Drake is struggling a little right now… we made an adjustment to his meds where we dropped a WHOLE dose of sodium benzoate (artificial preservative we have to give him to keep his glycine from throwing him into a coma) which is a HUGE praise report…he is down to only TWO SMALL doses now. But…there is an adjustment period…..there is always an adjustment period… he is having awful seizures and sleeping a lot. With there being no real treatment for this disease, everything we try (which we try the most minimal risk, purely natural options) is still like driving blind folded, down a hill, with bad breaks…. Drake can spike so quickly it is truly a faith walk hourly after we make any adjustments…. Drake is the first to try the cinnamon with NKH, so.. everything is an educated guess… we have to calibrate… and weigh pros and cons…but ultimately we pray, and try our best to “guess" what the right “dose exchange” needs to be. The research on cinnamon is plentiful, but it is used as more of an enhancement therapy and not a life altering therapy like we are using it now… at least the research is not there yet… we hope our strong little boy can change that.
I have to admit when Drake struggles…. it is hard… we trust God’s sovereign hand, and we feel He has lead us to this place… but then the devil and the doubt kicks in…. I especially beat myself up because all the dose changes, and pushing to get him off the synthetic medicine, is our push…not our doctors.… so when Drake succeeds it feels amazing, and so affirming that this is the right path… but as we wait for labs and wait for relief from the seizures, and watch him sleep almost all day because the seizures wear him out so badly… I struggle… the devil lays it on thick…. “I wanted this… I made a medicine change and that is why Drake is suffering again..” Though we are stronger than in the beginning of this journey… I would be lying if I said we didn’t struggle with self doubt and at times fear of what is happening inside his body that we can not see….
Eric and I have been praying a lot and trying to thicken our spiritual armor. Spiritual warfare is real, and it is kicked up when you are trying to discern God’s direction through the haze… God sent a lady I had never met before… to speak to my soul. Let me tell you how amazing our Father is….when the Herald Journal came to do an article on Drake a few weeks back, the writer mentioned that Drake was using ceylon cinnamon from Sir Lanka in his write up. I was impressed he mentioned it because that was a detail the other news people had left out. A lady in the upstate saw the article and contacted her friend that lives in GREER that is from SIR LANKA. This woman found our website, and wrote me an email, offering to help us get the cinnamon from her parents that are still living in Sir Lanka. I told her that would be amazing, because right now we do our best sourcing it through the internet.
So, listen to how God orchestrated all of this…after we spoke ONCE this lady contacted her parents in Sir Lanka, told them about Drake and the cinnamon, sent them the article from the paper. Her father then called multiple facilities there to make sure he was getting the most pure source, found a company, told them about Drake…sent the company the article… and the company sent us about six months worth of ceylon straight from where it is harvested…. and you want the kicker…. they didn't charge us a dime….. and also the company said they would be happy to help us in the future to make sure Drake has what he needs. Guys… I went Monday to meet this precious mom and pick up the cinnamon (her father sent the cinnamon to his daughter to get to us) and I can’t explain what a blessing this family’s actions were to us…
I had been struggling with doubt and fear, because Drake was struggling again by what felt like our hand… I was questioning if the cinnamon was working or if I was crazy to think this could work… we aren’t scientist…. We are sleep deprived parents… with a full plate and not enough hands..… and this whole time God’s hands were orchestrating this perfect, detailed plan to not only get us the most pure cinnamon from the very source it originates……but without us physically searching, nor having to research! AND we have a direct connect to get it in the future when Drake needs it…… I truly feel like God was saying …” trust me”… “ it is hard right now, but do not loose faith…. I am doing far more than you can imagine or hope for”…. I left that house, with my box of cinnamon…. and I cried all the way home…. tears of joy and tears of relief…. I was carrying a burden that was never supposed to be mine… All He asked me to do was trust Him that He would take care of it… I saw God that day in this beautiful stranger…. someone told me once… Trust God’s heart….when you can’t see His hand…. and we are trusting that the best days are still to come….
We love you and thank you for loving us….
-Eric, Tarah, littles and Drake