LITTLE GIRL INTERRUPTED By Lolly Bentch Myers

LITTLE GIRL INTERRUPTED

Someday I’ll be done asking how this happened. Someday I’ll be done asking, “why Anna?”. Someday I’ll finally warm up to the idea that bad things happen to good people. Not today though. Today I’m just pissed off. I’m pissed off that there is absolutely no explanation as to why my daughter’s left temporal lobe has atrophied... why does she have cavernomas in her brain? why is she autistic? I just want to know why my perfectly perfect little girl forgot everything she knew as a toddler.

Anna was the funniest little girl i’d ever met. i know everyone thinks their kid is the funniest kid they’ve ever met but I’m telling you, this kid was a comic genius. She was really bright. One day she brought me a photo album and said, “Hey mom, I got a face book”. So sweet, so imaginative, so ridiculously cute I could have just watched her all day. But then on the day of her second birthday, something took that delightful little girl away from me. In exchange, I got an angry, sad little 2 year old. Still cute, but damn miserable.

Even more devastating than the fact that her emotions were completely out of control, was the fact that she couldn’t remember some of her favorite songs. She no longer seemed to be comfortable with family members. It was sort of like she didn’t know them anymore. She stopped counting. She stopped saying her abc’s. She forgot who she was. She was interrupted.

In place of her usual hobbies, she became obsessed with puzzles. She was suddenly fiercely independent and would spend hours assembling the pieces, taking them apart, and reassembling. She would insist on only wearing pajamas with buttons. She would throw a massive temper tantrum if she got so much as a drop of water on her clothing. As if the tantrum weren’t irritating enough, she’d then strip naked and insist on different clothes. She no longer went to sleep at night. She’d stay up until 3 or 4 crying, screaming really. Some nights the only thing that would calm her was to give her a comb and lie down with her so she could run it through my hair over, and over, and over.

Somewhere after that, I began to notice strange “muscle spasms”. At least that’s what I thought they were. When I’d mention them to doctors and family members, no one seemed terribly concerned. She was diagnosed with pervasive developmental disorder-not otherwise specified. along with pdd-nos, she was also diagnosed with anxiety disorder. Anna didn’t really talk much anymore so it wasn’t until She began being vocal again that I noticed these spasms were interfering with her thought process. something more was going on. She’d come into the room where I was and say, “Mommy, I need you to...” (head goes down, arms go up, a small stumble backwards, head back up, arms go down, a smile in my direction). Then she’d walk away. I’d say, “need me to what, anna? Anna, what do you need?” nothing. She didn’t remember. She was interrupted.

I still didn’t realize she was having seizures. i thought when someone had a seizure, they would drop to the floor and convulse violently for a few minutes. when her psychiatrist caught one of these episodes out of the corner of his eye, he knew immediately what was happening. He set up an appointment for her at Hershey medical center. we were there the next day. she had an mri and eeg which showed atrophy, cavernomas, and seizures with a slow spike wave between.

Since then, Anna has had more eeg’s, more mri’s, 2nd opinions, 3rd opinions, 4th opinions. She’s been on 6 anticonvulsants, 2 extreme epilepsy diets, and several other prescription drugs that are intended to lessen her anxiety and help her fall asleep. Since stopping the Ketogenic diet 4 months ago, she has gained 9lb’s. if you don’t know what 9 lb’s looks like on a 5 year old, imagine a very small person with breasts and cellulite who wears size 8 pants that have to be rolled at the bottom to make them about 10 inches shorter. This is what happens when you put small people on metabolism-altering diets. I suppose i wouldn’t be so irritated about the effects of this had the diet helped even a little. but hey, these are the treatments that we have to pick from in pennsylvania. Tough break, Anna. you were born in the wrong state.

Or maybe, just maybe, she was born in just the right place. And god allowed her to become sick knowing that i’m a strong enough woman to fight this good fight. just strong enough to continuously be told not to bother trying, but to continue to try anyway. hmmm... maybe that’s the answer to all my “why’s”. maybe it’s time to take the anger i feel about all the unanswered questions, and redirect it to the unsympathetic people who are denying my little girl the cannabis medicine she needs to continue in life without being interrupted.

Please Try on These Shoes...Our Families' Shoes

How Would You Feel?

For me, it all started in July of 2011 following a family vacation to the beach. On our return home my daughter Lolly told me that she was going to begin having my not quite 4 year-old granddaughter Anna tested for Autism.

My first reaction was shock and disbelief. After all, this child was beautiful, charming, funny and adorable-strange as the day is long, but amazing none-the-less. It did start to make a little more sense once I climbed out of my "grandma box." (After all, how many 18 month old children methodically peel wall paper for hours at a time, but she soothed herself with the most delightful little songs as she worked!  We jokingly referred to her obsession as "Anna's day job.")

PDDNOS (Pervasive Development Disorder Not Otherwise Specified) was the first clinical diagnosis...that put her somewhere on the mystical "Autism Spectrum." But, the testing hadn't been going on long before other symptoms, far more disturbing symptoms, began to rear their ugly heads! Soon after her first diagnosis, her "tics" (odd little movements) were actually witnessed by a neurologist who assured us that the tics were, in fact, seizures (So we added Epilepsy to the growing list of diagnoses). 

After a MRI and EEG we were informed that Anna's left temporal lobe was atrophied or not fully developed (I'm still not quite sure which neurologist’s opinion is correct!) As you can imagine every diagnosis got a little more frightening. Then the words "mild mental retardation" stunned this grandma.

But we are a family with a strong faith and we are determined to trust the LORD.

Over the next several months Anna was seen at three hospitals (Johns Hopkins, Hershey Medical Center and Pittsburgh Children's Hospital). She has had different diagnosis and opinions from three neurologists and she has been subjected to at least 10 different medications with a wide range of ominous side effects. At one point, when I was in tears and barely holding it together, I told  Lolly, "Please don't tell me any more side effects.”

Anna has also suffered through two diet regimes; Modified Adkins and the Ketogenic diet, both aimed at stopping her seizures. With MA she was allowed no more than 10 grams of carbohydrates a day and KD was very high fat with even less carbs.  I don't know how Lolly and Anna got through that one, but I will never forget the day we cheated and gave her 4 strawberries and a hand full of French fries and caught a glimpse of our Anna once again! Energy and spunk can be utterly delightful in a 5 year old who has become withdrawn and moody. (At one point my daughter, The Trooper, was told by Anna's dietitian not to leave bowls of dog or cat food anywhere that Anna could find it. And who could blame Anna for hiding behind the couch when her 3 year old sister delivered a clandestine Starburst? And we can’t forget having to hold both of her hands in the hospital when she must have thought she was starving to death and tried to eat the purple sparkly nail polish off her nails...No wonder she called it “DOCTOR JAIL!”)

However, despite the plethora of medications, Anna continues to have between 60-80 seizures a day and has to have a caregiver in her kindergarten class to keep her safe. I have seen her crack her head against marble table tops, the dinner table, shopping cart bars and the Ipad. She also has to have medication just to sleep through the night.

What Would You Think...   

• If Anna was YOUR daughter or YOUR Granddaughter and NOTHING seems to be working?
• And if there were actually discussions about removing her left temporal lobe...and then maybe even removing her frontal lobe while they're at it? (One quarter of her brain!)
• What would you be thinking and feeling? 

What Would You Do?

Then imagine, watching a CNN broadcast by a doctor telling about a family of six brothers living in Colorado who have developed a strain of a medicinal plant that is extremely low in a chemical called THC and extremely high in a chemical called CBD. As well, a process has  been developed to cook or steam the plant in a way which results in an oil based CBD compound or extract that can be given to children in a dropper or added to food.

The CBD has been successfully used to treat children with autism, epilepsy, Crohns Disease, PTSD, cancer, cerebral palsy, muscular dystrophy, asthma, migraines, Tourette's Syndrome, Diabetes, OCD, stuttering, Bell's palsy and much more. 

Upon further investigation you discover that there is a wealth of information available on all the tests and research and treatments being done in the United States and Israel with astounding results. There are any number of videos online that show children before and after CBD has been administered and HOPE begins to rise in your spirit. Imagine!

BUT, there is a problem. A serious problem. 

The plant is marijuana and in most states, including Pennsylvania, it is illegal...

• Even for medicinal purposes
• Even if it might be the difference between life and death
• Even if it might mean the difference between a whole brain and 3/4s of a brain
• Even if the side effects are nearly non-existent-especially when compared to the prescription drugs that are not working!
• Even though CBD does not make a child “high,” but instead it calms their brain.                           (It is the THC that causes people to be “stoned.”)

To What Lengths Would You Go?

Unfortunately...

• There are far too many people, like me, who in our ignorance have abhorred the thought of "legalizing pot" even for medicinal purposes.
• There are too many people who have never heard the truth and make false assumptions.
• There are too many politicians who just don't understand the process or the purpose!      
• Unfortunately, medicinal cannabis is probably a great threat to drug companies and those who profit from them.                                                                                                                                 

  But for my family and for Anna, "ignorance is not bliss" it is life threatening!

So I have been pondering this situation for weeks now... 

What does this mean for my family; for Anna's mom and dad, for her brother and sister, for me and the rest of my family? The nature of our dilemma puts us in a troubling spot on many levels.

I am asking myself serious and hard questions with these very real facts in mind...

• I am a pastor.
• I am a conservative pastor in a conservative denomination.
• I am a conservative pastor who is employed at a conservative retirement community.  

But first and foremost, I am a mother and a grandmother and I have gone to extreme lengths to protect, support and raise my five children and equally support them in their marriages and with their own children. 

What will it cost me to support a change in our laws, one with such steep opposition and a formidable battlefield? 

And I have discovered this, the bottom line for me...

What won't I do to make sure Anna has every possible chance for health and wellness? 

That is the question and the answer becomes clear and undeniable.

Will you Please Try On These Shoes and walk this road with us and not against us. 

For the Children's Sake? For Anna's Sake?

"We have always believed that God would heal Anna. We still do. 

At first we thought He would heal her through man-made medicine.

Then we thought maybe He would heal her through the hands of a surgeon.

Now we believe He will heal her through the seed-bearing plants He has provided us."

Pediatric Cannibis.

Will you help give us HOPE for ANNA?

     

RECIPROCITY

RECIPROCITY - a relation of mutual dependence or action or influence

For several years now, at some point during the year, a "theme" has taken shape in my life. For instance, one year the theme was, "Who Am I and What Do I Know?" (A good reminder that "it's not about me" and that, apart from Christ, I have nothing worth offering of any eternal significance.) And from that theme a new one was was easily born, "Apart from YOU, LORD, I can do nothing!" Another year my theme became, "If the LORD so wills it…" Each theme had a deep personal meaning and left a lasting impression.

Then, last year, I was given the word "RADICAL" (a whole year ahead of time) for the theme at Roxbury Holiness Camp, where I had been asked to give two morning messages. RADICAL became "the word of the year" as I was hyper-vigilent to anything and everything to do with RADICAL and as I quietly waited for the Holy Spirit to reveal the direction my two messages would take.

Well, once the two sermons had been delivered and I was on my way home, I considered the fact that I could now let "RADICAL" rest, but I quickly realized that might not ever again be possible. RADICAL is indelibly written on my heart and mind and I am determined to become, in every way, a RADICAL Woman of God. I'm not sure I can, or want to be, satisfied with anything less.

So, fast forward a month and I am asking the LORD to give me a new word just the same. Again, I wait patiently, knowing that it will be revealed in His time and not my own. And sure enough, this morning as I walked through the halls of Messiah Village I greeted a professional with my customary smile and super-sized "Good Morning! How are you?" And I was rewarded with nothing more than a cursory and almost curt, "Fine," as she went on about her business. Immediately a word came to mind... "RECIPROCITY." (How do I know it was from the LORD, you might wonder. Well, I knew it when my first question was, "LORD, couldn't You at least have given me a word I can pronounce?")

I have no idea where this journey will take me, but within the first couple of hours I was recognizing instances of genuine RECIPROCITY and I have certainly been reflecting on the significance of the word this evening with many questions. Surely I experienced some of the opposite, as well, and there will be just as much, if not more, to learn from that. I think I might just become RADICALLY excited about RECIPROCITY! 

Okay, I Confess...

I love this quote by Henri Nouwen. 
It is so true. 
So real. 
And certainly worth taking to heart in every way.

"In a world that asks us to make up our minds about other people, a nonjudgmental presence seems nearly impossible. But it is one of the most beautiful fruits of a deep spiritual life and will be easily recognized constantly by those who long for reconciliation." Henri Nouwen 

Having a judgmental attitude about others is something that I have been very conscious of in my own life. 
I don't want to be one who is quick to judge...especially when I don't know all there is to know about a person or a situation. 
When it is necessary to judge, I want to use the same ruler that I would choose to be judged with. 

I want my judgments to be fair and accurate and certainly Biblical and Christlike...which brings me to issue that I have been pondering in my own life. 
I confess. I repent. 
I will change my attitude and behavior. I must!

You might be surprised to learn "the issue" at the core of my confession. 
It isn't blatant sin as you might imagine... I'm perfectly content to leave that judgment to God. 
You probably won't find a scriptural basis for it. (I can't anyway.)
BUT IT BUGS ME TO THE CORE!

You see, I am quick to judge people who do not appear to be friendly.

• The ones who walk toward you down a hall and look at the wall rather than at you.
• Those who only speak if you force them to by speaking to them and waiting for a response.
• And then they respond with little more than a grunt.
• The ones who seem to have no smiles within them.

And what is with the grumpy one who demands without a "please" or a "thank you." And has nothing kind to say about anything or anyone.

Here's the heart of the issue for me and it is what I'm coming to grips with... I have expectations. 
And, when my expectations aren't met I have a propensity to judge! 

• I expect friendliness.
• I expect a smile and a friendly greeting.
• I expect to be looked in the eye.
• I expect consistency... I don't want to wonder from one day to the next if you are going to smile and be friendly or growl and look somewhere else! 
• I expect people to use their manners and be polite and show respect for all. 

Good Grief! Whose world do I think I am living in? 
                     (My children refer to it as "Debbyland.")

So, just because....
I rarely, if ever, do grumpy.
I don't raise my voice in anger. Ever.
I don't take out my frustration on anyone else. 
I am not temperamental. 
I certainly need to remember that my rush to judge those who don't meet MY EXPECTATIONS is certainly as much a sin as any other! 
All my "goodness" is as filthy rags if I am meeting others with harsh judgment! LORD, forgive me!

Rather than walking away from that demanding, grumpy man I should have served him just like I would have served Jesus.

Instead of telling my daughter, "I'm not impressed!" when she introduced me to a well-known Pennsylvania political commentator and he brushed me off... Well, it's not his job to impress me, is it?

And haven't I pretty much "brushed off" my not so friendly new neighbor, rather than trying to win her with kindness? 
And, regardless of how others treat me, well, I know I'm responsible for my behavior-NOT ANYONE else's. Obviously, the only one I have any right to expect anything from is myself. 

So, I confess and I repent and I determine to release others from my expectations.
And I will be all about that "beautiful fruits of a deep spiritual life!"                   So help me GOD!

RADICAL

The Tiger's Whisker (A Korean Fable)

Someone shared this story with me a few months ago. It contains subtle, but powerful truths...enjoy!

ONCE UPON A TIME a young wife named Yun Ok was at her wit's end. Her husband had always been a tender and loving soulmate before he had left for the wars, but ever since he returned home he was cross, angry, and unpredictable. She was almost afraid to live with her own husband. Only in glancing moments did she catch a shadow of the husband she used to know and love.

When one ailment or another bothered people in her village, they would often rush for a cure to a hermit who lived deep in the mountains. Not Yun Ok. She always prided herself that she could heal her own troubles. But this time was different. She was desperate.

As Yun Ok approached the hermit's hut, she saw the door was open. The old man said without turning around, "I hear you. What's your problem?"

She explained the situation. His back still to her, he said, "Ah yes, it's often that way when soldiers return from the war. What do you expect me to do about it?"

"Make me a potion!" cried the young wife. "Or an amulet, a drink, whatever it takes to get my husband back the way he used to be."

The old man turned around. "Young woman, your request doesn't exactly fall into the same category as a broken bone or ear infection." 

"I know," said she.

"It will take three days before I can even look into it. Come back then."

Three days later, Yun Ok returned to the hermit's hut. "Yun Ok," he greeted her with a smile, "I have good news. There is a potion that will restore your husband to the way he used to be, but you should know that it requires an unusual ingredient. You must bring me a whisker from a live tiger." 

"What?" she gasped. "Such a thing is impossible!" 

"I cannot make the potion without it!" he shouted, startling her. He turned his back. "There is nothing more to say. As you can see, I'm very busy."

That night Yun Ok tossed and turned. How could she get a whisker from a live tiger?

The next day before dawn, she crept out of the house with a bowl of rice covered with meat sauce. She went to a cave on the mountainside where a tiger was known to live. She clicked her tongue very softly as she crept up, her heart pounding, and carefully set the bowl on the grass. Then, trying to make as little noise as she could, she backed away. 

The next day before dawn, she took another bowl of rice covered with meat sauce to the cave. She approached the same spot, clicking softly with her tongue. She saw that the bowl was empty, replaced the empty one with a fresh one, and again left, clicking softly and trying not to break twigs or rustle leaves, or do anything else to startle and unsettle the wild beast.

So it went, day after day, for several months. She never saw the tiger (thank goodness for that! she thought) though she knew from footprints on the ground that the tiger - and not a smaller mountain creature - had been eating her food. Then one day as she approached, she noticed the tiger's head poking out of its cave. Glancing downward, she stepped very carefully to the same spot and with as little noise as she could, set down the fresh bowl and, her heart pounding, picked up the one that was empty.

After a few weeks, she noticed the tiger would come out of its cave as it heard her footsteps, though it stayed a distance away (again, thank goodness! she thought, though she knew that someday, in order to get the whisker, she'd have to come closer to it).

Another month went by. Then the tiger would wait by the empty food bowl as it heard her approaching. As she picked up the old bowl and replaced it with a fresh one, she could smell its scent, as it could surely smell hers.

"Actually," she thought, remembering its almost kittenish look as she set down a fresh bowl, "it is a rather friendly creature, when you get to know it." The next time she visited, she glanced up at the tiger briefly and noticed what a lovely downturn of reddish fur it had from over one of its eyebrows to the next. Not a week later, the tiger allowed her to gently rub its head, and it purred and stretched like a house cat.

Then she knew the time had come. The next morning, very early, she brought with her a small knife. After she set down the fresh bowl and the tiger allowed her to pet its head she said in a low voice, "Oh, my tiger, may I please have just one of your whiskers?" While petting the tiger with one hand, she held one whisker at its base, and with the other hand, in one quick stroke, she carved the whisker off. She stood up, speaking softly her thanks, and left, for the last time.

The next morning seemed endless. At last her husband left for the rice fields. She ran to the hermit's hut, clutching the precious whisker in her fist. Bursting in, she cried to the hermit, "I have it! I have the tiger's whisker!" 

"You don't say?" he said, turning around. "From a live tiger?" 

"Yes!" she said.

 "Tell me," said the hermit, interested. "How did you do it?"

Yun Ok told the hermit how, for the last six months, she had earned the trust of the creature and it had finally permitted her to cut off one of its whiskers. With pride she handed him the whisker. The hermit examined it, satisfied himself that it was indeed a whisker from a live tiger, then flicked it into the fire where it sizzled and burned in an instant. 

"What have you done?" Yun Ok cried, horrified.

"Yun Ok," the hermit said softly, "you no longer need the whisker. Tell me, is a man more vicious than a tiger? If a dangerous wild beast will respond to your gradual and patient care, do you think a man will respond any less willingly?"

Yun Ok stood speechless. Then she turned and stepped down the trail, turning over in her mind images of the tiger and of her husband, back and forth. She knew what she could do.

HOPE Floats into the New Year...

Happy New Year to one and all!

It seems like every year there are those who look forward to the beginning of a new year, because it’s like a fresh start. Maybe you are anxious to say “goodbye” to the year past-with whatever trials and tribulation, heart-breaks and struggles you may have experienced. Then there are those who can hardly bear the thought of letting the past year go because  time seems to be going so fast. Or possibly because it has been a wonderfully life-changing year or maybe it has a lot to do with fear of change or fear of the unknown and the uncertainty of what the coming year might hold.

Whatever the case may be, time marches on and we have little control over that. What we can determine, though, is how we choose to face the unknown and the challenges and struggles that will surely come our way in the year before us.

In my favorite picture of this summer past, eight of my grandchildren are featured with various expressions and emotion. Even though I took the picture, the humor of it didn’t strike me until I saw it in print. I immediately thought, “They are expressing almost every emotion that I have experienced this year!” Seriously, it makes me laugh every time I look at it.

The two youngest, Mary and Nuriah are not happy! They were tired and weary and each wanted her mommy, not more pictures. (Life, at the moment, was overwhelming them and they needed the comfort of safe arms). Two of them, Jacob and Josie, are scratching their chins with a sense of perplexity…pondering something or the other! Aiden is simply contemplating the universe as he knows it. (Personally, I spend a lot of time in contemplation, pondering life situations and trying to make sense of it and find answers that make sense! I know each of these expressions well. And “I just don’t get it” is a phrase that is not foreign to me.) 

Anna (bottom corner right) is totally in a place we affectionately refer to as “Annaland” (My children call my kindred state “Debbyland.” I think they are right next door to each other.) Ian looks like he just whacked Nuriah on the top of the head and is watching the aftermath and waiting for the consequences and his brother Ricki is laughing about the whole situation!

Laughter, wonder, frustration, consternation and ornery delight about sums it up! Well, actually I could add a few more. This year I have known anger and total bewilderment and great joy and monumental excitement and untold grief. But I have also seen miracles of the most miraculous kind! Through it all, the good, the bad and the ugly, my hope remains fully and steadfast on my Father God. I know, beyond any shadow of doubt that He loves me. He is available to me and His promises to give me HOPE for whatever this New Year holds. 

My family already knows that, the LORD willing, in May of this year we will be celebrating and rejoicing in the birth of Eli. At the same time, we are daily expecting to hear a diagnosis about another child that is already causing us to cling harder to our God. I am glad that He has given me the blessed assurance that I can bring all of my “stuff” to Him and rest easy...with HOPE!

One of my favorite songs is sung by Twila Paris. She says so well what my heart cries.

The Warrior is a Child

Lately I've been winning battles left and right 

But even winners can get wounded in the fight 

People say that I'm amazing
Strong beyond my years
But they don't see inside of me
I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around 

I drop my sword and cry for just a while
'Cause deep inside this armor
The warrior is a child

Unafraid because His armor is the best
But even soldiers need a quiet place to rest
People say that I'm amazing
Never face retreat
But they don't see the enemies
That lay me at His feet

I know that the same hope I held onto through this last year, in my Awesome God, will float right on in to 2012 with me and I remain, as always Blessed and Highly Favored.

I don’t think it’s ever to early to begin to consider, and have a plan in mind-we plan for almost everything, don’t we? So, how will you face the coming year and whatever comes with it? I hope it will be with trust, with faith and with HOPE in Christ Jesus.