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, January 29, 2014

It's Not About Fixing Her

This is always a hard time of year...pre-enrollment.
The time of year you have to assess what the past year's achievements have been and what she might be accomplishing in the next 6-8 months.  

This year is more difficult than past years because I'm seeing the developmental gap widen.  
I think it's inevitable as she gets older that it happens, but I remember a time when I really thought we were tightening up that gap.  

I don't remember where I read this, but a mother with special needs kids wrote,
"It's not about fixing them.  
We have to focus, rather, on what we can do to best equip them with what they need to cope."

In my mind I know it's common sense to know that we will never "cure" Down Syndrome or Sensory Processing Disorder.  
She will always have these diagnoses.
But sometimes, in my heart, I cling to the hope that we can fix her.
We can't, however, fix her.
We can only equip her to cope.

In practical terms, it means we can't fix her teeth grinding.
We can't fix her nonsensical vocalizations.
We can't fix her sleep cycles.
We can't fix the fact she is not ready to be potty trained.
We can't fix her low muscle tone.
We can't fix her inability to communicate reciprocally.
Whatever it is in her brain that causes these "symptoms" will continue to be there.  
The symptoms may change, but the problem remains. 

It's not that these things will not be improved and even conquered through therapy...
that is, after all, the goal.
It's the mindset that I must be careful to control.
If you go into therapy with the mindset of "fixing her" you lose sight of who she is.
She will always have Sensory Processing Disorder, it's part of who she is.
Therapy is just a tool to help her cope.
It's a way of getting around the problem.

Parenting a child with special needs is about creative problem-solving.
What can I give her that will help her cope?
What experiences will best help her succeed?
What does her 'best life' look like and how can we achieve that?

In answering these questions, it's always a tricky balance of pushing the limits and ensuring success.
That's why choosing the best environment for her education is such a daunting task. 

Lately I've been contemplating homeschooling...scary, uncharted territory but then again, so is life with special needs!  


Tuesday, January 28, 2014

Finding Beauty in the Everyday Mundane {4}

"Try it on for size"
This is Ainslee's hat and coat.  Maddie thought she would try it on :) 

Had a great day watching Ainslee...she's growing so fast!

Monday, January 27, 2014

Finding Beauty in the Everyday Mundane {3}

"God's Handiwork"
This is a pure, unedited photo.  
Nature has a way of getting it right.

Tuesday, January 21, 2014

Through the Eyes of a Child

Over Christmas we were able to see Kyle's brother and his family.  
We only get to see them once a year, maybe twice if we are lucky.  

Brielle is a recently-turned 7 year old and Emmelyn is two weeks younger than Maddie yet twice her size :)  
In past years, meeting up with her cousins and has been a bit of a shock to Maddie's system.  
She would often have her hands over her ears declaring, "it's too loud"  :)

This year was very different.  
Maddie was ready and excited to play.  

A day or two into our visit, Brielle pulled her Daddy aside for a serious conversation about Maddie.

Brielle: Daddy, am I like Maddie where some things are harder for me to do?
Brielle's Daddy:  No, Brielle, you and Maddie are a little different.
[With big tears in her eyes] Brielle:  But does that mean I can't love like Maddie because I want to love as much as she does.  
Her Daddy reassured her she can love just like Maddie does even though they may be a little different.
As Ryan was telling us all the story, it occurred to us that no one had ever told Brielle Maddie had Down Syndrome.  
This was her complete, unbiased perspective and observation.
If only we all had a heart like Brielle's!
Matthew 18:3
And he said: "I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven."
I'm pretty sure Jesus was talking about kids like Brielle.  :)  

Tuesday, January 14, 2014

Finding Beauty in the Everyday Mundane {1}

I get why so many people are captivated with photography.
It's a beautiful art form.  

I have found that I have lost touch with the reasons I fell in love with the art.  
Because of that, I'm working on a personal project.  

Document the beauty of the everyday life.  
It's the solution to the tug and pull of the business of photography.  

This one I entitled "Playing with the Shadows"

Order is like a foreign language to this free-spirited sanguine.  
However, I've become a student of order over the last few years and what I used to scoff at, I now admire. 
(sometimes at a distance, but I'm still admiring ;)

While making dinner last night I was suddenly struck by how beautiful these green beans were, all lined up in perfect order.  

These are the moments worth capturing.

Friday, January 3, 2014

Creating Playtime Memories with Toilet Paper

I love Christmas break.
I love that schedules take a backseat and the days are unstructured.  

Maddie's imagination has suddenly come alive and instead of just stacking or lining items up, she actually plays with things now.  

She will often go to the kitchen, closet, or pantry to find playthings.  
On this particular day, she found a perfectly good roll of toilet paper- which became snow.  

We had a lot of fun playing and pretending and it felt liberating to "let go" of the adult instinct to not make a mess.  

I'm convinced that the messier things get, the more creative the brain becomes.  

What's good for the brain is also good for the soul.
Christmas break gives us a chance to reconnect, play, and just enjoy each others company, and I'm a little sad we only have a couple more days left.