Thursday, May 26, 2011

"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)

Thursday, May 19, 2011

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.
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Oswald Chambers sums this up perfectly:
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"He said to me, 'Son of man, can these bones live?' " (Ezekiel 37:3)
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"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!
***

Friday, May 13, 2011

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!
***
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"!

















Wednesday, May 4, 2011

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.'