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Shawn, originally New Yorker, transported to Tennessee for a few years, chased the love of his life in Iowa, only to move her back to Tennessee. Rachael, small town Iowa girl that traveled the globe to find her love in Tennessee. Little did we know how much our lives would change when Little Miss Magdalyn Joy entered the world. Join our journey through the unknown of Maggie's medical issues, known truths of God, and the nuts and bolts of life.

9.18.2013

An Iowa Hawkeye shirt

After therapy yesterday, while at Trader Joe's for our weekly grocery shopping, we were delighted to see an Iowa Hawkeyes shirt across the way.  As we ended up right behind the lady, I piped up with a "Go Hawkeyes!...Are you from Iowa?"  Little did I know that would prompt a 20 minute conversation.  We began sharing our Iowa connections with one another and were instantly kindred spirits.  While at school at the University of Iowa 18 years ago, she attended Grace Community Church.  She was also married there.  Heritage Christian School, where I taught Pre-K for 4 years, shared space with Grace.  Small world, eh?
Through conversation she asked about Maggie, who was snug in the Ergo carrier.  I ended up sharing a good portion of our journey with her.  Then, she asked if she could pray for us.  Of course I said yes!  So there standing in the beverage and snack aisle she prayed for us and our endeavors.  How blessed we were in that moment and grateful that she decided to wear her Iowa Hawkeye shirt on that day!!

9.12.2013

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...

9.05.2013

Missions Accomplished!!


Overall everything went wonderfully.  (Minus my few unnecessary freak outs at Shawn). 
On Monday we ventured around Summit County with our cousins.  Eric and Beth were wonderful hosts.  We had a great time just hanging with them.  Shawn and Eric could have talked Jeeps and off-roading rigs all day!  What a beautiful area!  Definitely ski country, but lots of bike trails around as well.

Tuesday morning bright and early we went to got Momma's CO Driver's License and Maggie's ID.  Glad we got there right at 8, because it was a busy place, and we were even out in Frisco, not the city.  They only give temp IDs until the photo cards come in.  It'll be interesting to see Maggie's picture.  The lady was trying to get her to look at the camera, and I was like "good luck".  Finally Shawn had to tell the lady that Maggie can't really see. I think she opened her eyes just before the camera flashed, so we'll see.  Sure it will be cute regardless!

From there we went straight to Denver Seminary for a tour.  Walking onto campus felt so natural and comfortable.  We were fortunate enough to catch their first chapel of the semester.  While we were singing praises to God, I had to hold back the tears.  Tears of joy and excitement for this new endeavor for our family.  I'm so proud of Shawn for this big step he is taking.  I anxiously look forward to how God will be using us and the way He has been preparing the way for us.
Shawn will be pursuing a Master of Arts of Leadership, with a concentration in Worship.  He is considering a few other concentrations as well, but Worship is a definite.  The program should take about 2 1/2 years.  This option is less intensive than an M.Div, leaving out the languages, and allowing for a shorter program.  Since Shawn doesn't forsee himself being a senior pastor, the Professional MA is just the right fit!  Last week, we were talking about it and we both agreed that we don't know exactly what God is calling him into, but we could really see It being some sort of outside the box type of ministry.  Though we don't know what that is, we are confident He will reveal it to us as needed.  Until then, we just need to be obedient in following where He is leading.  Everything just felt so comfortable and at home.  To be honest, I'm quite jealous.  I would love to be able to get my Master's there as well, but that might be a bit too much to bite off at the time.  We'll see how the first semester goes for Shawn.

The housing was quite nice and based on the other places we looked at, it is decently priced.  We will have to sacrifice quite a bit though.  The dogs won't be able to come with us, so they will have to go to Grandma Camp to live.  We know they will love being with my mom, but we will miss having our babies around, no matter how ornery they are.  We keep downsizing from our Swisher house when we first got married.  We don't plan on bringing much with us initially.  Shawn's extra time will be devoted to studying, and Maggie and her therapy will be keeping me occupied.  There will be some benefits to living on campus.  We can save $ on fuel and Shawn can come home for lunch.  Plus, this way he'll be more likely to meet up with others for study groups.  The campus also has a great family atmosphere.  Maggie already met another little tyke.
For the stressful part, it is not guaranteed at this point and we most likely won't be able to move directly in when we get out there this fall.  The housing situation has been the most stressful component, by far.  (Thus, my freak outs) I would have liked to have a 2nd and 3rd option lined up before we left, but we are really hoping this will work fine. We may just be living out of an extended stay hotel for a while when we first get out there.

Tuesday night we also got to go see a sweet new baby!  One of my good friends happened to have her baby while we were out there.  While we both were still in Iowa, Jenn taught 1st grade and I taught pre-k at the same school.  We love the VanOtterloos and are excited to have the opportunity to hang out with them again!

Yesterday was appointment day.  We spent some time in the morning getting her medical records a little more organized.  We also drove around some more to navigate the area.  We had to go to 2 different doctors.  Minors have to have two doctors sign off to get the MMJ card.  I'm not going to lie, when we walked into the first appointment, I did wonder what we had gotten ourselves into.  It felt a little sketchy, but the doctors both were very nice.  And, having a letter from our current neurologist helped to expedite the procress.  Dr. Gedde, our second doctor, was wonderful and will be following us along this process. The notaries on staff helped go over all the paperwork and make sure everything was filled out precisely right.  In one spot, I had messed up writing a Y just a little bit.  You could tell it was a Y, but the notary pointed it out, and we all decided that taking the time to refill out that sheet would be better than getting her application rejected.  This is serious stuff!
By the time our second appointment was over, the postoffices were already closed, but the application had to be sent certified mail from Colorado.  So, we drove east a couple of hours, got a hotel, and tracked down a post office early this morning.  Sending it off was a little nerve racking, but also prompted a deep sigh of relief!

Legally, for 35 days with the application and receipt, we could purchase medical marijuana from any dispensary, while we wait for the card. However, the Realm oil is all organically grown and tested multiple times throughout the process.  It's worth the wait for it to be coming from a trusted source.  The process from here...the Realm is planning to be able to take 50 kids off the waiting list with the October harvest.  The marijuana will have to cure for a couple of weeks, and then after control testing, they will prepare the oil in small batches, gradually working their way down the waiting list.  Maggie was around #39 at one point.  Now that we have submitted everything, we are waiting to hear where we sits.  We should be able to get Maggie started some time in November.  The Stanley brothers will be growing her specific plants (she is alloted 24) and they should be ready at the March harvest.  This is all connected with the Realm of Caring.  The Stanley brothers and the Realm of Caring are the ones in various videos we have posted. (Side note...though we didn't get to meet any of the brothers, we did get to meet their mom last weekend.  She is super sweet and I look forward to getting to know her better).
As for now, we have stopped at my mom's on our way back to TN.  There is lots to get done in the next couple of months.

9.01.2013

Awesome church potential tonight

By chance (or God), we ended up checking out a church that was not even on our list of ones hiring, but it had a Sunday evening service and we liked what we saw on the website, so we thought "why not check it out.".  We walked in and instantly felt at home!
There was a long table for people to sign up for growth groups.  After the service, as I was glancing over the table, a sweet couple connected with me and stressed the value of growth groups for them.  I stressed the importance of our life group and how that is one of the most difficult things for us to leave in TN!
Worship was electric! People were engaged and alive. There was even a keytar.
The message was very real, Biblically grounded, and spoke directly to our hearts.
We ended up talking with some of the staff for quite a while afterwards.  Maggie won the Pastor's heart, as he has background in special ed and has a soft spot in that arena.
AND...they are in the preparation phase for launching another site and have been praying for God to provide the staff individuals for that site.
Needless to say, we'll be in touch with them.  Pretty impressive, eh?!?