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!
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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?
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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?
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Welcome to our world. And the little mischief maker in the picture above is the culprit. Ha! Ha!
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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.
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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?
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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:
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"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.
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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.

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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.
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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.
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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.
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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.
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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.
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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."
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(the above letter was written by a grandmother of an SI child)
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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.
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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.
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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).
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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.
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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.'