Now, where do I begin?!
Lots of BIG changes in store for the Selmeskis. A couple of months ago, Shawn shared with our small group that he feels like we are a sailboat out in the middle of the sea. He described it as having our sail up but no rudder to determine the course, just have to rely on God to blow us in the direction He wants. The following week, our church had used a quote for something else. I think it resonated so loudly with our personal situation. "Ships are safe in the harbor, but ships are not made for the harbor." So true for all of us!
Right now our ship is headed to Colorado. Literally right now, as I type we are just arriving but also permanently (if that means anything when following God) in a couple of months. This week we are getting all our ducks in a row.
So, what are those ducks?!?!
There is no way I'll be able to include all the little things that confirm this move, but I'll do my best.
As some of you have tuned in, we had been exploring the option of medical marijuana for Maggie for the past few months now. It was back at the beginning of May that we both were really intrigued and started considering MMJ as an extremely viable option for our sweet little girl. This is the original video we saw:
You can also search 'Realm of Caring' on YouTube. With the recent airing of the WEED documentary on CNN, it prompted us to begin seriously considering this. We were planning on giving the FHC program a few months so we could evaluate that by itself, until I tuned into a conference call a week and a half ago. On that call, I learned more about the grow cycles. Harvest takes place 2 times a year, in October and March. As it sat at that time, there were 97 kiddos on the wait list (one being Maggie). The Realm anticipates they will be able to take about 50 kids off the wait list with the October harvest. As long as we establish residency by October, then Maggie's specific plant count will get planted so her specific plants will be ready at the March harvest. If we waited, her plant count wouldn't get in until March and then not be ready until next October's harvest. We weren't wanting to wait that long.
Something I have come to realize from hearing the other successes and chatting with other parents. I have become complacent with all the spasms. We just let them run their course and don't get too concerned about them. Heck, it just looks like a startle reflex and doesn't seem to phase any of us much. However, they are generalized seizures every time, wasting lots of energy, and damaging her developing brain. One day this week we started counting with a clicker to see how many seizures she actually has in a day. We were blown away...over 500 in one day. If you would have asked us, we both agreed we probably would have told you somewhere around 50. Guess our estimation skills are not that great. I would say about half of hers were the infantile spasms and the other half were what I believe to be myoclonic jerks. The success that these other families (also with children with very difficult to manage seizures) are seeing provides a new hope that we could get them to stop (or at least decrease the frequency). Not to mention, that by using the cannabis oil instead of pharmaceuticals, the detrimental side effects could nearly disappear.
We are aiming for a trifecta. Colorado has some wonderful IMT therapists so we will be able to continue the body work to restore soft tissue motility. (Though it's going to be extremely difficult to say goodbye to Piotr and the staff in Knoxville. They have been a tremendously intregal part of Maggie's stability. We LOVE all of them!). But it's great to know we will have options of new therapists to work with Maggie.
We also plan on continuing with her program. Though it may be crazy the next couple of months, we know that it is also a key piece in getting her brain organized and promoting developmental progress.
And finally, the MMJ provides hope that the seizures will become more controlled, without destroying her body!
But that's not all...Shawn is applying to Denver Seminary and will be starting classes in January for Worship. Wow! It may seem way out of the blue to many, but God's been laying the groundwork for a while. Two years ago while at the Christmas Eve services at Prairie Lakes, the Spirit overtook Shawn and revived his passion to be in ministry and deepen his theological knowledge. At that time we talked some about seminary. My personal preference was Denver Seminary, based on the handful of quality pastors we know that God is using effectively in His service now. I was pregnant with Maggie at the time. We never really acted on the prompting, and then Maggie was born, and then, well..ya know, life got a little crazy.
Over the past couple of years, Shawn has initiated and pursued various worship leader positions. However, for one reason or another, they have not panned out. I know, as well as most everyone that attended Heartland knows that Shawn's skills and talents allow God to use him in great ways. He has been more than qualified for many of the positions. Most recently this summer, Shawn had a few fairly promising leads on positions. There was one in particular in which they sought him out to apply for the position. After waiting for nearly a month after the interview, Shawn recieved a call the Monday after the airing of the CNN documentary. They decided to go another route. This was dissappointing and heartbreaking, BUT there is no doubt that this no was a "I have something different in store for you.". Like Shawn has said, we've had our sail up and have been waiting to see where the Lord takes us. I hope you didn't miss that after a month of waiting, we recieved a shut door, the DAY AFTER our continued exploration of cannabis had been sparked. Before Shawn even got home that night, he had contacted Denver Seminary to get more information. It was confirmed just like that in both our minds. Logistically we've talked through lots of details, but there really wasn't much conversation about whether or not we should go. God provided a confidence in both of our hearts to know this is the next step for our family. Knowing the background and watching the documentary the night before, my dad, without any reservation, summed it up pretty well..."looks like Denver Seminary and living on love and weed!"
Logistically, there are a couple of neat things to share with how God is making this possible. In the state of Colorado, Maggie will qualify for nursing hours which could be provided by a home healthcare company. The cool thing is that the said home healthcare company can hire me, the parent, to go through CNA training and then pay me to provide the services, basically everything I already do. I wil be an employee, have to attend meetings, log care, etc., but I'll be bringing in an income to help support us.
Also, we have found 4-5 churches looking for a part-time worship leader. We will be meeting up with a couple of the pastors this week.
In other news, we had to drop a urine sample off at Vandy on the way yesterday. They also drew blood from Shawn and I, as genetics wants to look further into a possible gene expression on Maggie that is of undetermined significance. Hmm.. Don't know anything about that really, except Mommy and Daddy had to get poked and Maggie got out free!
Also, we were thrilled to find out that our neurologist is in support of the MMJ as a next step for Maggie. It's wonderful when her team is on the same page as us!
So, this is going to be a busy week. Lots of appointments and scoping everything out. We could take all the prayers we can get to have everything line up. The housing is of particular concern to get figured out this trip.
Luckily we got here in time to meet up with other Realm families. What a blessing to already have such a tremendous network of truly 'special' families!
Crazy?!? Yeah, we know!