full of jumping and spinning, punching and kicking; the hyperactive child can unleash behavior in an appropriate way and be praised for it.

Another aspect of his tae kwon do training is tolerance and respect for everyone no matter what label society might have imposed.

And so, we enrolled Gavin in a local Tae Kwon Do class and he LOVES, LOVES, LOVES it!!!!  He takes it with his cousin every Tuesday and Thursday and looks forward to the next class.

Last week, Gavin got his very first belt, The WHITE belt and I couldn't be more proud! He worked very hard at this! 




So at the end of the day, he is happy.  He has amazing confience, his totally building up his slef esteem and his working hard at control.  Therefore, we are happy parents!

Tuesday, October 4, 2011

Molly's Mob

We celebrated Maggie and Molly's Birthday this year at the
Step Up For Down Syndrome Walk in St Paul.

It has been a tradition in our family to do this since Molly was born. 
(We obviously missed it the year she was born since it is always the last weekend in September)
  It's one of my favorite activities to do and to see all the support.

Me and my two favorite lady friends. 
These two have been there for me from the beginning and no doubt will always be there.

One of my favorite walkers reminded me of something pretty cool.  Each year we donate and or walk for something and this walk is probably one of the only "happy" walks.  So true. 


Nanna, once again, brought treats and the birthday cake (that you see Molly sneaking a taste!) and presents along with and the rest of Molly's Marvelous Mob!

So after the walk, we celebrated Maggie and Molly's Fifth Birthday Party with song, cake and presents, followed by a trip to the zoo.

..And the day wouldn't be complete with a picture of the Hurlbuts! (Seriously, though K--you are my idol.  I wish I would remember more often to take family shots like this)

As I was putting the girls to bed that night, I was asking Molly,
"Did you have a good 'all about Molly' day?"
and Maggie chimes in, "Mom! It was MY day too!"
I said, "Yes, Mag's.  You are correct.  It was a celebration for your birthday but also
to celebrate Molly and Down Syndrome"
She responds,
"Well, I have Down Syndrome too!"

Saturday, October 1, 2011

Day One! Ya gotta read this! Whatta day!


Today marks the beginning of my favorite month.  The month of October celebrates and promotes Down Syndrome awareness.  This is the time, on my blog and facebook, that I will share with the world how amazing Miss Molly is and how she has essentially made ME a better person, mother, friend, and wife.  Really. 

On Facebook, about three weeks ago, there were posts of an orphan, right here in the US with Down Syndrome.  People were pleading to "please find this boy with DS a family of his own". You see, he was placed with a family prior to his arrival.  Shortly after he made is grand entrance, his doctors revealed (what I call) his "secret".  The little man was sporting that extra 21st Chromosome!

With that, the family gave him back.  Just like that.  Fools. Oh, what fools.  If they had only known....

While reading this, I was thinking, "oh geesh! There are 100's of family's that will scoop this little ray of sunshine right up!" I really wasn't worried for the little man.  Just excited for his new family to explore and learn all there is to know and learn about Down Syndrome.

So today, on the first day of October, the first day of Down Syndrome awareness month, I got to meet this little man and oh my! Is he so stinkin' cute and sweet! Yes, that's right.  This sweet little orphan boy, whom I knew would find a family to call his own lives two doors down from me!

...And that is how I celebrated the first day of Down Syndrome Awareness month! It's gonna be a good month!

Saturday, September 24, 2011

The long awaited day!!

Last Monday, Maggie and Molly had their first day of preschool. 
It was a HUGE day for Miss Maggie Jean
She watched her sister get on the bus and go to school for two years. 
She was so itching to go!
She talked about this day for months. Literally!

She picked out the perfect  outfit weeks the night before and was up before the sun.
Molly was like "what's the big deal sis?"


Molly was saying "There's the bus! There's the bus!" Maggie was grinning from ear to ear, squeezing Molly's hand!


Sweet Maggie ran onto the bus.  She didn't even turn around so I could get a picture.

Buckled the ladies in. No tears. No fears.  Just all smiles!

Look at that happy girl! She could hardly contain her excitement!


Molly's para sent home a note that made Mike and I laugh out loud! She writes: 
"I am so happy that I get to work with Molly this year.  I just love her so much; she's the best! She is such a hoot!  Today while we were going potty, she fell on her butt and said, "Owie butt", turned around, lifted her dress and said, "kiss it!"

Gotta. Love. That. Girl!!


Thursday, September 15, 2011

Molly recite's the ABC's...

In Molly fashion....

It was quite a while ago that this video took place; back in March is my best guess.

Mike called out to me that Molly was being funny and reciting her ABC's. I just had to grab the flip camera and to record such a moment but he reminded me that she had already done it twice and was NOT going to cooperate once again. You know, for the THIRD time!

I find this sooooo funny that I just had to share Molly pausing to recite her colors and to tell daddy to "stop, stop"! And yet, still able to verbalize her ABC's...

I LOVE this little girl and all that she has learned....

Monday, September 12, 2011

Gav's First Day of Third Grade

So here is he is!
 Mr Gavin.  Ready for the THIRD grade!
Oh my goodness!

We started school a week later this year due to construction.
It was a perfect day; 86 degrees and sunny.
Gavin got THE BEST teacher EVER this year, Mr R!

Just look at that smile! He couldn't wait to get those new shoes on and head to the bus stop!

The tradition continues with pic's of the kids...
 Gav with the ladies...All with bright shiny shoes! Love it!

 With his BFF's Henry and Jayden

Koop's and Gav; Best Cousins!

...And he's off!

It's gonna be a GREAT year! I can just feel it!

(Austin snuck out while I was at the bus stop so I missed his first day of school pic! I think it was intentional. Not so cool to have a Juniors pic taken)

Thursday, January 6, 2011

Trusting others with your DS child

Living life with a child with Down Syndrome is really truly amazing. Really. Is is. Our Miss Molly is really one sweet little lady.

But she does require more work. Not all DS kids are. But Molly is. She is 4 years old and requires a lot of attention. For the most part, we start each day with "letting her out of her room" by taking down the baby gate that is at her door. In the beginning, it was so she wouldn't fall down the 17 stairs we have. Now it's so she doesn't wander outside (well, the doors ARE locked) or wonder through the house and get into something while we are sleeping and harm herself. Then we progress through the day, letting Maggie and Gavin do what they want, go to the neighbors to play, play outside with the kids and even venture to the park.

But not Molly. We keep a watchful eye on her. For the most part, it is for her own safety but also it's to not burden others. But really, I think it comes down to a trust factor. Letting go. It's something that Mike and I have not yet learned. How do I know this?

Our dreams.

While taking a nap for a night shift, I had, what I considered at the time, a horrible dream. I could not sleep. It kept waking me up. I was dreaming that Molly was sent to the "neighbors" of a family member and I totally freaked out! I didn't know those people (even though the family member thought the world of this older lady that had lots of toys and made cookies and did arts and crafts with her). I was so upset that this family member sent her to this persons house! I was truly terrified. Even though she probably was a fine lady, I didn't trust her.

Without even mentioning this to Mike, he tells me that he couldn't sleep the next night because he was dreaming about Molly being in an assisted living facility and she was playing a board game with another adult with DS and was totally upset that the staff allowed her to "be on her own". He was so upset (in the dream) that no one was "supervising" her and making sure she was safe. He wanted to take her home! Even though he knew that she was safe, he didn't trust the facility.

Interesting that we both dreamed about allowing others to care for Molly and our subconscious minds would NOT allow this to occur or rather upset us so much?

I wonder if it is telling us it's time to let go and trust others to care for Molly? Or is it that we just worry so much more about our child with Down Syndrome?

Tuesday, January 4, 2011

Gav's Alian Invasion!

In art class Gavin was taught how to make little people out of a simple piece of foil. This is what he brought home.... Once he was home, he took out the foil from our pantry and began to make several of these little alien like creatures. You know how kids are. Once they get their minds set on something, it's totally guns out! They multiplied before my eyes. He played with them for a couple of hours and then went outside to play with his bestie.

I went up to his room to find that these little creatures were all over his closet! I couldn't stop laughing!

On the trim over the door...

The corners of the closet...


Set up on little stands throughout the closet....

I got such a kick out of my 7 year olds imagination!
I tucked him in that night telling him how excited I was that he used his imagination to the fullest!
When I went to check on him before I went to bed, I found this sign on the closet door:
And this is what I found when I opened up the closet door...
All the little creatures tucked into their little cages. Love this kid!

Monday, January 3, 2011

It's a New Year!


2010 was quite the year! You wouldn't know it by my poor, neglected blog. I missed out on so much by not blogging about the kids' birthday, their funny moments, our family trip. I must get better! This is the year. I think that the month of January will have to be a month of catch up. It will be a recap of 2010. It must!

Stay tuned....