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.

Thursday, April 13, 2017

Hope Rekindled

Yesterday was a bad day.
Maddie and I have been struggling lately with what seems to be some setbacks with her learning.
 Several potty accidents for days in a row, a near meltdown at speech therapy, and facing the reality that maybe...just maybe...she may not have the ability to learn to read.

Amidst the struggle one night I was talking to Kyle about it and frustrated, I said, 
"It's not her fault, but it's like her brain just isn't working right, and I don't have the right key to unlock it."
Maddie was listening and she pipes up and innocently asks, 
"My brain broken?"


Sweet girl.
Tensions eased and we kind of laughed,
"Well, yeah, in a way your brain is a little broken."

I cannot express how frustrating it is to witness so many glimpses for potential to learn, but find a roadblock that you just can't seem to get passed!
This is a brilliant mind in many ways.
She has memorized the movie Trolls.
If you play the song, she will begin acting out every single move to every lyric with amazing precision!
This mind has discovered ways to compensate for her "broken brain."
When visual stimulation gets to be too much, she's resourceful in finding something that covers half the screen on her iPad.
When the auditory stimulation gets to be too much, she's learned to hum or (more devastatingly) grind her teeth to block out the noise! 
This is a very smart brain, it's just a little broken in areas.

Yesterday afternoon I was studying neurodevelopment and neuroplasticity and wondering if hope could be found.  
I decided maybe it was time that I let go of some of my dreams I have been gripping so tightly for Maddie.
I needed to resolve that if she never learns to read, it would be OK.
Re-organizing expectations would certainly alleviate some of the pain of seeing them unmet. 

But then the most amazing thing happened.  
As we were all winding down the day and getting ready for bed, Kyle asked Maddie if she knew what Easter is all about.  
She proceeded to tell him with amazing articulation that it's all about Jesus.
"He died on cross, but He's Alive!"

I don't exactly know what it was about that conversation, but it was exactly what I needed to rekindle hope.
She exhibited comprehension, organized thought patterns, and recollection...all pre-cursers for learning to read.
I was shocked!

We have so much work ahead of us, but the best things in life are always worth fighting for.

In the words of for King and Country, 
"To everyone who's hit their limit
It's not over yet
It's not over yet
And even when you think your finished
It's not over yet
It's not over yet

Keep on fighting 
Out of the dark
Into the light
It's not over
Hope is rising
Never give in 
Never give up
It's not over 

Until the kingdom comes 
Until the race is won
Don't you ever give up
No no never give up
Until the kingdom comes
Run 'til the race is won
Don't you ever give up
We will never give up"

(this just so happened to be my anthem while training for the marathon!)
And now we are running a different marathon of sorts.

Thursday, March 30, 2017

Living for the Ones We Love

I hope I outlive my daughter.  
That's probably not what most parents hope and dream.
Nothing is typical when you raise a child with special needs, including your hopes and dreams.  

The life expectancy for an individual with Down Syndrome is 60 years old.  
That means I need to live to be 90 to be around for her entire life.  
Kyle and I have a will and know that if something happens to us, we have family that will take great care of her, but for her sake, I want to be there for her every step of the way.
It's my life's mission, and once it complete, then I'll be ready.
She and I, we're in this thing together...for life.


I understand what Paul meant when he wrote, "For to me to live is Christ and to die is gain. If I am to live in the flesh, that means fruitful labor for me.  Yet which I shall choose I cannot tell.  I am hard pressed between the two.  My desire is to depart and be with Christ, for that is far better.  But to remain in the flesh is more necessary on your account." Philippians 1:21-24

I had a near death experience when I was 20 and at the time I didn't realize what I was trading in, I just knew I didn't want to die.  God honored that fight within me and saved me.  But now, almost 20 years later I do have a better idea of what I'm asking and, like Paul, I am torn between the two.
I want Maddie to be able to be independent and live on her own, but in the reality of her situation, she will always need someone looking out for her.

Not only do I need to live in my 90's but I need to be capable of taking care of myself and another person!  I know it's a big dream, but I also know nothing is impossible with God.
Besides, I think this is a God-planted dream in my heart.

So, how in the world do I prepare myself now for a life that's long and healthy? 
I have to make good choices, every day.
I have to take care of myself in every way possible.
I realize there are so many factors of health outside my control, and I give those over to God.
But there are so many things that I do have control over and I have a responsibility to live my best.

The first thing I've decided to address is diet.  
This sugar addiction is REAL!
I'm on Day 17 of a 21 day sugar detox, and I honestly don't know which is harder:
fighting sugar cravings or running a marathon. (seriously!)
Wow! Was I unprepared for this!
Before starting this, I knew it was a good idea to do a sugar detox, but if you asked me if I had a sugar addiction I would have said no.
I was wrong.
The first week was AWFUL.
And it didn't help that I happened to begin March 13th, which meant the 2ND day of my 21 day detox was Pi day and my husband kindly requests pie for pi day.  
I ask him what kind he wanted and he said "just pick whichever one looks really good"
"You're killing me, Smalls!"
Then I had to look at it for the next week as he ate one piece at a time each night.

The neat thing about our bodies is even though I had put myself in a bad place with my health, it didn't take long to see major improvements.
After 10 days the cravings really decreased and I had way more energy, less brain fog, and no more headaches.
I feel SO much better.  
So far I've lost 3 inches off my waist.  
But more importantly, I've lost my afternoon energy slumps and the overall yucky, heavy feeling!

Can I live a productive life into my 90's?
I don't know, but according to this article about super-agers, a lot has to do with your attitude, and a good dose of genetics helps too.
It just so happens, longevity runs in my family.
My Great Grandpa lived to be 103, and my Granny is 95 and still going strong!
Love you Granny!

So for now, I can stay away from sugar and keep a positive attitude
Photo credit: Maddie Schasteen

 and in doing so, I'll be loving my girl the best I know how!




Friday, March 10, 2017

Funny Things Maddie Says

Finally!!
At 8 years old, I finally get to document some of the funny/cute/interesting things Maddie says that reflect who she is.



It's been a long time coming, and I'm loving this new milestone!!!
Maddie has always been able to communicate whether through facial expressions, signs, or body language, but now she's actually sharing her own, personal thoughts and expressions unprompted.

I never realized how intricate the art of conversation was until a few years ago in speech therapy an assessment broke down the various levels of communication.  
At that time, Maddie was far better at receptive language than expressive, meaning she understood more than she could speak.
In fact, her expressive language was mostly non-existent.  
Language is so complex!

It's remarkable how a brain that struggles to process visual, auditory, and oral inputs can make heads or tails of anything in this world, but Maddie is doing it!
She's a warrior, super hero!

And now, we are enjoying all that she has to offer this world.

Here's a few things that have made me smile recently:

A few night's ago she wanted to bring a book to bed.  It was a Mickey Mouse clubhouse book and not the small, pocket version either; a big, hardback, cumbersome book that she wants to sleep with.  
I told her yes, but immediately regretted the decision when the corner of the book gouged me in the arm.
As she prepared to go to sleep I hear in a sweet, tiny voice, 
"a-night Cickey, a-night Minnie, a-night Donald, a-night Goopy, a-night Donald...no...uh...a-night Tuto, a-night Daisy"

Aww.

Another time we were driving on I-40 passing downtown and she says, "Look Mommy it's Max, it's Max!"
It took me a while, but I finally realized she was talking about Max from the movie Secret Life of Pets. The movie is set in a big city and the high rise buildings reminded her of Max. 😊

Sometimes she still gets things a little wrong but it's so cute.

Like when she repeats back her morning chores. 
First thing in the morning she has to go potty and feed and water Belle.
She'll say, "Ok mommy, I go potty, eat Belle, water Belle."
"I did it!"

Or when she's counting to twenty and she says, 
"ten, eleben, two-teen, turteen, fourteen, fiveteen..."

It makes sense!

And sometimes figuring out what's she's saying is still a puzzle.

Like when she's hugging Belle and and she says, 
"Aw, she wubs me." (Translation, "she loves me")

Or "Whoo, I'm surssy!" (Translation, "I'm thirsty")

These kinds of things we have just memorized are her versions of words.
Once you have taken the mental journey to figure the puzzle out, you don't soon forget!!

And of course the other side of Maddie is her Sassy side.
Maybe it does border on disrespect, but I secretly love her sassy side, (most of the time!)

When I tell her to do something she doesn't want to do, but she finally gives in she says, 
"OK, bine, I'll do it!" With brows furrowed, of course!

Sometimes I find myself just gazing at her, in awe.
I'm so proud of how she approaches life, undaunted by her challenges. 
She's learning more and more each day and growing into her own, unique person. 
I now have a new appreciation for what is usually simple things I know I have taken for granted like the ability to speak what's on your mind!



Thursday, February 16, 2017

Valentine's Day 2017

We kept things really simple for Valentine's Day this year.
It was simple but special.

For us, it was just dinner and a movie at home.
We had filet mignon with horseradish cream sauce, cheesy-herbed mashed potatoes, spinach strawberry salad, and chocolate covered strawberries for dessert.

To make things a little special, we had sparkling cider, flowers, and balloons!

Maddie made her Valentine's for Daddy.

She's' been working really hard on writing her "M's"!


She helped clean house before Daddy got home!

And she was in charge of making the chocolate-covered strawberries for dessert!



She had to taste the chocolate for quality control, of course!


Maddie's Valentine's gift was the Trolls movie and she was SO excited! 
We finished up our evening watching the movie in our pajamas!

Hope you guys had a great Valentine's Day too!

Wednesday, February 1, 2017

Unintended Consequences Change Brings On!

Restructuring our homeschool schedule and curriculum has had so many ups and downs!
Each day I'm learning more about myself, Maddie, and the two of us together.
 Maddie has discovered the THING that just gets under my skin and uses it what feels like 75% of the day!!
Whoo, this is not for the faint of heart...the power struggle is real! 😣
I think the overall decision to change to more structure has been extremely beneficial, but at the same time, it's totally cramping her style!
No more hours droning on and on endlessly with electronics!
No more making up a third option when given two choices!
You expect me to put my own shoes on now...by myself?!
Yep, and we call those life skills!





We are working on a consistent schedule with the same things happening in the same order each day.
They don't necessarily happen at the same TIME every day, but I do try and at least make sure they are in the same order.

We begin the day with Maddie's chores.
Right now that is feeding and watering Belle, and going potty.
She was extra generous this particular day! :)


Then she gets a few minutes with her iPad while Mommy has quiet time to read.


Then, we have breakfast.


Our attempt at Mickey pancakes!

After breakfast it's baths and getting ready for the day.


Next, we take Belle on a walk and work on obedience training with her.

Then, we take a few minutes to play with Belle outside.

After all this we head to the homeschool room and begin the curriculum's lessons for the day.
Our visual schedule.  Definitely one of the best changes we have made.  Maddie LOVES it. And when she's in a particularly feisty mood, she wants to be in control of the order of things! That's a battle I can concede as long as we get everything done!



After work in the homeschool room, it's time for snuggles on the couch with books (my favorite part of the day!)

We are generally finished up around noon, give or take an hour.

On Wednesdays and Fridays we go to speech or occupational therapy.


Then, the afternoons are more relaxed with games, outside play, art, etc.





I found myself struggling against the curriculum, My Father's World- Kindergarten.  There's so much I really like about it, but there's enough that I felt the need to adjust down to her level that I found it was causing unnecessary stress.
I ordered the preschool level from the same company and I think that will be the perfect fit for us right now.

We both are experiencing some growing pains, but I know it's all for the best.

Monday, January 30, 2017

Dissapointment

Raising a child with special needs has its disappointments.

A visit to the cardiologist reveals the hole in her heart is still there and could cause strokes later in life.
Disappointment.
A visit to the endocrinologist means more blood needs to be drawn, which causes extreme anxiety and trauma.
Disappointment.
A visit to the eye doctor and you discover her eyes are getting worse and a new set of lenses is needed.
Disappointment.
You're cleaning up your 8-year-old's third potty accident of the day.
Disappointment.
Birthday parties and social gatherings are a struggle because of sensory overload.
Disappointment.
There's the occasional mean kid at the playground who sniffs out vulnerability and takes it out on your kid.
Disappointment.
A new skill is learned only to discover a week later, it's mysteriously vanished.
Disappointment.

Yesterday's sermon was about disappointment.
The point was made when disappointments come in our lives, it's to serve one of the two outcomes for Christ's mission: to glorify God and/or make disciples.
Beth Moore says things happen 1) for God's glory or  2)your destiny.

The question to ask is not why, but rather "how will this glorify God or make disciples."

How does an extra chromosome glorify God?

Call it a Mom's bias, but I can't look at Maddie and NOT see God's glory.
I don't think you can look at the disappointments and not also see the blessings.

Yes, her heart has a hole, but she uses that heart to love passionately.


Sure the trauma of getting a needle stuck in her arm is extremely unpleasant, but she learns that she's strong and capable.

Maybe she is nearsighted and requires stronger lenses, but she sees things in people that I can't see with my 20/20 vision.

Yes, we are 8 and are still struggling with potty training...ok, honestly I'm having a hard time seeing the blessing in this one! (just kidding, at least all of our digestive systems are working properly, right?)

Social gatherings and sensory overload is complicated and difficult, but we are learning what it takes to be kind to our bodies and meet our needs (which in turn teaches us compassion for others).


Bullies happen to be a part of life occasionally, but what an amazing opportunity to extend grace and mercy.

Skills come and go, but although they may go, the next time around they come back a little easier than before.



Maybe I'm wrong but I believe this is a disciple in the making!

Disappointments are hard and they feel gross, but I hope in your disappointments you may see the glory of God and the work it takes to make all of us a little more Christ-like.