A Wonderful Christmas!

This year I was more ready than ever to relax and be surrounded by family for Christmas!

We began our visit with seeing the lights at Crystal Christmas.

Maddie really enjoyed the train ride!

waving bye to Grammie...

Sunday morning, Maddie wore her brand new hat that a certain Santa made for her!! : )  

When Maddie opened her Christmas gifts, she especially liked her Finding Nemo DVD. 

She gave us her best fish face!! : )

And then we enjoyed a white Christmas!!

Hope you guys had a great Christmas
and a
Happy New Year too!!

Loss

Monday morning I found out I was pregnant.

Wednesday morning I found myself in the ER, having had a miscarriage. 


We knew it was always a possibility having both risk factors of an ectopic pregnancy or a trisomy 13 pregnancy. 

I'm still processing the week, and I'm discovering two things that help me deal with loss. 

1) I'm not sure if this is the most healthy thing to do, but it seems to help me. I give myself permission to cry as much as I want but only for a certain time frame.  I cried a lot on Wednesday and felt it was time to move on yesterday. 

Our preacher gave a sermon on loss a few weeks ago. 
We read from the 2 Samual 12 when David loses his son to an illness.
While his son was sick, David wept, fasted, and pleaded with God to save him.
Once his son had died, David washed up, ate, and worshiped God.

2) The other thing that I know has helped more than anything else is to focus on gratitude.

I am so grateful for those two wonderful days of knowing I was pregnant.  I swear I had an extra bounce in my step and I just couldn't stop smiling the entire time. 
These are days I will look back and always treasure and remember.

I am so grateful that this came sooner rather than later. 
I think it was God's gracious mercy on us. 

I am so very grateful to have Maddie. 
She had all of these same odds stacked against her and yet here she is!!

I'm grateful to have yet another perspective on what a miracle life is.

I am so grateful I will one day see our baby in heaven.
A wise, dear friend of mine suggested we name him.
Even though the pregnancy was early, I believe life begins at conception.
We have decided to name him Asa.
It means Healer in Hebrew.
We know he is completely healed and in the arms of Jesus.

OK, so maybe a few more tears and then I'll be done.  : )  

Gracie Has a Tumor

Poor Gracie is at the Vet today getting her tumor removed. 

We will know more once we get lab results back.

They will check to see if it's cancerous, and if it is if they got it all and what type of cancer it is. 

 

Hoping she's OK.   

 

Maddie's First Conversation

I realized last week I've taken communication for granted when Maddie and I had our first real conversation!

We were walking to the park.  

Maddie was in her stroller.

As we turned the corner, and she realized we were going to the park this was our conversation...

Maddie: (squealing with delight) YAY!!  Slide, yay!

Me:  Yeah, the slide?  Is that what you're most excited about?

Maddie:  Kank-ooo (thank-you) momma!!

She's always been able to communication, whether it was non-verbal, using signs/gestures, and a few words here and there.

But this...

was a REAL back-and-forth conversation!!!

It's so exciting : )  

She's accomplishing so much.

I can only imagine what things she will accomplish next year. 

Maddie's Pom Poms

Advent Activities

Amazingly, I had my stuff together this year and we have been doing advent activities with Maddie each day.  

I bought the Truth in the Tinsel e-book this year and it is absolutely perfect for us. 

Each day there is a scripture to read and an ornament to make all of which takes maybe 30 minutes at the most.  

If you don't think you can do an ornament a day, she has the highlights to focus on (love that this mom gets it!)

What I love most about it is the fact that 

1) it's geared for younger children

2) the focus is on Jesus and not Santa Claus

Maddie may not completely understand everything but it's still on her level and I think she's picking up lots of bits and pieces!  

So, first we set up our advent stockings...

I made these a couple of years ago using Martha Stewart's pattern.

Then, each night Maddie pulls out the topic for the night hidden in the stocking.

We read a scripture and then make an ornament. 

Day 1:  Jesus is the Light

Day 2:  Jesus is King

So, this night we read the scripture, but I was too tired to get everything set up for a craft.  That's the great thing about this...you can do as much or as little!!

Day 3:  The Story of Zechariah

haha...this one makes me laugh it's just so darn cute!

Because he was unable to talk until John was born, you use one bubble from the bubble packing sheet for his mouth.  

So Clever!

I don't know who's having more fun...me or Maddie! : )  

The other thing we are doing is reading a book before bedtime.

I've wrapped all of our Christmas books with a number and each night Maddie gets to open the present and we read the book right before bedtime.  

Clean Mama Printables offers the advent tags free on her blog!!

I first read about this on Counting Coconuts blog a couple of years ago.

Despite my best efforts in collecting 25 different Christmas books, I am still a few short.

So, I guess I'll re-wrap some favorites and use them again!!

What We've Been Up To

Christmas-time is so exciting!!  

We started the season off a little rough though.

Maddie got sick over Thanksgiving break and is slowly but surely getting better.   

Friday she went in for her 4 year well check-up (a little late, I know)

She had to endure 3 shots and then the poor thing had to go to the lab to get blood drawn.  

We have to check her thyroid every year, so this was our annual visit.  

She did pretty well with the shots.  

I tried to prepare her ahead of time, so I told her it was going to hurt, but it wouldn't last too long and thinking about it hurting is usually a lot worse than the real thing.  

After the first poke she said, "Hey!" 

And then she squirmed and fought a little through the next two, but she never cried!

That was good, but I was dreading getting the blood drawn.  

It's never pleasant.

We had a long wait in the waiting room, but thanks to the ipad, she and I practiced recognizing letters using this app.  

(yay for free educational apps!)

Then it was time to get it over with.
Two different lab techs looked at both of her arms and then decided on the left one.
They stuck her with the needle and she fought them, moving the needle and missing the vein.
They bandaged her up and we had one more chance with the right arm. 

This time we all held on a little tighter.
They successfully got the needle into the vein and then we had to wait what seemed like forever to get enough blood for the test!!

We got it, and amazingly Maddie NEVER CRIED!!
She's the toughest little thing I've ever seen.
So brave!!

Now that all that is over with and she's feeling better we are ready to enjoy the Christmas season.
I'll share tomorrow a couple of fun advent activities we've began.  : ) 

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? 

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.

ARRRGGGHHH!!!

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.  

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."

Wow!

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. : ) 

 

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.  

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!! ; )   

Just Wondering Why...

Really?

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!!

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!

Happy Halloween!

From our Candy Corn Cutie!!!

The Makings of a Newborn Photoshoot

I love newborn photoshoots!

But let me tell ya...they are in a category all their own.  

The most important skill for a newborn photoshoot is....PATIENCE : )  

It took 5 hours, but once we finally got Baby Eily in that deep, beautiful sleep, I got images like these.

 Pure bliss!