Lydia and Morgan

When we take Hopey and Charlie out in public, we always get a reaction.  The reaction is either very positive or very negative....never anywhere near the middle.  After spending some time with Morgan, we realized she experiences the same.  Her arm, which she affectionately calls "Lucy" when it is behaving and "Lucille" when it is not, violently thrashes around at will....sometimes grabbing her hair and pulling it out while at other times grabbing the hair of the person standing nearby.  Every waking moment, Morgan is forced to be acutely aware of making every attempt to control a limb that is bent on being out of control.  And "Lucy" is strong, which makes the task one that wears Morgan out.  She sits back on her arm, hooks her arm onto her clothing, and/or wrestles her arm down with her other hand....all day long, every single day.  But during our time with Morgan, we were able to get a brief glimpse of the spiritual power "Lucy" has brought into Morgan's life.  While some people avoided Morgan like the plague, others were beautifully drawn to Morgan because of her disability; and it was probably because Morgan handled herself in such a magnificent way.  Instead of trying to shy away from crowds of people, Morgan is extremely outgoing.  We watched in awe as she introduced herself to strangers while holding "Lucy" back and explaining to people through very labored speech (also a result of her brain injury) about the reason "why" her arm acts up.  Human nature is to be in a hurry and to wait for nothing, but "Lucy" brought out a different side of people, what I would consider to be the best side of people, who became willing to stop their hustle bustle to wait for Morgan to tell them her story....and most even left Morgan with a tight hug (and a tear or two) before moving on.   We listened as Morgan laughed about her disability as she instructed men to "turn their heads" if "Lucy" suddenly decided to strip her of her clothing while her arm was hooked onto the shoulder of a blouse....or while she shrugged her shoulders with an apology when "Lucy" pinched someone on the arm (or worse, their fanny).  When Morgan freely laughed about her arm, others felt freedom to laugh too.  Morgan's bright smile told strangers all they needed to know about her....she is just like everyone else aside from that aggravating arm and a bit of labored speech.  And I would argue that point to be a primary message of the gospel.  The Lord says "Come as you are"....we don't have to be perfect.  Through "Lucy", Morgan Moeller is breaking down walls....the same walls that were in my life prior to Hopey and Charlie's arrival.  I am thankful we serve a creative God who knows we need the weak in order to lead those who believe themselves to be so strong:  "....God has chosen the weak things of the world to confound the things which are mighty."

Hopey's Heart Appointment Update!

Heart Check Next Week!

This is how the princess is awakened every morning by her royal servants (the rest of the family).  Five more days until Hopey's next heart check, and we are still believing for a miracle!  Thank you for your never ending support for our baby girl.  We are praying the echo shows the aneurysm in her heart is completely gone!!!  We are so blessed!!!

Fetal Alcohol Syndrome Doesn't Define Me

This was a homeschool project Natalie and I worked on together....we hope it gives a new perspective on many levels. Let us know what you think!

The Plans of God

Many of you have been kind to email and ask why I have been absent from the blog-o-sphere. Let's just say that studying for the LSAT and getting into law school takes way more time than I had imagined. Thankfully, the task is behind me now, and I begin classes on February 15th.

On the day Hope was born, I was miraculously re-born. Blinders dropped from my eyes, dull senses became razor sharp, and coping mechanisms morphed into warrior mentality. With a chip firmly resting upon my shoulder, a little girl sporting an extra-chromosome poured into and occupied the whole of my heart. And for her every weakness, I became strong. By the time Charlie entered my life three years later, I was not surprised to reach out my hand and find a brand new chip was growing on my other shoulder.

Stories of special needs children being abused at school routinely find a way to my email box. One child regularly zipped in a gym bag while at school, others locked in closets or strapped down to chairs, and still others bruised by those who are supposed to protect them. As I would read the reports, my soul would ache for someone, anyone, to come along to do something. And then one day my voice changed from "one of our disabled families should become an attorney to fight for these children" to "why don't I become an attorney and fight for our disabled children?" It was as if that thought had been present in my mind forever, as much a part of my life as sweet tea and buttered cornbread.

In retrospect, that thought was most likely born on September 14, 2005, the day I was given my first glance at Hopey's face. God must have felt a tinge of pain for me that day as He carefully planted that thought in my mind and considered the path I was to travel. Both Hope and I hung desperately onto life through delivery to be met with a cold introduction to one another before Hope was whisked away to NICU in a matter of mere seconds....I wasn't even allowed to touch her. "This is your daughter. I am taking her to NICU now." Still flat on my back being sewed up from a cruel C-section, I could only see two pitch black eyes staring back at me through a swaddling blanket. The moment our eyes locked, in that split second, I believe God brought the thought he had planted to life.

To say the steps have been difficult would be a laughable understatement. Through the flood of post-partum depression abandoning me with panic attacks and shaking my body randomly throughout the day and night for the first eighteen months of Hope's life....through three open heart surgeries mowing a scarred path down Hope's chest and leaving behind a defective heart prompting the ever-present possibility of an early good-bye to a baby girl I adore....through the daily struggle to communicate with two little ones who lack a voice but have so much they want to say....through the four eyes with impaired vision who trust me to see for them and keep them from falling down....through becoming aware of Charlie's moderate hearing loss and figuring out new ways to manage his inability to walk....through never feeling like I'm doing enough but failing to muster energy to do more....through sensory integration challenges that sometimes hurl Hopey onto the floor into a fetal position causing tears to pop from her face and screams of terror to escape from her mouth while those same challenges prevent Charlie from swallowing any food that has not been pureed....through all of this and so much more.....I find myself inexplicably loving with an insane love driven by an unseen force that has linked me cohesively to two little people who count on me to meet their every single need. The weight of it all. The joy of it all. Only God could write a story that makes absolutely no sense at all but fits perfectly.

The Creator of the Universe, as corny as it might sound to some, chose Hope, Charlie, and me for this task. Hope and Charlie have submitted to God's plan beautifully. But to get me here, the Almighty had to rattle me, frazzle me, and crush me. My "routine" looks somewhat like a see-saw: Somedays I bask in His glory....other days I wrap an imaginary curtain around me to close Him out completely. There are moments when I am so enraptured by my love for God that my hands spontaneously raise at the same time my knees are hitting the floor in cries and songs of praise....but there are other very real occasions when I raise my fist to Him in hate. All of this raw emotion, tangled in abandoned adoration for two who are weak and considered "less than" by most of the population of earth, God has used to fuel me and change me.

He has scripted the plot and the finale, given me the role I am to play, and continues to sprinkle me with signs of His presence every now and then to keep me focused and on cue. I have chosen to accept the call to go to law school, and now I wait to see how His plan unfolds. One thing is certain; the life of a follower is never dull!

"For I know the plans I have for you says the Lord...." Jeremiah 29:11

Two Shocking Stories

These pictures depict two separate heartbreaking events that occurred within the last few days....one in China and the other in Philadelphia. The events accurately depict humanity at its most debase form, proving without a shadow of a doubt that without God, man is a complete and total mess:

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1. A two year old in China was hit by a van when attempting to cross a street. The driver, on his cell phone reeling from a recent break-up with his girlfriend, pauses only a moment after his front tires have rolled over her body. Then, hoping he won't get caught, he allows his back tires to roll over her body before fleeing the scene. Eighteen people pass by the little one in the street who is hanging onto life....a motorcycle weaves around her body, another truck allows his tires to run over her little feet and legs....a mother hurries her own child past the body....no one stops. Finally, a garbage collector pulls the little girl to the side of the road and another woman comes and retrieves her body. Miraculously, the two year old is still clinging to life in a hospital (reminding everyone of the parable of The Good Samaritan).

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2. Four mentally disabled individuals were kidnapped and then were recovered from a locked steel door in the basement of a Philadelphia apartment complex. One of the individuals was chained to the boiler. The room, reeking with the stench of urine and feces, is not much larger than a walk in closet....not tall enough to stand up straight. Malnourished and starving, each of the individuals also has physical impairments, one of them is blind. The reason for this atrocity? The ring leader of this three person operation decided to kidnap these handicapped individuals in order to steal their monthly social security checks.

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As I sit and ponder these events that seem beyond unimaginable, I am woefully reminded that when a society is depleted of the all important value of ALL life, this type of barbarous behavior is bound to happen. History proves that point.

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Tying into society's conflict over the value of life, on Monday the new Down syndrome test was rolled out in 20 major cities throughout the United States. For pregnant women in those cities, and soon in every city throughout the United States, a simple blood draw will tell with 98% accuracy whether babies growing within their wombs have an extra chromosome as early as 10 weeks into the pregnancy. And these moms-to-be will be offered the option of abortion, and soon, Down syndrome will be eradicated as predicted and hoped for by so many in the medical community. Yes, sadly it is true, eradicated completely.

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Last night, Lydia's homework assignment was to gather 10 questions her class could discuss on Matthew 5. We sat together and I read the entire passage out loud as we considered different thought-provoking questions that might give her 7th grade class pause to dig a little deeper. And then a God moment happened as He used Lydia to nudge me toward digging deeper. Just as I had finished verse 8: "Blessed are the pure in heart, for they will see God", Lydia very nonchalantly said: "Well that explains why Hopey sees angels all of the time."

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I could have continued reading at that point or I could have chosen to offer my own opinion about the subject, but instead I somehow found wisdom to ask her to explain. And she did, quite beautifully:

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"Well, Hopey doesn't really sin, because she doesn't act bad on purpose. If she does something bad, it is usually because she can't express herself and has become frustrated for some reason....that's not really sin. And I guess because she is not capable of sinning like the rest of us, her heart is as pure as any heart in the world. And God says the pure in heart will see God which explains why she sees angels sometimes. Maybe she is even seeing God....wouldn't that be cool?" Then Lydia got up and strode across the room to give Hope a big squeeze.

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Oh, how God has changed my life and my perspective with the gifts of Hope and Charlie. And how astonished I am to see how He is constantly changing the lives of Caleb, Lydia, and Natalie because of our two little ones. I blubber every time Caleb pats Charlie's little bald head and says: "I played hard for you tonight bud" after a football game....I melt each time Lydia bravely tells a group of teenage peers to please not use the "R" word and proceeds to share her love story about Hope and Charlie....and I sleep more soundly each night Natalie chooses to tuck into Hopey's bed for the night (even with her broken arm she earned while playing volleyball a couple of weeks ago) just because she wants to be close to her little sister.

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Our family has learned and embraced the fact that each individual God creates is a masterpiece that has been sculpted intentionally for His purposes. He is never taken by surprise and never makes mistakes. All too often we become so wrapped up "climbing the ladder of success" or "keeping up with the Jones'" that we miss the life lessons all around us. We are so focused on "stuff", we miss

L-I-F-E and living!

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To close, while I am beyond saddened and disgusted by the two stories that began this post, I humbly accept it was God who created evil so that we would have the opportunity to choose Him and His Way. However, having made that statement, I refuse to sit idly by accepting evil. No, as long as I have breath, I commit to stand:

For truth and honor even though it sometimes interferes with relationships....

For God's plan over man's desires even though it means being called to give everything away....

For the weak who I am thankful to serve daily....

And for the ONE who defeats evil and wins in the end! I am sooooo glad He wins in the end!!!

"Vengeance is mine, says the Lord"

Happy Down Syndrome Awareness Month

I am not a big supporter of all of the holidays and special occasions that have creatively been dreamed up over the years to appease different groups of people while padding the pockets of retailers, but I am a huge fan (for obvious reasons) of Down Syndrome Awareness Month. This month gives voice to those who have no voice: "We are more alike than different!"

Down syndrome has been a blessed gift to me: It has meant a slower pace of life, taking intentional time to appreciate little things that others miss, giving thanks for each day our family enjoys good health, working harder to achieve goals I would never have dreamed of attempting, and experiencing a whole new kind of love that is gut-wrenchingly deep and vulnerable.

Thank you, blog readers, for allowing me the opportunity to bring experiences with Hopey and Charlie into your lives. Your acceptance of them today equates to a brighter future for them tomorrow!