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, October 5, 2017

Knowing When It's Time To Ask For Help

I didn't realize how broken I was until God opened my eyes in his loving-kindness way.  
I began a new study by Ann Voskamp called The Broken Way.

Like most studies that catch me off guard, I didn't really think I had much need for the topic.  
I have discovered, however, I was like Bruce Willis' character in Sixth Sense, totally broken but completely unaware.  

Two years ago God called me to homeschool Maddie.
It's had its challenges, but overall I know it's been a good thing.
The struggle for me has been caring for my special needs daughter 24/7 for the past two years with no reprieve.
I really thought I was handling things OK.
I knew I wasn't knocking it out of the park, but I thought I was holding all the pieces together fairly well.
My first inclination that things weren't quite right with me appeared a few months ago.
My Mommy anger was in high gear and full force, rearing its ugly head and erupting like Mount Vesuvius.
It wasn't the bad day or the anger that concerned me though.
What really gave me pause was the out-of-control feeling.
I had prayed for God to help me.
That usually did the trick.
But not this day.
 I found myself yelling at Maddie when I really didn't even want to yell, but it was like an unmanageable tornado that once unleashed, had to spin itself out of energy.
THAT was my first wake up call.
I used to think that yelling wasn't all that bad, and although unpleasant, a necessary tool for parenting.
I've since been convicted otherwise.
In the moment it feels right and justified and absolutely necessary, but fast forward a few months and on one particular day the carnage of its wake became more important to me than justifying my actions.
I had a real-life, What's Eating Gilbert Grape bathroom moment with Maddie.
She needed a shower, it was a long day, I just wanted to get it done and over with and instead of cooperation, I was met with opposition and defiance and, although I never physically hit her like in the movie, I did force her to take a shower.
There were tears, confusion, and spirits were broken.

And then I knew, at that moment, I was broken.

A broken Mom, passing on her brokenness to an impressionable child.

It's the human experience that happens to all of us at some point and in some form, but what do we do with it?
I knew I needed help.
I happen to have a group of ladies I've been sharing life with every Tuesday morning for the last 8 years.
They are my bible study mentors, my prayer warriors, and I know they will always have me covered in prayer.
As soon as I asked for help, that's exactly what they did.
They gathered around, hands on shoulders, and lifted me up when my spirit was too downcast to do so myself.

Through some sort of supernatural intervention, I have not had to deal with that same level of Mommy anger since then.
Praise God, He transformed me!

I still get upset and express that frustration, but the difference now is that out-of-control feeling is GONE.
And I can tell Maddie that even though Mommy gets mad and upset with her, I will always, ALWAYS love her, even in the mad moments.

And Maddie can now talk about feelings and I think she really does understand on a different level the give and take of relationships.
Once we have resolved our conflicts, she will confirm, "Mommy happy now?"
I smile, nod my head, give her a hug and say, "yes, Mommy is indeed happy now."

 I see that this beautiful soul God has entrusted in my care has the most amazing capacity to forgive, and she gives it out freely and untethered with joy in her heart.

And I think I can feel the broken pieces inside me slowly healing.

Wednesday, June 14, 2017

Two Life-Changing Truths Homeschooling Has Taught Me

I've been reflecting on our homeschool journey lately.
There's always lessons to learn.

We tried public school.
After a year, it became evident to both Kyle and I public school would not be the best fit for Maddie.  

Our next option was private school.  
We enrolled Maddie at Antioch Christian Preschool.  
This was post 2013 tornado and although she had the most amazing teachers any parent could ever hope to dream for their child, unfortunately, there were far too many issues that made the classroom environment too stressful for her.  

I felt God calling me to homeschool during this time.  
Did I listen?

I enrolled Maddie again for another year at ACP with the same teachers.
Even with my degree in Child Development, the thought of being solely responsible for her education scared me to death!
The call was quite clear, however, so I tried bargaining with God.
How about if I enroll her part time in private preschool and teach her at home the other days?

This...was a disaster. 
At the time, I thought I was very clever, but looking back at it with a good dose of honesty, I know better.
I'm barely organized enough with a clear schedule to mange the week, but add in a different schedule every day with lots of distractions and it's a train wreck waiting to happen.

Maddie continued to digress.
We were seeing, on a regular basis, our Speech Therapist, our Occupational Therapist, a Cranial Sacral specialist (to address her extreme teeth-grinding issues), and then we threw in a Child Psychologist for good measure when she began exhibiting signs of PTSD.

Her happy-go-lucky three year old self was long gone, replaced with some sort of inner prison we couldn't seem to break her out of, or reach her.

It was heavy.

The motivation to homeschool suddenly switched from "viable option" to "life-saving, rescue-mission."

Here's the life-changing lesson I've learned about delayed obedience to God.  
God absolutely has the power to redeem all of our bad choices, and He is faithful to do so, 
I wonder if we still have to suffer some consequences.
Not because he wants to punish, but because it's how the spiritual laws of nature work.

 What would have happened if I would have obediently began homeschooling as soon as I knew it was what God was asking of me?
Would Maddie have had to slip away into that strange, unreachable place in her mind?
On the other hand, maybe I'm considering myself too important in this equation!
Perhaps things would have worked out just as they did regardless. (thoughts to ponder...) 💭
Regardless, thank you Lord for mercy and grace! 

It took 2 years to finally walk in obedience, but by this time I was fully committed, all in, and still scared to death!!
I knew for this journey to succeed it had to be a partnership between God and I.
It's so interesting how God always seems to use our uttermost weaknesses to accomplish His best work.

My weakness qualifications:
-sticking to a schedule:  HORRIFYING
-structure:  BORING!
-organization: Do piles of clutter count?
-self-discipline:  SELF-WHAT?
-technique:  NOPE

My strategy to ensure I truly relied on God and not myself or others was to put blinders on to maintain laser focus.
It's funny, the first thing anyone ever asks when they learn we homeschool is, "are you involved in a co-op?"
I knew myself well enough to know, if I got involved in a co-op, I would track down every rabbit trail of every seemingly good idea and end up walking circles, accomplishing nothing.
No, I knew I had to feel my way through the dark to find the right path for us.
And that's exactly what I did.
Seasons of solitude can be a good thing as long as they are only seasons.

Here's the second life-changing truth I have recently learned in this journey.
God has intricately designed us to need each other.
We are never meant to walk alone.
There's a team of us that work to ensure Maddie is getting the best education and opportunities in life.  Myself, Kyle, Maddie's grandparents, aunts, her therapists, tutors, the Down Syndrome organization,  and friends.
We all play our part in putting her needs at the top of the list and figuring out this crazy, complex puzzle of Maddie's education.

After two years of homeschooling, the transformative work of redemption God has done not only in Maddie but in me is astounding!
The best verses that summarize these past two years is Psalm 37:23-24 
23The LORD directs the steps of the godly.
He delights in every detail of their lives.
24Though they stumble, they will never fall,
for the LORD holds them by the hand.

We certainly stumbled, but we never fell.

Maddie now exhibits enough self-confidence to not only audition for a role in an upcoming play this summer, but to bask in it!
She can now attend birthday parties and science museums without any meltdowns from the noise or sensory stimulation!
Her attention span is such that we can sit for 45 minutes at a time reading books together.
(actually, that's about all my voice can handle)
She sleeps soundly through the night!
Every morning she completes a series of chores before starting the day, which include making the bed and feeding/watering the dog!

As for me,
I can sit much more comfortably in a set schedule without too much sabotage!
I actually crave organization! 
I have learned self-discipline is more about grace than grit, 
 it's best if I don't have all the answers, and
the burden of homeschool was never meant to be carried alone.

I thought I was supposed to be the teacher in this homeschooling journey.
I have, in fact, become the pupil. 
Learning more about life, each other, and myself than I ever thought possible.
I would summarize the decision to homeschool with one word:

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

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"


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.