Advocacy

I finally got letters in the mail today.  Letters to Tennessee Legislators (local representatives, state senators, the governor, basically anyone I felt needed to hear our story and might have an impact on laws)  You may be asking..."why is Rachael putting time and effort in trying to contact legislators when they are moving anyways?" and "what's wrong with the laws?"
A quick run down.
Marijuana is a Schedule I drug.  As defined by the Drug Enforcement Administration, "Schedule I drugs, substances, or chemicals are defined as drugs with no currently accepted medical use and a high potential for abuse.  Schedule I drugs are the most dangerous drugs of all the drug schedules with potentially severe psychological or physical dependence."  Some Schedule I substances include heroin, LSD, ecstasy, and marijuana.
Research for Schedule I substances is more strict and thus limited.  The limited research, doesn't allow the "proof" needed to show medicinal value.  Chicken before the egg, or egg before the chicken?!?!  Clearly, we are seeing that there is medicinal value to this substance, not just for seizures (which is of utmost importance to us), but also cancer, glaucoma, AIDS, and much more.
As the law sits, marijuana is federally illegal.  However, compassionate states, like Colorado, allow for the use of marijuana.  Basically, they put their own parameters on the use of it and enforce accordingly.  But, that still does not change that it is still federally illegal.  Some of this is what has recently been in the news about federal government not stepping in on these states usage.
So, what's that mean for us??  Though we will be legal in Colorado, federally law does not recognize that.  The minute we cross state lines with the marijuana, it is considered drug trafficking, and the other states have the right to prosecute to the full extent of the law.  Remember, Schedule I substance?  and, not only that, but giving it to a child?  Though we have a fully justified reason and it will hopefully be extremely beneficial for Maggie medically, let me put it this way.  What if I was taking heroin across state lines and giving it to my almost 16 month old???  You wouldn't think I'd ever have the chance of seeing the light of day, would you?!  In the eyes of the law currently, the same is true with the marijuana.
In the state of Colorado, we should be fine with her MMJ card and all.  But, once we begin, she will not be able to leave the state.  This is something that breaks my heart.  No weddings, no funerals, no family reunions, NOTHING.  She will be in the state of Colorado until laws change.  Now, many have said..."as long as you don't get caught..."  That's all fine and dandy of a thought, but let's play out the scenario.  First of all, she would be taken away from us.  And secondly, who would continue her treatment if that is the reason they take her away from us!?  So, there we would be in jail, and Maggie wouldn't have anyone to know all her needs, let alone the withdrawals and seizures she would begin to have by not receiving her cannabis oil.  On top of all that, all the families served by the Realm of Caring would then be at risk of losing their supply and the entire operation could be in jeopardy.  Needless to say, NOT WORTH IT!!!
But, the issue of us not being able to return to Iowa or Tennessee with Maggie with us, is still disturbing.  Obviously, we are not afraid to pack up the car and just go wherever.  One of the stipulations when we moved to Tennessee was that I could jump in the car and go visit Iowa whenever I wanted, and that has been wonderful so far.  But, our visits as a family will all come to a screeching halt.  In a couple of months, it will either be Shawn going one place or me going one place, but Maggie will only get to see people that come out to Colorado to visit.  Not only that, there are other families that don't have the capabilities of packing up and moving across the country.
Thus, my efforts for legislative change!!  I don't have all the answers, or even really good lawmaking suggestions, but I do have a story to share.  I want the lawmakers to see Maggie's face and be accountable to her when they determine whether or not medical marijuana usage is criminal.

Below is the basic letter I have sent off (complete with some pictures).  I plan to send additional letters to Iowa legislators as well.  So far, I have also forwarded the letter to a couple of the local TN news stations, as I feel it is an issue of educating the public as well.

September 12, 2013

Dear TN Legislator-

I am writing to you to address a topic that is very near and dear to our hearts.  I realize that there are two sides to every issue, but I feel like our government is gravely overlooking a tremendous medicinal therapy for children like our daughter, medical marijuana.  There is no doubt that the war on drugs is an ever difficult battle, however, legalizing medical marijuana for MEDICINAL purposes could prove to be the miracle many families are looking for.

Our daughter, Magdalyn Joy was born May 2012.  She was perfect!  At 6 weeks, she began having full tonic-clonic seizures.  Since then, everything about our journey with our sweet little Maggie has proven to be a mystery.  Doctors have not been able to quite figure her out.  After tests upon tests, a handful of hospital stays, and multiple seizure medicines, there are still no concrete answers, except that her prognosis is questionable.  At 9 months, she developed a new manifestation of what are known as Infantile Spasms.  She has yet to find relief and control from these seemingly harmless, yet devastating generalized seizures.  On any given day, she has hundreds of them.

Last October, when we were told Magdalyn probably wouldn’t live very long, we were not willing to accept that, and we still are not.  Now, at 16 months old, with developmental delays across the board, Maggie is on the waiting list for Charlotte’s Web.  This specific strain of high CBD, low THC cannabis, has proven to be extremely effective in reducing seizures in children with intractable epilepsy, similar to Maggie.  The progress other children have seen provides hope that someday precious Maggie will be able to fully express her personality, or as we like to say, have the opportunity to emerge from her shell of a body.  We can’t wait for the opportunity to meet our daughter.

With no major adverse affects, I find it criminal to not allow parents the option of providing their children with relief from the constant seizures.  Our doctor at Vanderbilt agrees that cannabis oil is the next best step for Maggie.  I think it is worth noting that the current pharmaceuticals she is on have not been approved by the FDA for use with children and these medications clearly have a negative effect on her growing and developing body.  In my mind, the “unknown” (though many have used the worst part of the plant for years) side effects of marijuana, in no way can compete with the known, approved, and medically acceptable effects that come along with administering these drugs to an infant/toddler. 

We have taken her across the country for intensive therapies.  These have helped strengthen her body, but the paralyzing combination of the ineffective, yet detrimental, anti-seizure meds and the uncontrolled spasms create a fight within her own body.  Though we are extremely hopeful that the cannabis oil, along with these intensive therapies we are providing, will allow her to have the opportunity to have a more carefree childhood, ultimately, our hope is in God, and we know He is the one guiding each step along our path.  He has provided for us thus far, and there is no doubt He will continue to hold us in the palm of His hands.

With that being said, you have the opportunity to make legislative changes, to allow children in crisis the opportunity to have a better quality of life.  If there is anything I have learned over the course of this year, it is to trust my mommy instinct in regard to Maggie’s care.  We are parents that will go to all ends to fight for what we know is best for our little girl.  Medical Marijuana is the next best step for us at this point.

We are paving the way in educating as many as we can on the benefits of Medical Marijuana.  We have a tremendous support system that has rallied around us and continues to follow our entire journey.  Up until a year and a half ago, my opinion would have been drastically different.  It is my hope and prayer that as you put a name and a face (an adorable little face at that) to this issue, you will also see the opportunity you have to impact this little life and so many others.

I will be in contact with you and/or your staff to set up a time to meet with you and discuss this issue further.  In the meantime, we would love for you to read more about our journey at www.theselmeskis.blogspot.com and our “Miracle 4 Maggie“ Facebook page.  Thank you for taking the time to understand this issue from the perspective of a determined parent, wanting the best for her child.

Sincerely,

Rachael Selmeski (aka Maggie’s Mommy)

Please join me in praying for receptive hearts and the opportunity for Maggie and I to meet with these individuals.  Also, for my boldness when I do get to meet with them.  Until then, I better get off the computer and get back to packing...