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. However, 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 Lolly 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? Nor can we 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 continued 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 needs 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 compound or extract that can be given to children in a dropper or added to food.
Further investigation reveals that the various compounds in cannabis have been used successfully 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, Israel, China and other countries with astounding results. There are any number of videos online that show children before and after receiving cannabis and HOPE begins to rise in your spirit. Imagine!
BUT, there is a problem. A serious problem.
The plant that we call medical cannabis is also known as “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 it won’t make a child “high,” but instead it calms their brain.
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, medical 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. So our journey began...
Medical Cannabis: Chapter Two
It’s been a little over six months since I, once again, chose to step out in faith by making the decision to support my daughter in the extremely challenging battle of trying to legalize medical cannabis for my granddaughter Anna.
When this journey began, Lolly and I were both in this for Anna’s sake, but soon we began to meet other families with children like Anna. We fell in love with other people’s sick kids. We began to care about other moms’ struggles and their daily challenges. We heard their stories. We watched their videos. We added their heartache and grieving to our own. We grew a new family.
I began to pray for these other families and their struggles. Not surprisingly, I found myself with a “new” ministry. Blessing and encouraging and praying for these hurting families at every opportunity. I have come to believe that, for some of them, I may be the only “pastor” they ever relate to (I trust the LORD will give me the love, wisdom, grace and mercy to be His light to moms and dads who wake up every morning wondering if their child will still be breathing or if they will live long enough to see the prohibition of cannabis ended and available for their babies.)
Over the months we have continued to add others to our “new family” as we met more people with all kinds of diseases and conditions wanting the same thing we do...access to the medicinal properties of a plant. A plant! An herb that for thousands of years has been used for its medical benefits (until it was outlawed because of the greed of several wealthy, influential and infamous men in the 1940’s). A plant, that I believe with all my heart, was included in God’s proclamation in Genesis 1:29; “Then God said, “I give you every seed-bearing plant on the face of the whole earth and every tree that has fruit with seed in it. They will be yours for food."
I have NO IDEA how many of my friends have faithfully read my blog entries and Facebook posts, watched the videos, studied the issue, followed along with us with support and prayers and encouragement and letters to our legislators. Our amazing supporters have been a rich blessing.
As well, there have been a handful, five to be exact, who have questioned my position in one way or another. It must be noted that each of their concerns stemmed from family members or friends who have or are currently “abusing marijuana.” (My first thought is always the same, “We are not even talking about the same thing!” But that is another topic altogether.)
One of these friends gave me some strong challenges which brought me to this place of pondering.
So, I took her challenge and I asked the LORD to help me to see what I needed to see and how to answer her challenges with grace. It was only seconds before the picture began to unfold...I’m standing on a hill looking out over all of creation and randomly picking out things that God created for His honor and glory and for the good of His people... Music, Dance, Meditation, Motherhood, Marriage, A Plant!
Immediately, I find myself grieving because every one of those things have, in a myriad of ways, been misused, abused, confused, tainted and changed by people. These things that God created for good, men and women have turned into something that He did not intend because of sin. I can’t begin to imagine how it grieves my Father, who gave us all good gifts. Then I am even more grieved to realize that it’s not just “the random things.” It’s everything in all of God’s creation, everything touched by the sinful nature of man...everything.
As I continue to ponder a word unscrambles itself in my mind.
The word is "REDEMPTION”-the action of saving or being saved from sin, error or evil.” I’m so thankful for God’s redemptive plan in my life! But there’s even more to REDEMPTION! It is also “the action of regaining or gaining possession of something in exchange for payment.” It is synonymous with retrieval, recovery, reclamation, repossession.
So, I have come to the conclusion that REDEMPTION is the place this issue has brought me. Redeeming a God-given plant and restoring it to the place from which it should never have been removed in the first place. Reclaiming it for the good of mankind and little bitty babies.
I can’t stop people from misusing cannabis. I can’t stop the greedy from profiting from its abuse. But I will do whatever I can to make sure that, in its medicinal form, it is available to those who need it to live, to thrive, to see, to breathe, to walk without pain, to flourish. I will do my part for every man, woman and child who needs it.
This is where I believe God has brought me "for such a time as this." As for me, I am recommitting myself to ALL of God's redemptive purposes.
Isaiah 5:20 “What sorrow for those who say that evil is good and good is evil, that dark is light and light is dark, that bitter is sweet and sweet is bitter.”