Tuesday, February 28, 2012


Today I am grateful for all I have...

That I have a home & beautiful land
That the robins are out today
That today was PJ day for Aubrie's school so we had one less thing to do before school
That my kids are so smart & love to learn & fight over who gets to learn with computer games
That Ollie gets in home therapy 2-4 times a week depending on the week
That I am surrounded by positive, loving people
That my sister lives in my basement & my other sister lives 5 minutes away
That my parents live down the road & Jade's do too
That our parents are so involved with our children
That Dad raises beef cattle
that my cell phone takes pictures because I always forget my camera - sorry the pics are always blurry here!
That I took control of my health
That anytime I want to laugh I have good friends to help me out
That Jade & I have time together when the kids go to bed
That we get upset if one of us watches "our" shows without the other because we like that time so much
That I'm kicking Jade's butt in Word Wars!
That we were able to visit Disney with our kids
That Ollie's heart has ZERO holes!!!!!!
That Aubrie can wear glasses that help her see
That Everett has teachers that love him for through all his wild-ness
That my community is awesome
for a recent Moms night out with friends
my church - every piece of it
That spring is around the corner
that I was invited to go to Atlantis in the Bahamas with a friend and Jade's letting me go
that I was able to nurse Ollie for a year when I was told she wouldn't nurse - suck that naysayer nurse
that I was able to wean her without much of a fight from her
that I have art projects from Aubrie, Everett, Caroline, and Ollie on the fridge
that Cline Daniel is starting to like me better - especially in the mornings - she's not a morning person
Penelope Jane thinks I'm funny and I think she's funny too!
That I like jeggings now
That I get to stay home every day & I can wear my pjs or get dressed & it doesn't matter
that the in home therapists don't look at me weird when I do have clothes & make up on
that Jade doesn't care that I rarely fix up now
That I have a Mom that is a best friend & a Dad that is full of wisdom, and jokes
That I can see Maggie's house popping up in the woods next door - talk about dream neighbors right
That I have a handsome husband that works so hard for everything we have, men like him are truly rare
that I have a blog that people read and enjoy - I have went from decorating, to family, to Down Syndrome, to serious issues on my heart & you all read and support me - love to you all - I'm thankful for you too!

Tuesday, February 21, 2012

Eradicating Down Syndrome...

How would you feel if babies with brown eyes were an issue.  If brown eyes meant those babies had more health issues.  If brown eyes meant those babies could possibly cost more government dollars because their medical issues.  How would you feel if the government mandated that there be a blood test on expectant mothers to see if their babies had brown eyes.  What if the abortion rate was 90% for babies with brown eyes & a vast majority of doctors lacked up to date knowledge or had outdated pre-conceived notions of what it meant to raise a baby with brown eyes.  What if you had one of those doctors that gave you old information & pushed termination?  How would you feel?

Seriously how would it make you feel?

It seems outrageous & like a yeah right made up conversation.  Do you think that wouldn't happen and that I made up some type of what if situation?  But - this IS happening.  This IS real life, but in the world of Down Syndrome.  They are going to government mandate the new blood test for Down Syndrome - why because the new test gives an absolute yes/no answer early in the pregnancy & quite frankly it is a test that they can test for.  The abortion rate is already 90% - where will it be soon?  Some countries are pushing for Down Syndrome to be eliminated by the year 2030 - think that over long and hard - can Down Syndrome be eliminated?  The answer is no, it can be aborted 100% of the time, but it can not be eliminated from happening.

They are calling this test & this mandate a preventative measure.  However, Down Syndrome CAN NOT be prevented.  Mammograms can provide early detection & prevention of breast cancer deaths, yet they are NOT included in this mandate - I find this offensive - do you?

THIS is no different then Hitler.  THIS is eugenics.

Don't get me wrong - Jade & I did an AFP test because we wanted to be informed & we had great doctors...but not everyone does.  We knew what Down syndrome was - not everyone does.  Where is the mandate for up to date information & counseling?

Seriously people - what is next?  Down Syndrome is easy picking because who advocates for them but their parents!  Put it into perspective - what if they start mandate testing for diabetes, breast cancer, autism.  What if Down Syndrome is eradicated?  It's not right!  And if I sound passionate about it, by golly I am - I'm rather pissed today about this topic - it's outrageous what the government can mandate! 

So I ask you to educate yourself here - know what is going on - be the change & share, share, share!

Thursday, February 16, 2012

Are you waiting?

I kept putting myself on the back burner.  Everyone in my life was before me.  I am the Mom & a wife.  I have 3 kids to feed, bath, play with, teach, therapy, laundry, dishes, cleaning, cooking, errands, bills....the list goes on and on.

Then I realized...I will always be busy.  If I don't make time for myself now...will I ever?

So I took a leap & made a change.  

If you want more information please contact me on facebook


Wednesday, February 15, 2012

St. Louis Update

Well our prayers were heard & we had an awesome day!

Ollie is growing & developing very well!  They were pleased with how verbal she is & loved her flirty personality!!  

As far as her cardio appointment, I cried happy tears!  In August we knew she still had a small hole (VSD) in her ventricle by her patch.  It wasn't much of a concern but it was there.  Yesterday it was gone!  The hole has grown shut - praise the good lord!  Her valves have mild leakage & he said it is unlikely she will need a future surgery, however he can never say never - but I sure as heck love the word unlikely!  We don't revist him until another year ticks by!

Her ENT appointment went as we expected.  She does have fluid in her ears & ear tubes will be placed March 8th.  We are happy about that and hope it cuts down on the colds & ER trips she has in the future.  

The rough moments in the day were the blood draw & the ear check.  I hate stuff like that for her.  During the ear check they swaddled her and held her down & cleaned the wax out of her ears then examined them - they are just so small there is no other way.  She has now created a new defense mechanism similar to an octopus.  In a fit of rage I heard her belly rumbling & she crapped 'em clear out of her diaper & all over their table.  That's right - she showed them who was boss!

Monday, February 13, 2012

Heart-full Prayers

We are going back to St. Louis on Valentine’s day for a full day of appointments.

June 2011

July 2011

Endocrinology, Cardiology, Down Syndrome Clinic, Hearing Test, ENT appointment – can you say Snickers in my bag for when Jade becomes a diva – umm yeah – one will be packed!

January 2012 – that scar is so faint now!

Please lift up Ollie Faith’s name especially regarding her cardiology appointment.  Her last checkup was in August & at that point she had a small VSD leak by her patch.  We are hoping that is resolved & that her corrected valves look fabulous too!  We are also hoping to talk her ENT into tubes.  She’s been sick a lot this winter – multiple ER trips for croup.  We think tubes would help because when Aubrie was sick a lot they certainly helped her.

Thanks friends as always!  Oh and a special thanks to Grandma Janie & Grandma Ruru for hitting up Everett & Aubrie's Valentine's Day parties in my absence!

Saturday, February 11, 2012

Ollie Faith Wants To Have A Good Time!

Last night we had the big shin dig!


We had a small family party at our house & Ollie Faith brought the fun!


We had party hats & smiles, well most of the time!


We all can’t believe a year has gone by!


The bigs were wound up in a big way!  Presents and cake…


oh my!


Because we have a deep love of Minnie that was the theme & the cake was amazing, and Ollie Faith sized!


She had no problem digging right in


She ate & ate & ate cake


with pink fingers and a sugar high she got a little crazy


and decided she also needed the forearm to shovel it in!


and yes today – I had a big fat stinky pink diaper to boot!

So one last happy birthday my sweet!  We adore you!

Help me please..

OK so last night I got an email after Ollie's party that Ollie's pictures have been taken from my blog and are being used on a website called Orkut.

From what I can tell and the little I learned on google it's a social networking site mainly in India & Brazil and a lot like Facebook.  They have used Ollie's pictures as their profile pictures.

I'm not sure that it's to be mean, but maybe a weird fascination with Down Syndrome or that let's face it's she is a very cute kid.  None the less - I need as many people to report it as possible to get it down.  Please help me.  And yes you must create an account before you can see these websites.

Yes, if I could find them I would beat the tar out of them, but alas I can't.

And I thought a lot about this last night.  Jade wanted me to shut down my blog because this is where they found my photos.  I just don't feel I can and here is why.

I truly believe the devil doesn't like the joy that kids like Ollie Faith bring to this world.

My blog advocates & educates people about Down Syndrome.  I'm trying to rid the world of ignorance when it comes to raising a child with a disability.  I'm trying to save lives, perhaps some Mom considering abortion will see my blog & choose life for her child - whether she keeps the baby or chooses adoption - it's still life.  I'm making a big impact on a lot of people & that gets the devil fighting mad.  He hates the fact that she has given people faith and hope.  He hates that perhaps someone found God because of her life.  He probably hates her.

But you know what, the devil can suck it.  Because I'm not stopping for him.

Friday, February 10, 2012

A year of awesome...

A year ago today we were anxious, scared, excited, worried...basically full of every single emotion you have when you go to deliver a baby, but dialed up about 100 times.  We didn't know for sure if Ollie Faith had Down Syndrome & we didn't know for sure how bad her heart truly was & what kind of hospital stay was ahead of us.  And trust me we tried to pray all of the above away - we asked for a big miracle.  We received an even bigger one.

She was born February 10th at 8:23 PM weighing in at 7 pounds 10.8 ounces and 20 inches long.  She was much larger than her anticipated size of 5 1/2 pounds.  Further proof that multiple ultrasounds are never 100% accurate.

We took her home on Valentine's day.  She had a longer hospital stay because of jaundice, but we finally brought her home waiting for heart failure to kick in.  She did have the bonus chromosome & her heart defect was certainly present - the ultrasounds did have those parts right.

She was perfect & even more perfect was our family together again & Aubrie and Everett loving on their baby sister.

In March she was in full blown heart failure, but oh her personality certainly out shined any medical issues she had.

In April we celebrated Easter & the love that Jesus has for us.  Church was always our safe haven when the nerves took over facing open heart surgery.  Oh how we love our church and thank God daily for putting it in our lives.

In May we snuggled a lot & prepared for open heart surgery.  I cried a lot too.

We passed out 3,000 prayer cards - they were all over the nation, in various countries too, & spread like wildfire through our community.  Everyone loved on Ollie Faith & us.  The prayers were overwhelming & gave us strength during some very tough days filled with worry.

I took lots of pictures of that sweet scarless chest before.

June 9th she had open heart surgery.  Words can't describe the feelings we had that day or leading up to it.  It was hard, but it was worth it.  She was worth it.

Holding her for the first time on day 3 was just as good as the day she was born, probably even better.

After we went home on day 5, life has been wonderful.  

We celebrate every milestone in a big way.

We slow down and savor the kisses, hugs, and smiles.

We soak up our little girl also known as Tiny.  She is a ray of sunshine in our home.

We used to fear the unknown.  We used to fear Down Syndrome.

Now we know Ollie is a baby, and she just happens to rock an extra chromosome.  We also have gained a new community of friends with families and kiddos just like ours - it's fantastic!

She decided her personality was just too big for 46 chromosomes, so God went all out and gave her a little extra.

and that extra has made all the difference in our lives!

So today we celebrate what has most definitely been one of the craziest roller coasters of our lives.  We had our hands up on the way down screaming all the way, and when we pulled into the station, we had big smiles on our face & proclaimed that was one awesome ride.

We have now walked the walk..  And we can most definitely say our life has been blessed in the biggest ways.  Thank you God for this little girl!  She is going to change everyone she meets for the better & she started with our family of 5 first.

And thank you friends - thank you for the cards, love, support, and most of all prayers.  We couldn't have went through this journey without you & you truly mean the world to our family!!  Thank you time and time again!!

Stay tuned - birthday party post will be up in a few days - tonight we are living high on life like hogs on cabbage!  There is birthday cake being served tonight!!

Wednesday, February 8, 2012

Bravo Mama, Bravo

Last year I stumbled upon a blog.  

On that blog I found two of the most amazing kiddos I have ever seen.  They both had open heart surgery & as I read through all their stories I realized, oh my goodness - the little boy had open heart surgery in St. Louis!!

I e-mailed their mama thinking I probably wouldn't get a response, boy was I wrong.  She was amazing.  She answered questions, calmed my fears, and gave me very useful information I hadn't even considered.  

Her name is Courtney & I'm telling you her blog is full of wit, sass, and laughs.  It also has a lot of wonderful information & activities.  I love it.  It's one of my favorites.  And those squibs of hers are by far two of the cutest little things I have ever had the pleasure to squeeze on - yes I got to meet them in St. Louis & LOVED it!

Anyway, Jade & I have talked about inclusion in the past for Ollie.  He didn't understand it.  We always grew up with kiddos like Ollie put in a special needs classroom.  They were not integrated into our classes other than PE.  It's a different mindset to push inclusion.  I am kind of for it because after school, Ollie will be living & socializing around her peers.  It's important to have good social skills.

When I read Courtney's blog yesterday the whole time I wanted to cheer because she is so right.  I don't merely want inclusion.  I want integration.  No matter where Ollie ends up, as long as she is an integral part of her classroom & truly important to her peers.  I will be happy.

So today, I will be looking for ways to make Aubrie & Everett more integrated in our home because this doesn't just apply to Ollie, it applies to all kiddos.  Click here to read her amazingness especially if you ever deal with kids!

Thursday, February 2, 2012

Are you sitting down??

because girlfriend is bringing the cute!

and maybe a little weird too!

Teeny tiny goes back to St. Louis on Valentine's day for a full day of appointments.  Please add her to your prayers as we meet her cardiologist & pray that the small leak has healed up post surgery!  We haven't had an echo since August so God had lots of time to move!  Thanks friends - we heart you much!


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