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, 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!