Monday, March 22, 2010


Have you heard about Morgan's Wonderland?
I recommend rolling your mouse over the map to see what it offers.
Created by a dad...of a daughter with special needs.
Awesome and inspiring.

Sunday, March 21, 2010

Team player...

I am positive that I am not alone in this.

Just a few days ago, Michael and I were having a "discussion".
The topic is of little consequence.
I was sharing my frustrations and he was sharing his.
Tears were shed.
There were many "I just don't understand..." and "it doesn't make sense".
I would say something and he would come back with a defense.
I found myself asking; "Why do you feel like you have to defend this situation? I'm not upset with YOU."
He replied...It feels that way.

This was a situation that both of us felt like we had very little control over.
We had both been "investing" in it.
Neither of us were seeing the "fruit" we had hoped for.

I immediately started thinking...why do I do this?
I remind him all of the time that we are a "team".
We are on the same side.
Yet, when we or our children hit "bumps" or we get scared or's as if we turn on each other. It is ANYTHING but intentional. We would actually deny that we are...unless we look at it from the other's perspective.

While I feel certain that every married couple knows exactly what I'm talking about...if they have a child with special needs...magnify that by one thousand! If the "typical" married couple must invest in their marriage, how much more so do the parents of "exceptional" children?
Now I will say, there is something to be said of laying in the "trenches" together...fighting and advocating for your child's life. However, there is trauma that comes along with has to be dealt with and worked through.

As if we have all gone into war and fought a battle...possibly losing the lives of friends along the way. We absolutely need each other.

My prayer is for grace.
In friendships and in marriage.

Continue to fight the good fight friends and remember...we are all on the same team!

Thursday, March 18, 2010


That's how I feel today.
Messy inside.
If that makes any sense.
I've put words in my book that I'm writing. - good
I'm worried about Grace and what this might be. - bad
I registered my son for high school today. - good and bad
I'm tired. - bad
The sun is shining. - very good

Contemplating so many things in "life" right now.
A time of much thought. not all bad.

Friday, March 12, 2010

One year ago...

When I joined the "heart mom" forces...I was a bit intimidated.
*we are a force to be reckoned with!* ;0)
Really...each one can tell you each and every time ANYTHING "heart" has been done.
I'm NOT great with dates.
I have SO many to hold dear.
The day Grace and Jacob came home.
Their adoption dates.
All 6 birthdays...
OK...I'm just not great at it.

Over the past tummy has hurt off and on.
Like I'm anticipating something...bad.
It would wash over me EVERY TIME...last year at this time:
she was in heart failure
we were preparing to be separated from our other children
we worried if we would lose her
we were preparing for this
OHS 2009

I have been amazed at how this event is cemented in my mind.
I couldn't forget the date if I wanted to.
This is a day I will never forget.
So much emotion

If you are a new heart WILL remember the date of your child's open heart surgery...I promise.

Wednesday, March 10, 2010


"The grass is greener on the other side"

The fall of man.

We all struggle with discontentedness.

In some form...we do.

Whether it is looking at your neighbors house or car.

Feeling like they have the "perfect" marriage or job.

Knowing if you were just their size or had their hair color.

Even the "unselfish" discontentedness.

If only my child could...*fill in the blank*

I wish our church or community would or could x, y, or z.

It can be can wear many masks.

Following my journey to heart became much more content.

Content with my life. *not in my desire to serve Him*

I "need" much less...than I had once thought.

Over the past year...I have battled with that familiar friend again.

How quickly we forget what we know to be true.

It came "masked" in a family passionate about Africa.

They share a child with special needs.

Also chosen to adopt.

I have found myself feeling like their grass has to be greener than mine. a lovely thing.

I went beyond inspired and became...jealous.

I wanted their life.

You know...the life that we get to see, from the outside looking in.

Their marriage...that life...has been fractured by infidelity.

Hearts are broken.

Lives are hanging in the balance.

The foundation has been shaken.

Not one of us is "safe" from it.

I am a painful way.

That not greener.

My heart tells me...don't waste your life admiring their grass...nurture your own.

*discontentedness: a longing for something better than the present situation*

Saturday, March 6, 2010

What do you do when...

you are informed that your second cousin has unexpectedly passed away.

Well, naturally, you attend the funeral...right?

Let me give you more information:
This second cousin is on my biological mother's side.
My bio mom and her cousin would party...hard...together.
I have many vivid memories of time spent with *Richie, my second cousin.
Being awakened in the wee hours of the morning...our moms having the "munchies".
Heading out to a 24 hour restaurant...wondering why we were the only ones there.
Not feeling hungry, but enjoying the adventure.
Richie was about 4 years older than I...he was fun and funny.
I have a handful of memories that include Richie's sister.
She was a bit younger than me.
She had special needs...I remember being mortified that she wore diapers at the age of 10.
When I looked back on those memories as an adult, I thought she had CP.
I felt like she couldn't walk or talk.
I was aware that she wasn't always around because...her home was an institution.
Another strange concept for this little girl to wrap her brain around.

That was my perceived is the actual truth.

*Anne was born with Down Syndrome.
She was born 32 years a time when babies with DS were institutionalized.
She never spoke intelligibly, never toilet trained, and lived her entire life in a State Hospital.
Developmentally she was frozen in time...she was forever 3 years old.
Her older brother, Richie, visited her every week.
Their mother passed away several years ago.
Their father has not been in the picture since they were children.

Here is my question:
Who attends her funeral?
My heart broke.
For him, for her, for the extended family...never knowing her.
So many missed opportunities...unreached potential.
Inconceivable...the difference 30 years makes in our perception of "disabilities".

So...I went.
I attended the funeral of the family member that I never had the opportunity to know.
I...along with approximately 10 others...paid my respects to Anne and Richie.
She rested in her casket...trimmed in pink.
Just a handful of flower clusters around her...with ribbons reading "Princess".
Inside, tucked under her small hand...her baby doll.
Very obviously loved dearly by her...tattered clothes and matted hair.
She wore a pink shirt, complete with sparkles.
Somehow it all looked so "right" and appropriate.
What broke me most was...the subtle sound of sobs coming from the front row.
The amazing women, who had loved and cared for her.
Her "family" from the Home.
There were approximately 7 of them. *yes, the majority of attendees*
Hugging and loving on each other.
Gently leaning in and kissing her cheek.
Making sure everything in the casket was...just so.

Again, I am changed.
Moments I pray that I never forget.
Life is so fragile...short.
No regrets...physicians don't always know best.
Advocate, encourage, inspire.

*the names have been changed...just because.