About Me

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After being told I would never be able to have children, I am now a stay-at-home Mommy to Maddie who happens to have Down Syndrome. I've been married 16 years to my best friend, having the time of my life. Thanks for stopping by and sharing in our little journey through life.

Wednesday, November 28, 2012

Time to Deck the Halls!

We are slowly getting our Christmas things together.  
We made a family night out of it with Christmas music, and according to Maddie when there's music, there's dancing!

Our sad, little tree needs a lots of TLC each year. 
I think I will have to take off all of the lights this year and start over.  
Every year I say I'm going to get a pre-lit tree, but it never happens!!  : )  

After fussing with the tree a while, we enjoyed hot chocolate together!

Do you guys have your Christmas decorations out yet? 
What traditions do you celebrate each year? 

Monday, November 19, 2012

Endo - Friend or Foe?

I've had a long, unwanted relationship with endometriosis.  
I was first prescribed birth control in the 5th grade at the tender age of 11
(which I never took...partly because I was too irresponsible to remember and mostly because it grossed me out!)
My first surgery was at 16 years old.  
Sweet relief!!

My second surgery was at 20 years old.  
Disastrous...developed staph infection and almost died!!
My third surgery was one week later to scrape out all of the infection that had set in.

My fourth surgery was at 24 years old to take care of scar tissue. 
 This was the surgery we discovered babies would not be welcome in my uterus.   
We also discovered no sign of endometriosis!!
Win for me!!

10 years later at 34, it's back with a vengeance.

I know so many of you know exactly what I'm talking about.  
I meet a lot of friends battling their own fights with Endo.

I think the next step for me would be a hysterectomy of which the average age in my family occurs at the ripe old age of 32!!
Not ready for that yet.

The chances of having another little one are pretty slim.
Even if I did get pregnant there's that 15-20% chance the baby would have Trisomy 13 and wouldn't survive.  

I think I would rather take my chances than let Endo win this fight.  

Besides, there's a lot we can learn about ourselves when we accept the pain.
The oyster creates the pearl through pain caused by specs of sand.
Some life lessons are only learned through pain and who knows what pearls of wisdom may lie ahead.  

Wednesday, November 14, 2012

Change is Coming

I'm lucky I got this shot.
The very next day the wind blew so hard every.single.leaf...GONE!
Just like that. (imagine me snapping my fingers with a slight pause for dramatic effect)

Everything changes.
Sometimes things change quickly and the thought makes me shudder. 
Sometimes God graciously gives us glimpses of what lies ahead to help us prepare.  

Like even though we didn't know Maddie would have Down Syndrome when she was born, we knew at 20 weeks gestation things may be "abnormal." 
(if you are new to the blog, you can read about her birth story here)

I've had a series of conversations lately that may very well be foreshadowing changes to come. 
Maddie is thriving in her developmentally delayed classroom at the public school.  
To say I was a little hesitant to put her in public schools is a big understatement. 
I was really scared.  
But we had no choice.
So, reluctantly, I enrolled her.
It's been the best decision of the year!
One of the reasons every parent with a special needs child fears public school is the issue of bullying.
My first conversation occurred with a mom who has twin girls with developmental delays.
They are older than Maddie but still in school.  
She very wisely told me, "Bullying is inevitable. But it's not about the bully or the victim.  It's really about the friends surrounding the victim that create a buffer.  Surround Maddie with good friends and she'll be fine."


I had never, ever thought of that.  
Her words kept mulling around in my brain as I continued to think about it.  

Then, a friend sent this article she read and thought of me. (thanks Carol!)
It completely reiterated the exact same idea!  

My third conversation happened while volunteering at Hope Pregnancy Center. I happened to run into another volunteer,  a Grandma of an 18-year-old girl with Down Syndrome.  
We had a moment to visit and she shared with a weary heart how the gap between typical developing children and children with Down Syndrome widens the older they get.

I had never really thought of that either.  
Right now, we know Maddie is behind, but she fits in just fine and it feels like her and her peers are more alike than different.
I wanted to live with the hope that Maddie would never be bullied and life would never be hard, but that kind of thinking does nothing to help Maddie.  
At some point we have to accept the realities that there will always be insensitive, ignorant people that will pick on the vulnerable. 
We also have to accept at some point Maddie and her friends are going to notice the differences between them.

So even though it may not be easy and we may see hard times ahead, I feel comforted knowing God will equip us with everything we need to endure.

As a takeaway from my life lessons, I would encourage you if you are hesitant or worried about what the future may hold, open your heart to God and trust that he will equip us with everything we need. : ) 


Thursday, November 8, 2012

Delivery Day!

I've been busy collecting coats for a very special group of kiddos from a low-income Head Start center who needed them.
Today was delivery day!  
This project actually started last year.

Although we had a pretty mild winter there were a few days it was below freezing.  
On one of these particular days, I just had a passing thought of how awful it would be if a child showed up to school without a coat that day.  
And then the thought kept swirling around in my head.
And then when I really thought about it, it made me so sad.  
I just kept thinking about it until finally I knew I had to do something.  
So, I prayed.

Maddie helped "organize" the gloves last night while I prepared the gift bags.
God brought to mind this particular Head Start.
I called the director and asked if there were any children who came to school without a coat that day.  
She said she would check.
She called me back and sure enough, there were 4 kids without coats.  
Maddie and I bought coats, hats, and gloves and made sure those 4 kiddos went home with a coat that same day!
It was such an amazing experience, I wanted to do it again this year and get more people involved.
I called up my new director friend and asked for a a list of kids who needed coats.
She gave me a few names, and I told her we could do more.  
She gave me a few more names and I told her I really thought we could do more!
Although I'm not the best organizer, one of the best parts was sharing the experience with my church family.  
So many people were so eager to help, it was touching.  
Me and Kathy!

Here's the thing about God.  
If you would have asked me if I felt qualified to "organize a coat drive" I would have scoffed and said, "no, not me!" 
But it was this subtle, quiet whisper that stirred my heart to the point of desperation.  By the end of that cold, winter day there was NO WAY those kids were going home without coats.  
Whatever it took.  
It wasn't ME doing the work, really.  
It was God's Spirit in me.  
What small whisper's been tugging at your heart lately?    
Do yourself a big favor and listen to it.
Embrace it, and let it take over.  
You'll be so grateful you did.  

Wednesday, November 7, 2012

One Little Secret to Potty Training a Child with Special Needs

I had an epiphany yesterday.
I've always believed that Maddie and can do anything any other child can do...she'll just accomplish it in her own time and in her own way.
Picture taken at Uncle Doug's wedding

It just occurred to me yesterday that the same principle applies to potty training as well.  
I realized there are 10 steps that must be followed for a successful person to put get his/her pee pee in the potty.

1) Feel the sensation that you need to go potty
2) Find the potty
3) Pull down pants
4) Pull down pull-ups
5) Sit on potty
6) Set your potty free
7) Wipe your bottom
8) Flush the potty (wave bye-bye completely optional)
9) Pull up pants and pull-up (can be done together with some skill)
10) Wash your hands

Envisioning Maddie doing all of these things felt overwhelming...because it was!

With any other task we have ever set out to do, we have always broken down the overwhelming task and simplified it.  
When teaching her to put on her shirt I had to teach her to:
1)Position your shirt in front of you on the floor
2) put your arms inside the shirt
3) pull the shirt over your head
4) find one arm hole and stick your arm through
5) find the other arm hole and stick your arm through
6) pull your shirt down

We worked on this for a long, long time at first only focusing on steps one and two.  

I don't know why this approach never occurred to me with potty training!  

Our potty training journey began last spring.  
Things had not been going well, and we had basically been taking a break from potty training all together.

Then, Sunday night I discovered she had blood in her poopy diaper.  
I tried really hard to stay calm, but was totally freaking out on the inside!!
My Granny called and suggested we try glycerin suppositories.  
She may have had a slight tear in her lower intestine or rectum.
She also added that it could help with potty training!
Maddie with her Grandpa at Uncle Doug's wedding

What a great idea!
I reignited the potty training quest with new vigor!
The first night we gave her the suppository, she pooped within a couple of minutes and we had the potty ready.
I am happy to report that there was no trace of blood this time!  

We gave her high fives for pooping in the potty and did a little happy dance.  

The next day, I gave her another suppository.  
Nothing happened, but she pottied just a tiny bit in the potty.
Yesterday I gave her another suppository.  
Nothing happened at first, but I noticed something weird in the potty.
When I looked closer, she had "spit" it back out!
My second attempt was more successful and she pooped and pottied in the potty!

We have successfully narrowed down the 10 steps to using the potty to three.
We start with the pull up and pants off, eliminating those steps.
Instead of finding the potty, we bring it to her.
So now, all she had to focus on is:
1) Feel the sensation that you need to go potty
2) Sit on potty
3) Set your potty free

Honestly, I don't even know if we're really accomplishing step one.  
It really helps to have an ipad.
She sat on the potty for ever watching Curious George and playing games. 

Suddenly she stands up and says, 
"Yay!  I potty in the potty"

She was super proud of herself and now I think we are definitely on the right track for the potty train. 
 (pun intended!! ; )   

Saturday, November 3, 2012

Just Wondering Why...


I find it hilarious that we have to tell Maddie it's wrong to poop in the bathtub and lick brick walls. 
How I would love to know what goes on in that little head of hers!!

Thursday, November 1, 2012

Halloween Happiness

Ah, Halloween.
So much fun when you are a little bitty.  
Now that Maddie knows what candy is, she really had a blast trick-or-treating.  

I'll be honest, though.  
Halloween is usually not my favorite holiday.
Kiddos have a way of changing perspectives though : )   
I know there are a lot of folks out there who don't "celebrate" Halloween.  
My personal opinion is, it's what you make it.  
And if it's a fun time to enjoy the community and visit neighbors and get gobs of candy, then it's a great time!

And a great time it was!!!!!
Maddie was Nemo this year...

We got to trick-or-treat with Captain America (AKA Alexis)...

and a Ninja with some mad skills (AKA Elliot)!

Maddie's little tail was the cutest thing ever!
it would swish when she walked!!!  SO CUTE!!

She had a lantern to light the way...

And when she realized she was getting candy, she had to show Daddy!

We only made it a couple of blocks before she got tired!
And when she got tired, she just took a little rest...

Here's a couple of videos that made me smile...

Hope everyone had a happy and safe Halloween!