Wednesday, September 18, 2013

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?
  • 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?