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!

Happy Birthday Hope!

I was wide awake this morning at 4am. I don't know if God woke me or my subconscious. Either way, that was just around the time I awoke six years ago after the near death experience birth of my little Hopey. I remember opening my eyes to see Chappy first and then a young Dr. Jay Campbell who was still interning under the tutelage of the amazing Dr. David Liske, Hope's primary cardiologist at that time.

Since this was our first meeting with Jay, he was stiff, very professional, and used a deep voice to attempt to bely the fact that he was still new at the game of delivering heart wrenching news: "As you know, your daughter is in NICU. We have already performed some tests on her heart and things appear stable....." He went on to describe her outlook, which was not positive at all....and I tuned him out.

I felt fear like I have never felt before or since in those few minutes with Dr. Campbell, because when he walked into the door that early morning, he brought "Reality" tucked beneath his arm wearing a flashy red dress to taunt me. With his first words, "Reality" moved from neath his arm and began to seductively dance in the room in front of me....she was all I could see....all I could focus on. Her eyes bore into my soul, and just before Dr. Caldwell turned to leave after completing his update on our new baby who I had yet to meet, "Reality" lunged at my hospital bed and spit into my face the words: "Your life will never be the same again" before taking her place with the kind Doctor again and going on her way to visit the next unsuspecting mother.

"Reality" has visited me many times over the years. She has been at every one of Hope's heart surgeries and even pops in to visit at many of the cardiologist visits....sometimes I see her in public places when kind folks bend down to speak to Hopey only to find she doesn't have the ability to speak back....and every time Hope has a meltdown from being overstimulated by her surroundings, the woman in the red dress shows up to point her finger and laugh.

Some may wonder how I have dealt with the devil female all of these years, and the answer is very simple. Let me tell you about my other friend:

Three days after birth, Hope had a stomach surgery....three months later she had her first open heart surgery and coded. Up until the day she coded, I didn't know how much I had fallen in love with her. I had been in such "nurse mode" making sure she ate enough, took her medicine, made her cardiologist appointments, etc. that I had not even thought about loving her. I had, I guess, become a task mom without realizing it. The cardiologist's staff had warned me that I had only three months to get Hopey ready for life-saving open heart surgery, so I went to work as any person would, and focused on that goal.

On that fateful day, I had left Hope for the very first time post-heart surgery to go get something to eat. The hospital had become my home since the day of her surgery; days had passed and the nursing staff continually urged me to take a needed break for "fresh air". I was determined not to leave, but when they explained Hope was being taken off of the machines and would need me to have energy to help her adjust to post-surgery pain once she was fully awake, I relented. And just when Chappy and I sat down at the restaurant only 1 block away, we received and emergency call that changed everything: "Melanie, you need to get back to PICU right away. Hope coded and they are doing CPR on her right now!"

I know what you are wondering: did "Reality" show up that day? Yes, she did. She jumped back into the car with me and stayed with me until I made it to PICU. She mocked me: "Maybe she will die and you won't have to be her nurse anymore"....."She's been unconscious long enough that she'll probably be brain dead"....."She's going to die; you are going to have to give her a funeral and bury her." My mind was reeling, and "Reality" was making things worse. PICU would not let me in to see her, so when the next person came through the door, "Reality" and I burst in and ran down the hall to Hope's room. It was just like you would see in a movie, but I was living it. The nurses at the station ran out to stop me: "You can't go in there!" And I turned and saw. Oh God, I can still see.

I shoved "Reality" behind me, deafened my ears to all of the noise around me, and I watched a team of doctors and nurses around my little 9lb baby girl who was still wearing a profoundly visible bloody zipper on her tiny chest, try to save her life.

In the eery shock of that moment, time stood still for me. I no longer had any feelings at all. I know nurses were still shouting at me, trying to take me away from the scene, but it was as if I was not part of that realm or time. I was physically there, yes, but the rest of me had checked out. Had frozen.

This is where my salvation came. I met a new friend that day, and she was not wearing red. In fact, I am not even sure if my friend is a male or a female. This friend I cannot see or hear, but I can feel. As I stood there outside of Hope's room that day, my friend came to me for the first time and wrapped arms around me of comfort I have never felt before. Without those arms, I am positive I would have fallen. Those powerful arms held me up that day and have held me up more times than I can count since. Every time "Reality" comes to provoke, my other friend shows up to console. Once my new friend entered my life, there was no turning back. The funny thing about this buddy, our relationship continues to grow and blossom. Just when I think I have had all I can take, he comes around and opens the floodgates of my heart even more. Unrelenting, he shows up every morning when Hopey opens her sleepy eyes and grins, every time she takes my finger and pulls me along to come play with her, and even when I crawl in bed with Hopey each night to hold her until her eyes become too heavy to stay awake any longer.

I have a name for my friend: "LOVE".

Today I celebrate a miracle that happened in my life six years ago when an imperfect little angel invaded my life and crushed things I had been unable to see....my pride and selfishness being the top two....while introducing me to "LOVE" like I would never have known without her.

Natalie's birthday is on September 5th, so my parents always come and celebrate Hope and Natalie's birthday over one big celebration weekend. I hope you enjoy the video above (but forgive my overzealous singing---I will do pretty much anything to make Hope happy!)

1 Corinthians 13: "Love is patient, is kind, does not boast, is not proud, does not dishonor others, is not self seeking, is not easily angered, keeps no record of wrong...rejoices in truth, protects, trusts, always HOPES, and pererveres!"

A Different Perspective Of History

To all fellow lovers of reading and history, get ready to be jealous. I found this little gem on Ebay and couldn't be more excited to dig in. This book was used in classrooms in the early 18oo's....many years before the War Between the States divided our country and changed our course from limited government forever.

Because that infamous war was craftily used for politically driven purposes that have led to our nation's continual rising dependency on government, and in turn, our government's very obvious self-centered notion that they can spend our money better than we can, I have often wondered about its impact on post-war history books. For instance, was history re-written on occasion to further an agenda? I have long suspected that might be the case. What better way to find out than to read pages from a worn out, forgotten book of old to find out for myself?

I have just had the opportunity to open the pages and begin to read, but wanted to share a few points regarding "History" from the prespective of the author:

1. "History sets before us striking instances of virtue, enterprise, courage, generosity, patriotism...and encites us to copy such noble examples. History also presents us with pictures of the vicious ultimately overtaken by misery and shame, and thus solemnly warns us against vice."

2. "History...opens the hidden springs of human affairs; the causes of the rise, grandeur, revolutions, and fall of empires; it points out the influence which the manners of a people exert upon a government and the influence which that government reciprocally exerts upon the manners of a people. It illustrates the blessings of political union, and the miseries of faction; the dangers of unbridled liberty, and the mischiefs of despotic power."

3. "History displays the dealings of God with mankind. It calls upon us often to regard with awe His darker judgments, and again it awakens the liveliest emotions of gratitude for his kind and benignant dispensations. It cultivates a sense of dependence on Him; strengthens our confidence in His benevolence; and impresses us with a conviction of His justice."

4. "Besides these advantages, the study of history.....chastens the imagination, improves the taste, furnishes matter for conversation and reflection, enlarges the range of thought, and strengthens and disciplines the mind."

At some point, I promise to share my findings with you!!!