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, August 27, 2014

A Monumental Moment

This image probably won't stand out to anyone else but me.  
I knew it was worth capturing the moment I heard the words, "I did it!"

This image represents courage, facing fears, and overcoming real and present obstacles in life.  

And I'm so proud because my baby girl, "did it!"

We had somewhat of a traumatic experience with our second sleep study.  
The technician taking off the "stickers" on Maddie had no mercy!
He ripped them off, I'm sure thinking that was the best method.  

Maddie was wailing.
With 27 wires hooked up and several more "stickers" to rip off, it was torture.  
She looked like she had a rash when it was all said it done.  
Her skin was irritated with bumps and red spots which stuck around for several days.  
It hurt!

So, when we went to the cardiologist Monday morning and the technician announced she was going to put a few "stickers" on for an echocardiogram, Maddie was in full-on panic mode.  
Normally she's a flight responder when it comes to stress but that day, she was going to FIGHT!
While I had to hold her down (the worst feeling in the whole world, btw) the technician somehow managed to get all of the sticker tags on.  

Maddie was NOT going to let her connect any wires though!

She fought hard.
And won!
Looking back she probably saved us several hundred dollars ;)

The Dr. came in and did things the old fashioned way with nothing but a stethoscope and was able to ease all of our concerns about an irregular heartbeat.
She has what's called a sinus arrhythmia, which is very common and considered normal.

Now with were left with all these "stickers" all over her chest.
I tried reassuring her that we could use a wet paper towel and ease them off, or we could use soap and slide them off.
She was having none of it!

So we wore them home.

When her daddy came home, she showed him her chest and said "hurt" and started crying!

I decided we would just attempt to deal with them in the bathtub.
I put "magic bubbles" in to 'get those stickers.'  

She apprehensively got in and I stepped back and gave her some space.
I knew this was something she would have to have control over.

In my mind I was thinking we would have to wear these stickers for weeks waiting the adhesive to give out.

And then I heard her proud, tiny little voice exclaim, "I did it!"
She had taken off the first sticker all by herself.
She faced her fear of pain and conquered it.

All. by. herself!

She took every single one off.
Her skin is still irritated with red little squares marking the spots her "stickers" taunted her.
I'm so proud of her.

I hope she carries this lesson with her always.
And just in case she forgets, I have the documentation to remind her what she's made of!


Sunday, August 10, 2014

Progress with Sensory Processing

We have a live-in house guest in our sandbox outside.  

This little guy has taken up residence and has been there all summer long.  
He usually hops on out as soon as the commotion of the building of the sand castles commences.  

Yesterday, however, he lingered a while.  

Maddie has never noticed our one-eyed guest...
until this day!


When she saw him hop away, she didn't hesitate. 
She had a plan. 
She grabbed and sifter and the chase was on!


Lucky for our frog friend, he narrowly escaped.  


Maddie, however, was clearly disappointed.  
She began calling out to the frog and looking for him. 
And then, finally, resided in the fact he was gone, she sat down for a rest.  

This seems like an every day childhood occurrence but for us, this is BIG, BIG progress!!
For instance, this is the first time Maddie even NOTICED the frog, which indicates an awareness of her surroundings.  
Before this, she would have been so defensive of all the information her brain was trying to receive that she would just shut everything out, therefore not noticing the world around her.
Secondly, she PROCESSED what to do with the frog.  
She thought through the idea of catching him with her strainer (brilliant!) and proceeded to try and make that happen.  
Of course all this happened in a matter of seconds, so for me I had never realized watching normal kids how amazing this is, but Maddie has a processing disorder that has never allowed her to fully process a situation like this...UNTIL NOW!!!
I am so excited and so proud of her.  
We have been using a method of therapy called Bone Conduction Therapy that has really been the turning point for us.  
I'm so grateful for our wonderful Occupational Therapist who didn't give up on Maddie. When the music therapy wasn't getting the job done, she was just learning about bone conduction and decided to give it a try.  
I'm so glad we did!
Even though she's been doing this for over 20 years, she's still pushing herself to learn new techniques and find the best path for the kids she sees.  
Amazing.

New discoveries like our frog friend are now happening every day and life is getting super interesting for her and me!

Monday, August 4, 2014

Purpose in the Pain

For the last three weeks, I've been attending a digital storytelling workshop for survivors of the Moore tornados.  

Here's my story...
video