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!!!

God's Call

Wrestling with the Lord seems to have become an every day occurrence for me. Can you relate? Truthfully, I am aggravated to know Hopey is going to have to undergo another open heart surgery. Four open heart surgeries, Lord....really??? At the same time, her frustration level is beginning to grow since words will not come. Sentences, ideas and thoughts are bundled up inside that pretty little head of hers, but they just cannot seem to make it to her mouth.

The other night, Lydia and I laid in Hope's bed for thirty minutes and sang to her as she worked diligently to sing along with sounds eeking from the depths of her soul. She squeaked and crooned while looking longingly from Lydia to me as if to ask: "Why can't I do this?" Night after night, day after day, she makes her very best attempt.... and she fails. I can see the disappointment in her eyes and it makes me so sad. There is nothing I can do to help her except stay by her side and wait along with her until words come: I say, "It's ok Hopey, some day you will have the ability to speak everything that has been on your mind your whole life and sing like a bird little sister!" She understands what I am saying, and I think she believes me.

Then there is Charlie who cannot walk or eat any type of solid food. Just like Hopey, he has the work ethic of a disciplined soldier. Both daily give all they have to give....but success is continually just out of their reach. The achievements Hopey and Charlie lack are in tasks we take for granted every moment of every day because we can't even think back to the time when we said our first word, ate our first bite from a cracker, or took our first step. Most of us achieved all three of these goals by the time we reached one year of age.

So, when I hear parents bemoaning the fact that their son is not on the "starting team" for local high sports....or their daughter only received runner-up in the latest beauty pageant when she should have been crowned queen.....excuse me for not being sympathetic....and forgive me when I roll my eyes and walk away. Good grief, I often wonder, is this how I would have been if God had not providentially placed Natalie, Hopey, and Charlie in my path? Life really is about perspective, which brings me to the latest Hollis news:

As you may have gathered by now, God has not opened doors for us to adopt again. In fact, Hopey's continual battle with heart issues prevents us from travel outside of the United States. On the adoption front, therefore, we will continue to financially support other adoptive families until the time God might choose to bring us another addition (our heart and home is always open). Now for the news: in October I will be sitting for the LSAT with plans to become a special needs attorney to advocate for the special ones in my state. My Write In run for State Senate last year taught me a valuable lesson that has forever changed my view of the world; I learned all who have been blessed with a voice have the awesome opportunity (some might add responsibility) to stand daily on behalf of the weaker ones in society. This is especially important since many, like my Hopey, cannot speak for themselves.

Yes, I am more frustrated than not as I watch Hopey and Charlie attempt to do the simple things of life each day without success....their constant struggle breaks my heart.....but the frustration is serving a purpose, because it is directing me to become a better mother and more of a fighter. In response, until Hopey speaks, I will boldly speak for her....and until Charlie can stand and walk on his own, I will rush to stand up for him! It always amazes me how God uses my brokeness to remake me and to teach me something new. (Lord help me as I plan to go back to school...ugghh!)

"Defend the cause of the weak" Psalm 82:3

To conclude, Hope and Charlie started preschool together a couple of weeks ago....I will give a preschool update once they get more settled into the routine. Let's just say it is a bit nuts right now as they adjust.

Breaking Down The Walls

I was contacted by a friend several days ago who asked me to speak to her book club about Hopey's heart. Her group was just completing the book, "When Crickets Cry" by Charles Martin, which is about a little girl in need of a heart transplant. It was decided my real-life experience in dealing with a heart patient might prove to be interesting for the group. Never one to turn down an invitation to speak about God's wonderful gift called Hopey, I immediately said "yes" and decided to read the book in order to gain the perspective of my audience. As it turned out, God's additional purpose for having me speak to that awesome group of women was because He knew I would devour every page of the fiction tale about a character struggling to conceal a hidden past that hauntingly continues to rear its ugly head. In the end, the star of the book is forced to confront his past which brings great hope to a community and new life to one little girl, Annie. In short, the book teaches a lesson in humility: Ultimately, God is God, and we are not.

To get a glimpse into my love affair for sweet Hopey, a person really has to see that ringlet curled bundle of joy in action. Since the women I would be speaking to have never seen or even heard of Hopey, I decided to bring her along. Lydia brought her guitar to help me kick off the evening, and dressed in a yellow dress topped with a big orange bow, Hopey walked, hand in mine, in tow. After a short introduction, Lydia began playing a Hopey favorite: "This Little Light of Mine".

If you know an individual who has Down Syndrome, you are aware they are the most honest individuals you will ever meet at every stage of life. Hence, they do not put on airs for any group of people. Ever. If they are in a good mood, you know it.....but if they are in a grumpy mood, they don't hide that either. More importantly, moods can (and often do) change quickly. Hopey has an uncanny sense of knowing when a group of people are open to her versus when a group is not comfortable with her disability. Last evening, thankfully, the book club was eager to get to know my little heart patient, and she sensed it immediately.

As soon as the music began, Hopey smiled, danced, tried her best to sing, and was friendly with most everyone. She even reached out to give a couple of hugs. To say she was a total "hit" would be an understatement. Hopey achieved my goal for her with flying colors: she showed the group that she is a real little girl....and that is a HUGE step in breaking down invisible barriers that divide the "typical world" from the "disabled world".

As you know, for many years the disabled were hidden away in institutions or left at home with sitters where they would be kept safe from stares, rude comments, and danger. An untintentional consequence of those actions was the general public, as a result, lacked the opportunity to relate to them during those years. Reminded of the old adage: "Out of sight, Out of mind",unfortunately, because the disabled were "out of sight" for so long, when the wave turned and parents of the disabled began bringing their children out in public again, a painful learning curve was set in motion that has taken 40 years to establish. It remains a work in progress, but as a nation, we are on the right track.

Parents with disabled children in my generation continue to tear down barriers with the help of "Special Olympics" @ http://www.specialolympics.org/ , founded in 1968 by Eunice Kennedy Shriver...."Best Buddies" @ http://www.bestbuddies.org/ , founded by Anthony Kennedy Shriver in 1989....and the inclusive classrooms in our public schools. All of these serve to engage the community at large by purposefully forging relationships between the so-called "typical" and "disabled". Change takes time, just ask Joshua of old who didn't give up after circling the walled city of Jericho six times with no result. Pretty soon, it is my hope, we will live in a society without walls....a society that totally misses whether a person is black or white, has two legs or only one, and/or has an IQ of 70 or 120. In reality, each human life represents one uniquely and perfectly created by the Almighty who does not make mistakes. Jeremiah 29:11 reminds us that God has a plan and purpose for us all.

So my night with the book club ended well. Before leaving, one even told me she plans to make more of an effort to speak to the disabled....she admitted she sometimes hasn't known what to say or how she will be received. I loved her honesty. Parents of disabled children already know the "typical world" is uncomfortable; afterall, prior to having our "special ones" we were all part of the "typical world" too.

Chappy retrieved Hopey from the book club after the second verse of "This Little Light of Mine" and took her home so I could speak to the group. When I returned, she was already tucked into bed and fast asleep. As I looked upon her chest, rising and falling with each beat of a broken heart, I had to shake my head in wonder at how God continues to use such a fragile little girl to break down walls of misconception that were built with the best of intentions.

And it came to pass at the seventh time, when the priests blew with the trumpets, Joshua said unto the people: "Shout, for the Lord has given you the city." So the people shouted with a great shout, and the wall fell down flat. (from Joshua 6:16 and 20)

If you would like to break down the walls today by doing something tangible, please click on the following link that will lead you to the story of a little girl with Down Syndrome. A gift of only $10.00 or $20.00 could mean the difference of life and death for this little one; and the only thing separating Robyn from a forever family is money you and I might spend on a lunch for food she is literally starving for. A college student, Chelsea Pearce, who is "college poor", has taken on the challenge of raising adoption funds for Robyn. Her love for the "least of these" was spurred by her on-going relationship with Hope and Charlie. Here is her link:

http://youwillgooutwithjoy.blogspot.com/2011/05/555-project.html

Next blog post: Hope AND Charlie begin a new preschool year TOGETHER!!! (This should be interesting).

Hopey Update

Dear Blog,

Hopey's heart appointment was yesterday, and we were relieved to learn the aneurysm in her heart remains unchanged. The leaking in her aortic valve, however, has increased. It looks like Hopey will face a fourth open heart surgery at some point, but thankfully, not this year. When we left the hospital, I swear I felt 1000 pounds lighter....as if a boulder had been lifted up off of my shoulders. And I could breathe again.

This has been a very interesting year for the Hollis family. Yes, compared to other families, every Hollis family year is unusual as we learn to navigate the unchartered waters of raising two young ones with Down Syndrome who currently lack communication skills and the ability to avoid danger. But in addition to our "usual" unusual, this year, twelve year old Natalie has been battling a seemingly unseen force to find her own identity through a Russian birth steeped in alcohol abuse that eventually led to an American adoption. At the same time, sixteen year old Caleb has made his best attempts to overcome raging hormones and flee from beautiful teenage girls who routinely offer sexual favors to him. The enemy has been hard at work attempting to steer Caleb and Natalie off of God's path for sure.

I am thankful for communication; without it, I am 100% convinced this family would be in trouble. When our children were very young, we started a tradition called "The Family Meeting". It began with a precious mother of 14 who used to work for my beloved handicapped grandmother. Her name was Goldie. If I sit and ponder for a moment, I can take myself back in time and hear Goldie's legs, covered by thick nursing stockings, rubbing together as she would slowly make her way down the hall. I can hear her cackling laughs of joy and feel her tight hugs. She came to work for my grandmother when I was only 3 days old, and I was by her side days before she drew her last breath when I was 20.

Goldie loved to tell me stories, especially when she was out on the back porch breaking green beans into a brown grocery sack. As I would sit beside her, probably more a hindrance than a help to her, she often told me stories about how she and her husband (Frank) would hold court at home in the evening with their many children. She would giggle as she would recall how fired up her husband had become at one of the children. Then she would shake her head with a smile and say: "Woo-hoo, Melanie, those kids are a handful." At a young age, I decided I would "hold court" in my family someday too....just like Goldie.

True to plan, each evening before bedtime, our family gathers in the Great Room to discuss our day. This is a time for everyone in the family to have an opportunity to talk about something that has brought them joy, something that is bothering them, a dream or a discouragement, a goal or an achievement. Since each member of the family has a turn to speak, and must say something according to the "unofficial rules", communication has become a natural way of life. Hopey and Charlie remain in the room as well, and Chappy never fails to turn to them and ask: "Anything to say tonight Hopey? how about you Charlie?" (I can't wait until one of them finally speaks up and surprises us all!)

When the big kids were young, Chappy and I used the family meetings to detect sibling rivalry and would use those moments to subtly promote peace among them. As our children have morphed into teenagers, though, Chappy and I find the family meetings have become valuable platforms where we can openly discuss peer pressure, temptations, good choices, bad choices, and consequences. Following each meeting, we remind them they can come into our bedroom to discuss more private issues (our door is open until 11pm). It never ceases to amaze us when we hear the occasional tap at our door around 11pm. On cue, Chappy turns to look at me with an "uh-oh" look on his face. Typically, those 11pm visits surround pretty serious subjects. We take a deep breath, put a smile on our faces, and open the door to whatever subject comes our way. Lately, Caleb has worn the paint on our door nearly bare (darn those teenage girls who just won't give up!)

The evening before Hope's heart appointment, the subject was, of course, "Miss Hopey". The kids wanted to spend time revisiting the possible "why" God chose to give Hope an extra chromosome and a very messed up heart. The discussion took a turn, however, that led to each of us naming the positive changes in our lives that have occurred because of Hope's condition. And as Hopey made her way around the Great Room in true Hopey fashion: retrieving hug after hug from each of us....spinning around on her tip-toes in the middle of the floor while dancing to songs playing in her head....plopping down with a flop on the ottoman followed by endless giggles....and occasionally pulling the dog's tail just to get a reaction....the verbal list looked something like this:

Caleb: "Without Hope, I probably would have taken my athletic gift for granted. Because of her, I want to make the most out of my life. I want to live the life Hope and Charlie will never have. I want them to be proud of me."

Lydia: "I would've never raised money to help save Darya, Evan, Sasha, and Carlene from the orphanages, because I wouldn't have known about Reece's Rainbow or Down Syndrome. Now I look forward to fundraising every December."

Natalie: "I love Hope and Charlie more than anyone else in the world, and I would never have known what that love feels like in my heart if Hope hadn't been born."

Chappy: "Hope coming into my life has softened me, made me slow down, and has caused me to reconsider what is really important in life."

Melanie: "Before Hopey, I was drowning in spiritual pride but could not see it. God used Hope to break me into pieces so He could re-make me into someone He could teach and use. Without Hopey, we wouldn't have known the red-headed blessing called Charlie."

We ended the evening in prayer for our little angel girl, prayers for healing and prayers of thanksgiving....prayers of gratitude for a creative God who uses the weak to confound the strong. Then we sang at the top of our lungs: "This Little Light Of Mine", to which Hopey came to life. Arms stretched out and smile plastered across her face, she tried her best to sing along with us. Her excitement was so great, at times she would have to stop to jump up and down and squeal with delight. We sang, and we sang, and we sang.....God met us there as he often does, and we wept together out of pure love for our little imperfect one who has brought so many unexpected blessings to our lives.

"God chose what is weak in the world to shame the strong" (1 Corinthians 1:27)

16 Days From Today

Dear Blog,

It will be two years this October.....two years since Hope's third open heart surgery and the day I changed forever. "There is nothing we can do about the aneurysm in Hope's heart Mr. and Mrs. Hollis, we're very sorry"....though I distinctly heard the words with my ears, I fought them in my heart. "What does this mean....will she be able to live a normal life?" we asked, every fiber of our bodies seeming to plead along with our words for a positive reply as we asked the question. Four words have haunted us since that day: "We just don't know."

Since then I have lived in 5 month intervals. Following a 6 month heart check, I make a choice to pretend Hopey doesn't have an aneurysm in her heart for 5 months....but when we begin to near the date of the next appointment, life eerily stands still as the suffocating dread closes in on me again, sadly becoming an all too familiar visitor.

It is during these times, I have discovered, all of my senses go into hyper overdrive where very little escapes my notice. As has become almost customary, God again draws me and our family to the beach. He has much to teach this faith-craved student, and appears to believe this tactile learner learns most in the midst of His wondrous creation. So, while walking along the shore, I allow myself to drink in the Father's glory and abandon myself to Him.

Eager for His instruction, I first notice the ornate sizes and shapes of carefree fish zooming through the crashing waves and am reminded of the freedom God offers me because of a sacrifice made on my behalf eons ago; I hear the reverberation of thunder and witness cracks of lightning streak angrily from the sky into a once crystal blue sea turned black and consider the awesome power of the One I serve; then I giggle at funny looking sand crabs with big bugged eyes dance across the sand on imaginary tip-toes before diving into a hole I never even noticed only to find myself awed at finding true laughter in the midst of distress; coming upon a barely breathing jelly fish with long royal purple colored tentacles I see a lone piece of drift wood only a few feet away and use it to gently push him into the water for another opportunity at life when I suddenly recall scripture promising that each of our days have already been numbered. With each hour comes new reminders. By now I have surely repeated a thousand times: "I know, Father." But in all honesty, I'm not sure if I really do.

I still struggle with fear of the unknown; I guess that is part of adult life. Hopey seems to be seeing angels much more frequently, and I wonder why. It was just before her first open heart surgery when I learned about Hope's angels. In the pre-op waiting room, only minutes before she would be rolled out for surgery, the nurse non-chalantly whispered while taking Hope's blood pressure: "You are seeing your angels, aren't you Honey?" Not one to let a statement like that drop without some type of explanation, I asked the nurse to repeat herself. She shrugged and said with a smile: "I have been at this for a long time, and it happens with these little ones who can't speak alot...especially the ones who have Down Syndrome. Just watch her for a minute." And we did. In fact, we watched Hope for several minutes as her head turned from side to side and her eyes followed invisible friends all over the small curtained room, lighting up with a twinkle followed with a grin. "You see, I told you so. This little girl is being entertained by her angels."

I have seen those looks many times over the years since. Now I simply ask her: "Hopey, are you seeing angels?" She nods her head and flaps her hands with giggles. Lately, however, the events have been much more frequent, especially in the early morning. Hopey will raise her little arms and almost dance around while giggling out loud and looking from one angel friend to another. At times, her giggles are so intense she falls to the floor and rolls around uncontrollably laughing out loud. Chappy, the big kids and I become spectators until she finally spots us and comes to give us full hugs. No doubts remain in this family about the existence of angels, that's for sure, although we often debate about what the angel friends must be doing to make Hopey laugh so profoundly. And me, momma bear, I admit I find little comfort in knowing they could be the angels who would usher Hopey home to be with the Lord if her aneurysm did suddenly burst. I know an angel's job is not to give life or take life away, so I never try to speak to them---instead, I find myself requesting of the Almighty to give me more time. So far, thankfully, He has.

Hopey's heart condition has been a painful burden laced with significant lessons and opportunities. How many moms take their families for granted? I would guess many do. Since September 14, 2005, the day of Hopey's birth, I have not. From this aspect, my life was altered in a magnificent way. I truly live each day with my family as if it was the last we were all together. My motto: NO Regrets.

I routinely date my lover, belly laugh at all of Caleb's silly antics, happily take time to sit and write love songs with Lydia, feverishly work alongside Natalie as she attacks her learning disability, nibble at Hopeys toes and count her ribs for screams of delight and pick Charlie up for cuddles every time he crawls over and pulls up on my leg with a bright smile plastered across his cute little face (20+ times per day at least). I look at them...I mean I truly study their faces and features...I ask them countless questions so I will really know them...I hug them every time they are within arms reach saying "I love you" with each hug....I leave hidden love notes, praise every achievement, and cry with them when they're hurt...I watch hours of Barney and Sesame Street and have been changing diapers for 6 years straight (changing diapers for 2 babies for three years) without frustration. I take time each week to dance with them while singing at the top of my lungs, I make time to cook their favorite meals, and I kiss them goodnight every night. So while Hopey's aneurysm has brought much pain, it has also caused me to live life in a unique way. Since my family dynamic could literally change in an instant with a crude "pop" of Hope's heart, I live each day like it is our last. That has proven to be an unexpected blessing.

I hope others will learn from me. Life is fragile and fleeting. Refusing to consider the fact does not change it. And God continues to ask more and more of me....in fact, I believe He is asking more of all of His children. Just this week, through the challenges I am facing in gathering needed faith for Hope's next heart appointment, God is calling me to not only serve my family well, but to step outside of my comfort zone and free myself to serve others. I hear Him telling me to lavish His love upon others, and even though I am arguing with Him about my lack of time, He is reminding me to be obedient...that He will provide the time and opportunity. I only need say "yes".

"But I am hurting, Father, shouldn't this be about me?" , I ask. And He laughs at me, because he knows that I know. I am not here to be served, but to serve. Only in humbling myself to His way will I know Him, because He already knows me so well---He routinely dates me, He laughs at all of my silly antics, He has written the song of my heart and sings it with me, patiently He works with me through my life challenges, and He hugs me when I draw near to Him.... never ceasing to say: "I love you". He dances with me, weeps with me, asks me questions, and studeis my face intently. It is me who needs to to know Him, the great lover of my soul.

Hope's next heart check is on July 19th, only 16 days from today.

"Un-Learning" Is An Impossibility

I finished the book called "The Priest's Graveyard" by Ted Dekker a couple of weeks ago. My favorite quote from the book: "The problem with any philosophical consideration is that once you open a door in your mind, you can never close it. Once you learn something, you can never convince your mind that you didn't learn it." Through all my years of study, I can agree with that quote wholeheartedly. There are truths I have learned, however, that I wish I could erase and make go away. But, alas, 'tis an impossibility.

***

Dekker's fiction novel, this time, centers around five simple letters: P-R-I-D-E. If honest, we all struggle with those five letters daily in a myriad of ways. This book, though outlandish at times, teaches fundamental truth worth chewing on. And I have been chewing.

***
My story began three months ago when Chappy and I decided to build a conservatory style sun room onto the back of our home. We don't "need" a sun room, but we think Charlie and Hopey do. We watch children playing outdoors each day as the weather turns warmer and our hearts grow sad that our two youngest cannot go out without constant supervision. Hopey, legs not too coordinated, takes frequent tumbles and doesn't manage steps very well. As for Charlie, without someone nearby in the grass with him, he becomes overwhelmed and turns into a basket case of tears. With busy schedules, the best our family can seem to do is allot 30-45 minutes of outdoor playtime a day for the little ones....and they want more. It gets more and more difficult to tell a pig-tailed girl wearing big round rimmed glasses "no" when she is standing at the door with her face plastered against it wanting to go outside. "Dinner has to be cooked"...."I have to get the laundry out of the washer and into the dryer"....none of my excuses budge her. She stands with her face and hands pressed to the window panes. (And yes, at times I give in).

***

Chappy and I met with Rick Jaggers of Four Seasons Sun rooms to discuss building a conservatory sun room for Hope and Charlie in March. A conservatory is a room that is made of windows (even the roof is made of windows). Rick showed us the latest window option, that with a simple slide, could turn the glass room into a screened in room....allowing us to bring the outdoors safely inside for Hope and Charlie playtime. In addition, the room would have its own heating and cooling unit that could be adjusted to best suit their needs. We were so excited about this win-win solution!

***

Since we live in a neighborhood, we have to get approval from our home owner's association before making any changes to the exterior of our home. We filled out the paperwork, loaded into the van as a family and dropped the form into the mailbox of a friend of ours who is on the three member Architectural Review Committee (ARC) on March 16th, on our way out of town for Spring Break vacation. On April 27th, my birthday, we received the notice that our request had been denied. Denied. Why? Because two out of three people on a volunteer ARC Committee decided it would not meet the aesthetic look our neighborhood strives to attain. Their opinion decided our fate.

***

I looked through the neighborhood covenants and quickly realized the ARC only has 30 days to approve or deny an application. A surge of new energy gave root to hope that this conservatory could still be built. We dated and turned in our application on March 16th, but did not receive the denial until April 27th....well past 30 days! In addition, since the ARC took receipt of the application dated March 16th, did that not indicate it had become binding? My wheels were turning, and in response, I immediately sent out an email to the ARC and our neighborhood management representative to make them aware of their unfortunate mistake and to alert them we were going through with our conservatory addition.

***

This is where the trouble began. This is when I learned a "truth" I wish I could un-learn.

***

To make a long story short, one of my friends who is on the ARC committee told a lie. We left the ARC approval form in her mailbox (as instructed) on March 16th, but she told the other ARC members, the neighborhood management representative, and the neighborhood board that though our application was dated on March 16th, she did not receive it from us until March 31st. Therefore, according to her (and now the rest of the representatives), the ARC did in fact respond within the 30 day required period of time, making their denial of our request firm.

***

I emailed my friend to ask her what had happened. Had she been out of town between March 16th and 31st....had the form sat in her mailbox for two weeks? While she would not return my emails or make any contact with me, her husband did tell Chappy they had not been out of town and also admitted they check their mail sometimes twice a day since he works out of their home (he was a bit angry at the time because Chappy kept asking if they had been out of town---neither of us wanted to believe our friend would lie).

***

In trying to dissect this, I have come to a hypothesis: perhaps my friend, who is a mom with 4 young children, became busy and forgot about the application she retrieved from her mailbox on March 16th....then, when it was time for the next ARC meeting toward the end of the month, she remembered it and took it to the meeting. Finding herself too embarrassed to admit she had been holding onto our application for two weeks, she told the committee she had just received the form (never considering the other two ARC members might team up and deny our project).

***

Once they denied the project, however, she was in a real pickle....she could either gamble that I didn't really remember when I placed the form in her mailbox and tell a lie....or she could admit her mistake to the other ARC members making her look irresponsible. She chose the former. Unfortunately for her, our whole family was together when we dropped the form off at her house before leaving for Spring Break vacation---so it is a date we remember---thus impacting even our older children's view of this friend who signs every email with Romans 8:28 and hosts Bible Studies in her home.

***

We appealed the ARC decision to the board and were denied again. They decided to not get involved and overturn the ARC; as a result, no conservatory room for Hope and Charlie unless we are willing to spend alot of time and money on a court battle.
***

At first, I was so angry at my friend; after all, all she had to do was admit her mistake....everyone makes mistakes. But through reading Dekker's timely book, I was quickly reminded that if I spend time being angry with another's sin, I become guilty of the awful five letter word: P-R-I-D-E and end up missing my own faults and my own sin. I am no better than my friend or any other sinner on this earth. A tough lesson, but a good reminder to begin our summer.

***

"Let the one who has never sinned throw the first stone." (John 8:7)

Judgment Day on May 21, 2011

You would have to be living in a hole right now to miss the latest buzz 89 year old Rev. Harold Camping and his followers are making about the coming Judgment of God that is proposed to begin on May 21st (this Saturday) with a tremendous worldwide earthquake and the rapture of those who belong to Jesus. Many in Camping's group have sold all of their belongings, emptied bank accounts, and quit their jobs in order to spread the warning "to the ends of the earth". They have bet everything on Camping's Biblical teachings.
***
Yesterday's warning from senior official at the United States National Oceanic and Atmospheric Administration (NOAA), Kathryn Sullivan, couldn't have come at a more opportune time for Camping's followers who are scouring the daily news for "preachable proof" that doomsday will in fact occur in only two more days. Sullivan states: "The intensity of solar storms is expected to peak in 2013 and countries should prepare for potentially devastating effects." What kind of effects, you ask? Many experts claim there is a possibility a solar storm could prove to be powerful enough to knock the United States completely off the power grid, effectively destroying the United States and other countries simultaneously for months...maybe even years. Sounds a bit doomsdayish, doesn't it? At a U.N. weather conference in Geneva on Tuesday, Sullivan continued: "It is not a question of if, but really a matter of when a major solar event could hit our planet." The solar storm news plays right into the agenda of the "May 21st Judgment Dayers"....as does the recent rise of Southern tornado activity, the devastating Japanese earthquakes, cataclysmic floods, crippling droughts, food shortages, economic upheaval, and the ongoing crisis in the Middle East (including breaking news of President Obama's endorsement of Palestinian demands that Israel return to PRE Six-Day War boundaries). No doubt, each one of these pieces of news could be read directly from Bible Prophecy, but put together in a span of months, it does sound a bit apocalyptic.
***
I am currently reading a 900 page book: "God's War: A New History of the Crusades" by Christopher Tyerman in my quest to understand how Catholics, Protestants and Muslims ever came to believe killing one another in the name of God could have possibly been right. The human psyche always intrigues me, and the "May 21st Judgment Dayers" captivate my thoughts as of late just as much as the Crusaders of old. My question, "WHY?", is simple, but remains unanswered. Perhaps the problem lies with charasmatic leaders who prey on unsuspecting followers on a selfish mission for power. Or maybe it is the prideful lust to prove something, to prove anything, in order to fulfill the all too human need of mere adequacy. Could it be the evil plotting and planning of the enemy, satan, and his band of fallen angels? Or might it be that every living being wants to believe in a cause that is bigger than themselves?
***
While I believe in God with all of my heart, and also believe His return is not only imminent but impending, my nature will not allow me to be so presumptuous as to name the date and time for the day of the Lord's return. Oh, but I am not guiltless....I have been presumptuous too.
***
In 2005, out of desperation after learning Hopey might die soon after her birth due to a complicated heart issue, a stomach defect, and an extra chromosome, I aligned myself with the "Name It And Claim It" groups. Reciting healing scripture out loud for hours each day, I believed if my faith was strong enough, Hopey would be born completely healed and whole....and she wasn't. Chappy was on the bandwagon with me while friends and family tried to warn us that we were being emotionally driven by what we wanted to believe instead of inspiration from God---but even through their frequent warnings, they were quick to admit how much they hoped we were right---how much they desired for Hopey to be spared of the struggle she would surely face at birth and throughout her life. Chappy's faith, in fact, proved much stronger than mine. On the day of Hope's delivery, when my own life came into danger as my blood pressure plummeted and nearly bottomed out, and in the midst of the drama that ensued as the doctors worked feverishly to save both Hope and me, I questioned everything. I even questioned whether God was fact or fiction. And for 18 months following, I continued to question.
***
Looking back with hindsight, I can now see God's plan in it all. He had so many lessons to teach me through the high risk pregnancy, through Hope's frightening birth, through the "Name It And Claim It" journey, through my many doubts....but mostly through my little angel who is completely imperfect by the world's standards, but who couldn't be more perfect for me and for Chappy. No opportunity is wasted with God; each moment, especially those that are tough, equates to a teachable moment when we are open to learn.
***
On Saturday, I will frequently think of the "May 21st Judgment Dayers" and hope against hope they are correct. Alas, I do not believe in the rapture, but I do firmly believe the Lord is returning soon to set up His Kingdom on earth....and I can hardly wait for that day to come. Oh, the celebration at hearing those trumpets sound and finally seeing His wonderful face!
***
If we awake on May 22nd, however, to find an earthquake did not shake the earth and fire did not come from the sun in the form of a great solar storm, my thoughts will again turn to the "May 21st Judgment Dayers". Their hearts will be broken and they will question their belief in God with a mix of anger, rejection, and bewilderment. My prayer on the days that follow will be for those precious brothers and sisters to learn more about themselves and about God through the experience....that what satan intends for harm, God will use for good.
***
Oswald Chambers sums this up perfectly:
***
"He said to me, 'Son of man, can these bones live?' " (Ezekiel 37:3)
***
"Can a sinner be turned into a saint? Can a twisted life be made right? There is only one appropriate answer---"Oh Lord God, You know" (Ezekiel 37:3). Never forge ahead with your religious common sense and say, "Oh, yes, with just a little more Bible reading, devotional time, and prayer, I see how it can be done."
***
"It is much easier to do something than to trust in God; we see the activity and mistake panic for inspiration. That is why we see so few fellow workers with God, yet so many people working for God. We would much rather work for God than believe in Him. Do I really believe that God will do in me what I cannot do? The degree of hopelessness I have for others comes from never realizing that God has done anything for me. Is my own personal experience such a wonderful realization of God's power and might that I can never have a sense of hopelessness for anyone else I see? Has any spiritual work been accomplished in me at all? The degree of panic activity in my life is equal to the degree of my lack of personal spiritual experience."
***
"Behold, O My people, I will open your graves...." (Ezekiel 37:12) When God wants to show you what human nature is like separated from Himself, He shows it to you in yourself. If the Spirit of God has ever given you a vision of what you are apart from the grace of God (and He will only do this when His Spirit is at work in you), then you know that in reality there is no criminal half as bad as you yourself could be without His grace. My "grave" has been opened by God and "I know that in me (that is, in my flesh) nothing good dwells" (Romans 7:18). God's Spirit continually reveals to His children what human nature is like apart from His grace."
***
May LOVE abound as we consider our own frailties....and may the Lord return quickly!
***

Life X 1000

Have you ever been left off the invite list of a popular social gathering because of your special needs children? ***

Do you know what it is like to be stared at when your disabled child screams with stiffened arms and legs for ten minutes in a restaurant?
***
Have you ever listened to a passerby in Target exclaim loud enough for you to hear: "That child just needs a good spanking!" while your child is banging her head against the buggy and crying her eyes out?
***
Welcome to our world. And the little mischief maker in the picture above is the culprit. Ha! Ha!
***
Hopey is such a complex bundle of so many different things. On top of three open heart surgeries that have left her with an unpredictable and inoperable aneurysm in her heart, she can't see worth a darn and refuses to wear her glasses most all of the time, she is non-verbal in the human realm though seems to speak in tongues occasionally with the unseen angelic realm, her pigeon-toed feet produce frequent stumbles resulting in little purple bruises that decorate her tiny shins, and she has sensory integration issues causing unpredictable meltdowns lasting anywhere from five minutes to fifteen that can include throwing things, pulling the hair of whoever is nearest, or curling up into a fetal position in hope of escape.
***
I guess after completing the above list, I can sort of understand why we are no longer on the party circuit list (at least where family gatherings are concerned). Now, for a moment, imagine you are Hopey. Yeh, that's right, for a brief few seconds, put yourself into her little nicked up stride rite tennis shoes. Can you feel it? Can you sense what it must be like to be overwhelmed by your surroundings to a point where you feel you must either lash out in despair or do your best to hide from it all?
***
I was discussing all of this with Charlie's speech/feeding therapist this week when she suddenly jumped from the table and began to rummage through a drawer. Within seconds she stuffed a booklet in front of me and said: "You have to read this!" Here is what it said:
***


"This letter is written to all the friends, extended families, and neighbors of parents who have a child with Sensory Integration issues (SI). I have one piece of advice for you. The next time that you are tempted to comment or offer advice on their response to that child---DON'T!!! You see, unless you are an SI parent, or have lived with an SI child, or perhaps studied Sensory Integration Disorder exclusively for several years, there is no way you can fully understand what is happening in any given situation.
***


For an SI child, it is living LIFE X 1000. Every single sensation that they experience is multiplied over and over. It is walking out into a bright sunshiny day and being blinded by the light; not just for an instant, but for the entire time you are outside. Not just once in a while, but every time you go outside. Every day. All the time.

***

It is hearing a sound, any sound, all sound, and every sound like it was a boom box on your shoulder that is turned to BLAST volume. Every day. All the time.
***


It is constantly being aware of every piece of clothing that touches your body. Did you ever have a pair of pantyhose or a necktie that drove you crazy? You just couldn't wait to get it off. That is somewhat how an SI kid feels all the time. Most would gladly live in the nude.
***
Temperatures are extremes, smells are extremes, and some SI problems cannot be fixed. The best you can do is teach a child to respond to life and its sensations in a less that "X 1000" response. SI kids can and will dissolve into tears in an instant, or screaming meltdowns at what appears on the surface to be the slightest provocation. They can also sense the feelings of those around them and have an uncanny sense of feeling another person's sorrow. They can feel when they are being judged or rejected, when not a word has been said.
***
It is a long uphill battle for parents of SI kids. First they must learn to experience life and the world as their child does. Then they must teach their child to respond to it in a way that is "socially acceptable" and a way that does not harm their child in the process. This is not easy and these kids do not come with an instruction manual.
***
It is easy to spot an SI parent, however. They have a haggard look and their eyes often fill with tears. Tears of exhaustion, frustration, self-doubt, and fear.....but most of all, tears of amazing love for this amazing child God has given them.
***
So next time you are tempted to offer advice or criticize----JUST DON'T! Instead, give them a hug and offer a prayer for them. Pray for endurance, energy, understanding love and a training manual."
***
(the above letter was written by a grandmother of an SI child)
***
Can any of you relate??? Whew. Now throw Hopey's "non-verbal" on top of the SI issues, and our life looks eerily similar to a train wreck at times. As a family, we are left to look into Hopey's big ole eyes as she is melting.....and when we detect "fear" in those eyes, which is often the case when we transition from one public place to another, we hold her tight, speak assurance into her sweet little ears, and ignore all of the stares from onlookers until she works through it. In time, we have been told she will learn to manage it all, but right now, she is still a beautifully raw and honest five year old work in progress.
***
It is funny how a lesson can be learned by everyone in everything when our hearts are in tune to the Lord....you see, Hope isn't the only one being "taught" on this SI journey. Through this experience with Hopey, God is teaching our family a tremendous (and difficult) lesson in perserverance and patience. While it would be easier to never take our little angel out into public, without shaking up her routine with different sights, sounds, tastes, smells, and textures....she would never learn to cope. As a result, each time we gather her up in the van to take a trip to the grocery, to Target, or to a restaurant....we know what we are headed for....and we know the odds most often stack up in favor of a meltdown. But we go. We perservere. We push forward for Hope's sake.
***
Perhaps the biggest lesson has come as I have watched our older children deal with Hopey. To see our sixteen year old son and two twelve year old daughters rush to rescue Hopey during her meltdowns without considering the judgment of peers who often surround them in public places, is a constant reminder of their pure love and outrageous compassion for the little sister many would consider broken and disregardable....truly, their love for her outweighs every other consideration in their lives. "Don't you get tired of that?", one friend might ask after watching Caleb, Lydia, or Natalie's hair being pulled during a meltdown. Ears sharp, but without looking their way, I have heard each of them say more than once: "Are you kidding? I love her!"...and their love for Hope is a constant reminder of God's love for me (and for you).
***
How many meltdowns do we have as we bow up and refuse God's way in order to choose our own? How many times do we miss His love because of all of the distractions around us? Sometimes we lash out and sometimes we want to curl up and hide. Others even taunt our faith by asking: "Don't you get tired of that?" But God doesn't give up. His love reaches beyond what we can grasp---and eventually, we come around and see clearly that we can trust Him in the midst of the storms of our lives. The storms never go away, just like Hopey's SI will never completely go away...... as Hope learns through experience to trust her family in every situation..... we, too, learn to trust our Father. Perserverance is the key that opens the door of Love.
***
When God brought Hopey into our midst, He brought a training stick in the form of a little girl with an extra chromosome who lives "Life X 1000"!

Happy Mother's Day!

To all the moms who have been chosen to love and care for a "special one"...be blessed this day with the poignant words of Erma Bombeck:

"Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger:

'Armstrong, Beth....a son....Patron Saint, Matthew.'

'Forrester, Marjorie....a daughter....Patron Saint, Cecilia.'

'Rutledge, Carrie....twins....Patron Saint....give her Gerard, because he's used to profanity.'

Finally, He passes a name to an angel and smiles: 'Give her a handicapped child.'

The angel is curious: 'Why this one, God? She is so happy.'

'Exactly', smiles God, 'Could I give a handicapped child a mother who does not know laughter? That would be cruel.'

'But has she patience?', asks the angel.

'I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it. I watched her today. She has that feeling of self and independence. She will have to teach the child to live in her world and that is not going to be easy.'

'But Lord, I don't think she even believes in You.'

God smiles: 'No matter, I can fix that. This one is perfect. She has just enough selfishness.'

The angel gasps, 'Selfishness? Is that a virtue?'

God nods. 'If she can't separate herself from the child occasionally, she will never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will never consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creation.'

'I will permit her to see clearly the things I see----ignorance, cruelty, prejudice----and allow her to rise above them. She will never be alone. I will be by her side every minute of every day of her life because she is doing my work as surely as she is here by my side.'

'And what about her Patron Saint?' asks the angel, his pen poised in mid-air.

God smiles. 'A mirror will suffice.'

Fetal Alcohol and a friend called "Betsy Brown"

If you have been following my blog for very long, you have likely realized I use my blog more as a way to journal my own inner struggles and quests for truth than to report "on the life of". A wife of a successful business man and mother to five incredible children, three who have special needs, my life is a constant balancing act. Most of my time is spent trying to be everything to everyone. And sometimes I fail.

Natalie, now twelve, was adopted at age three from Russia and has Fetal Alcohol Syndrome. I homeschooled her (along with the rest of the gang) until she entered the public school system last year when I noticed she wasn't processing information the way her fifth grade curriculum required. After a few tests within the special education department, it was noted she could use some "extra help". Unfortunately, being plucked from Natalie's "safe" environment at home to be placed into a situation that allows for the constant scrutinization by fellow peers did not settle well with the effects of Fetal Alcohol Syndrome (FAS). In her valiant effort to prove her worthiness as a public school student, Natalie fell short. Being one of the only fifth grade girls in her class who did not own a cell phone, maintain a facebook account, wear the latest fashions, sport blush with the occasional eyeliner, and have a boyfriend did not make her the most popular. Teem those things with the fact that people born with FAS tend to be missing the extra sensibility called "tact", and you have a disaster. Basically, Natalie felt it was her obligation to let everyone in her class know why she didn't need a cell phone at age twelve, why she didn't need boyfriends...and why they didn't either....and so on. Get the picture? No tact = no popularity.

Having grown up in the public school system, I understand a thing or two about behavior (as most of you can probably relate). Basically, kids can be cruel. In response to Natalie's lack of "tact", she was shunned. Completely. And she didn't like it. After some time passed, unbeknownst to me (because of course, Natalie didn't even realize why she was being shunned), Natalie began to figure out that she could fit in and be accepted if she acted like everyone else and looked like everyone else. To make a long story short, she ended up stealing things from other students. If she thought make-up would make her more popular, she would steal make-up from a peer's backpack and wear it at school (removing it before coming home)....if she thought wearing silly bands would make her popular, she would steal silly bands and wear them at school (removing them before coming home). Having three special needs children in your home will make you more in tune with life than you ever thought you could be...trust me. So, when I started noticing the slightest change in Natalie's walk, demeanor, looks, etc., I began investigating. She was busted. I found her hidden stash in her bedroom.

To remedy, I went to the principle and asked him to give her in-school suspension in hope fear would over-rule the temptation to "fit in". After the second and third offense, however, I realized the temptation was just too much for Natalie. Since FAS and OCD tend to go hand in hand more often than not, I did not want to risk the act of stealing becoming an obcession with Natalie. I moved her back home to be homeschooled. That was in February.

Before I get to the rest of the story, I think it is important to remind you that FAS impacts the way Natalie communicates. She truly processes all information differently than one who does not have FAS. I spend an inordinate amount of time trying to decipher and decode Natalie's sentences and thought patterns...for instance:

One day Natalie was creating sentences from a spelling word list for school. One of the words was verdant. Natalie's sentence read: My family is verdant. She received a huge red "x" for her sentence with a note from her teacher stating that she had obviously not looked up the word before attempting to write her sentences. Natalie was terribly upset by the red "x" across her paper and pleaded with me to read her sentence and decide for myself if she was indeed wrong while attempting to persuade me that she had looked up the definition before writing the sentence. I took her paper in hand and said: "Ok, then, tell me the definition of verdant." She replied: "Green". "We're green, Natalie?", I asked. "Yes!", she nearly screamed. I took myself out of my own head (figuratively) and put Natalie's head upon my shoulders for a moment when the proverbial light bulb went off. As it turned out, Natalie's sentence was very appropriate since our family is big into recycling, conserving energy, and eating organic....we are a "green" family indeed. Ha! Ha!


This is one of about two-million "Natalie-isms". Dissecting the meaning of her thought patterns is a constant job, and staying on top of the process can be exhausting. At times, I am not on my game...this is when disaster knocks. And it knocked a couple of weeks ago in a tremendous way!

It was Wednesday, and I left the house at 12:15 to retrieve Hopey from preschool while leaving Caleb, Natalie, and Charlie at home. (Caleb gets out of school early on Monday, Wednesday, and Friday). When I returned, Caleb was frantic and Natalie was in a state of panic. They were both speaking at the same time about the explosion in my bathroom. With Hope in my arms, now shrieking as she sensed the fear in her brother and sister, I tried to get both to calm down and let me know what happened. Caleb kept saying: "Natalie has done something, but she won't admit it!" while Natalie was simultaneously crying out: "I swear, mom, I didn't do anything!" (Swearing is another one of those things I will blame on Nat's stint in the public school---lying, though, she learned on her own).

After calming Hopey down, I left her safely with Caleb while I set out to assess the damage in my bath. My stomach was in butterflies and my hands were shaking...remember, they described it as an "explosion". When I entered the bathroom, I could see nothing but fog...lots of fog. And a smell in my bathroom choked me. I stormed out of the bathroom, slammed the door behind me and demanded Natalie tell me what she had done. Her response: "I swear to you mom, I found it like that. I didn't do anything!"

For all of you who have children with FAS, you will understand what I went through in the next thirty minutes while trying to pry the truth from Natalie...for those of you who do not have a child with FAS, there is no way on earth you could ever understand. Once a child with FAS has lied, he/she will go to the mat to make up lie after lie after lie to cover up the original lie until it is such a bundled up mess you just want to throw it away and forget it ever happened...but I couldn't, because I had a very thick fog hanging in my bathroom.

Finally, I said: "Natalie, I know you did something, because fog doesn't just appear out of no where. There is a reason you are not telling me the truth, but I have to get Hope and Charlie out of this house just in case you have done something that can be dangerous to them." Then I looked toward Caleb and said: "Caleb, let's get these little ones out of here!" Natalie, who was still on her knees from begging me to believe she was telling me the truth, quickly stood and wiped the tears from her eyes, ready and eager to leave with us. Quite deliberately, I turned to Nat and said: "Oh, no, you aren't going with us. Since you are not telling me the truth about this situation, you will have to stay here and deal with it the best you can. Good luck!" And with that, I turned toward the door.

And as we say in the South: "with two shakes of a sheep's tail" that little girl starting spilling the truth. Just as I suspected, Natalie Grace Hollis was not prepared to go down in the fog-ridden house alone. Ok, I can chuckle about it now, but two weeks ago I was mad enough to bite a nail in half with one chomp.

As it turned out, while I was retrieving Hopey from preschool, Natalie was meddling in my bureau drawers. She happened upon some pepper spray that I had when I was in college (I don't even want to share how many years ago that has been), and it had been long forgotten. In her state of curiosity, Natalie had taken the pepper spray and sprayed it all over my bathroom, not knowing what it was. Soon, she began to choke and realized she had done something very wrong that needed to be covered up....with every chemical cleaner she could find in my house. The result? A chemical reaction of fog and a smell I hope to one day forget.

I did not speak to Natalie for three whole days after this event. I was too angry and certain I might say something I would regret if I did try to talk to her. All I could think of was her stealing at school and how she was now trying to steal from her own mother. Why else would she be rifling through my drawers as soon as I left the house? Oh, I brooded.

On the following Sunday, Chappy took Caleb and Lydia golfing. I was left in the house with Natalie, Hope and Charlie trying to figure out how to best deal with my hurt feelings toward my twelve year old daughter. Like I stated before, because of FAS, communication with Natalie is difficult, but I knew I had to try to talk to her and find out "why". I called her into the great room and began:

"Natalie, I am sure you have noticed I have been avoiding you the last few days. I want you to know I am furious at you for what you did, but mostly because you lied to me. Daddy is going to be gone with Caleb and Lydia for two hours or more, so I am going to give you time to explain to me why you did what you did, and I am going to be quiet and just listen to you. I know you have a hard time formulating your thoughts, so try really hard to take this step by step and explain to me what happened."

Her response, just as she told it to me:

"Mom, I lied to you because I knew you would be so mad at me for what I did. I didn't mean to make a big mess and didn't know what that spray stuff was. I went to your room to look for my adoption papers because I think you are telling me a lie about my birth mom. Do you remember when we watched "August Rush" with Gigi and Poppy? Well I started thinking Elena (her birth mom) might have really wanted me but she thinks I am dead and you and dad stole me. When I went through your drawers I found that spray and knew I shouldn't spray it, but I couldn't help it. Something inside of me just had to know what it was. I told my hands not to grab it but they did anyway. When I sprayed it, the smell was so bad I had to cover it up. The next thing I know I was choking and there was smoke everywhere. And that is the truth. I am sorry I did all of that and lied to you."

My turn:

"Natalie, do you really think I am lying to you about your birth mom?"

Natalie:

"I'm not sure and it bothers me alot."

My turn:

"Are you going to keep going through my stuff until you find those adoption papers?"

Natalie:

"I know I'm not supposed to, but I probably will anyway, because I can't help it. I think about it all of the time."

So, Natalie and I spent the remaining two hours going through her adoption paperwork line by line. I showed her everything...I even had her read the papers out loud to me to make sure she understood every single horrible word. And she cried. And I cried.

Natalie cried because of the rejection she felt from her birth momma's statements in the adoption paperwork while I cried because I wished her adoption story wasn't so ugly.

Natalie cried because she was happy I wasn't mad at her anymore while I cried because I hadn't taken the time to get past my own anger enough to get to the bottom of the "bathroom fog saga" sooner. Three days was too long for anger to separate us, and the realization hit me like a ton of bricks.

Natalie cried because she has Fetal Alcohol Syndrome because of a teenage mother who was a homeless alcoholic and drug addict....while I cried because Fetal Alcohol steals so much from Natalie. It makes her compulsive enough to spray pepper spray all over my bathroom and impulsive enough to try to cover it up with all kinds of chemicals....it takes the edge off of her comprehension of the severity of telling lies....and then the final bite, probably worst of all, it hinders her ability to communicate. Natalie lacked the necessary skills to come to me and make things right, so she had to wait in misery until I came to her and gave her uninterrupted time to try formulate her thoughts to express her side of the story.

This was a huge lesson learned for both Natalie and myself. Yes, I failed as a momma for a few days while I stewed in my anger....but I learned so much about Natalie. And my heart grew for her.

What does Betsy Brown have to do with all of this??? On Thursday evening, our family stopped to get a bite to eat in Alabaster, Alabama on the way to Florida for a long Easter weekend. Upon leaving the restaurant, Chappy with Charlie in his arms, sent Natalie back to tell me to watch my step when coming out to the car because there was a big step off of the curb and he was afraid I might fall when carrying Hopey out to the car with me. (I had stayed in the restaurant a bit longer to let Hopey finish drinking her water while Chappy left to pack Charlie into the car seat). A woman in the parking lot overheard Chappy use Hope's name and said: "I think I follow your wife's blog...is that little Charlie you are holding?" By the time I came out to the van with Hopey, Chappy introduced me to Betsy Brown who could call each of our children by name. We had such a great time meeting Betsy, who is a tremendous prayer warrior. Hope literally jumped into her arms and gave her huge hugs and many excited smiles. Their spirits connected supernaturally.

God used Betsy Brown to remind me why I keep this blog going....we all need each other. Perhaps the struggle I shared today will help someone else in another city deal with a similar journey....and maybe I will meet another Betsy Brown who will happily inform me of her prayers for our little Hopey's heart. We serve a God who is so great it is unfathomable, but at the same time, He takes the time to be involved in the minute details of our lives. Truly, He blows me away.

So today Father, and every single day, I trust you with Natalie's Fetal Alcohol Syndrome...with Hope and Charlie's Down syndrome....with Hopey's heart defect, with my energetic teenager (Caleb), with my drama-queen (Lydia) and with the love of my life (Chappy)....but most of all I trust you to teach me through my many failures. Thank you for your never-ending mercy!