But God

 

“My flesh and heart may fail, But God is the strength of my heart and my portion forever.”

Psalm 73:26

 

Radio Silence…

In a world that seems to rarely stop or slow down these days, the world has become consumed with the desire for instant gratification.  Whether from our devices, computers, social media, and other technologies, we have seemingly forgotten what it’s like to have to wait for a response.  And while modern technology has made communication easier and keeping in touch with others from around the world seem as if they are in the same room, you might feel that there has been a missing link for The Foxhole.  True, we have not posted in some time aside from celebrations throughout the years.  Between time constraints with life, interactions with social media, and perhaps even COVID (remember when that happened?), there has been radio silence with The Foxhole. 

While the silence was not intentional it did mean a couple things.  One, things were fairly status quo.  Posts and interactions since 2017 were more frequent through other channels and quite frankly, there was not too much to report in the way of Princess’ health (Praise Jesus).  And two, we wanted less and less for the focus to be about us, not wanting our posts to seemingly always be about how challenging things were, rather to focus on Christ, His good work, and of course others.  And just like sometimes there was a break in the radio silence (try to remember what that felt like), so it is with this post.  As in the words of Paul Harvey, “Standby for news!”

Scrolling through my desktop, I pulled up a post that we began to pen in June 2022.  And therefore, a good starting point to catch you up to date. 

A LOT has transpired since our last post.  Many of you faithfully followed us intensely during what was probably our darkest time when Princess was on a ventilator due to her seizures in July 2017.  While things have improved significantly since then, Princess still does have her challenges with her seizures, though now off all medications and just utilizing CBD alone, she is averaging fewer seizures than even before.  While things are improved, this past year (2022) has been pretty good. However, November 2021 and April of this year did prove to be very challenging and proved themselves to be quite the anomaly.  Both months and times Princess recorded over 300 seizures/events…JUST DAUNTING!  In fact, over just a period of two days, while Princess recorded just 17 seizures, her Neurologist captured on an EEG 74 seizures!!!  My, oh my!  We have always had a good idea that Princess’ brain was ALWAYS hot (active), but to have confirmation and even see that she had 4 times more seizures take place than actually recorded…just numbing. 

Interestingly, as we have seen some improvement, we have been seeing more of a correlation of Princess’ heart rate to her seizures.  Meaning?  As her heart rate is elevated, her seizures increase.  As her heart rate decreases, her seizures diminish in frequency.  For those that have followed our journey, Princess’ first diagnosis all the way back in 2007 was POTS (Postural Orthostatic Tachycardia Syndrome).  We have questioned multiple times as to which really came first for Princess- POTS or the Seizures.  As I have mentioned a few times here lately, our focus, understandably, has been on Princess’ seizures.  Truly they are the most disruptive to life and cause us to push pause on so many things.  However, seeing a greater correlation over this last year, and with April proving to be a challenging anomaly, we began to ask ourselves could POTS have more to do with Princess’ seizures???  While it has been 15 years since her POTS diagnosis, we did agree that medically A LOT has probably changed for POTS and the information that is now available.   And sure enough, indeed, we discovered that to be the case.  In our desperation in April with again over 300 seizures/episodes recorded, we began our quest for more information on POTS.  Behold we found a resource in our very own backyard in a doctor, who herself had POTS and cured herself after a long 10-year battle. 

Wondering if this could be a light at the end of the tunnel, we began working with POTS Cares through their POTSCares Care Package.  Praise the Lord, when rescue meds could not stop the seizures, within one week of starting the POTSCares Protocol, Princess began to experience a major difference for the better.  Her seizures subsided, and more importantly, her heart rate decreased.  Just as an example, while sitting in a chair during April, her heart rate would easily beat at 145 bpm.  After a week of going through the protocol, her hear rate was now down to 80 bpm.  This had a substantial impact on her seizures and reduced the frequency considerably while also giving Critter and I a glimpse of Princess that we have not seen or experienced in some time! 

 

  Since that post (2022), we have still been on the same journey.  As with many times before, the initial progress seemed to turn into a stalemate and what once provided some relief was no more.  And while things didn’t quite get too out of control, the fact is, Princess just musters through and keeps fighting a valiant fight day, after day, after day.  If you have crossed paths with her, you hopefully have seen her fighting spirit and her never ending selfless service.  Truly, her grit and determination to continually fight an uphill battle day after day is commendable.  And with any battle or war that rages on and on, we have seen its toll- physically, emotionally, mentally, and even spiritually.  Truly, the reality of living with an invisible illness that controls so much of your life, begins to taunt and discourage, where there just does not seem to be answers. 

And while the “status quo” or so it seemed, was not really radio silence for us in the daily battle, our “silence” was startled nearly three weeks ago as if the tragic events of 2017 were on repeat.  For the last few weeks Princess’ seizures were becoming more frequent.  The recent impact from 2022 seemed to have faded and what began as somewhat promising was quickly fading.  We literally found ourselves going through the motions of life and Princess just having one seizure upon another.  With her usual trips others were taking notice and their comfort and support were sweet.  People could look at Princess and just know something was not right.  And as this now 17 year journey has taught us, we just have to grin and bear it, this too shall pass. 

Building up to unforeseen events, Princess would eventually find herself having a seizure nearly every 15 minutes.  In one doctor’s office by this time, I thought to myself that you could actually set your watch because of how on the spot her seizures were happening.  And while the Doctor had no other options for us, we went home to endure (if possible).  The evening had us doing our routine and Critter and I working to just allow Princess to be comfortable (also, if possible).  By 10 PM, Princess was no longer getting any reprieve in between her seizures and it would appear that she was now just in one continual event, one seizure immediately following another…

10 PM, Sleep…. Some radio silence. 

July 6^th, 2:24 AM 

In the moment of radio silence, did you ever turn up the volume to only forget to turn the volume back down?  In a flash, the silence was broken, and my mind raced back to July 2017. And just as if the "volume" caught me off guard I quickly pulled things together and this time waking Critter, together we quickly called 911 while Princess is convulsing uncontrollably.  For those who have followed us, you’ll recall that Princess does not convulse with her seizures.  In fact, I would have said she has never convulsed had 2017 not happened.  It is just something that doesn’t happen.  And yet, here we were…. again.

The familiar ER bay, walking past the ER room that once before held Princess.  Wondering, would I see familiar faces from just 6 years prior?    With confusion looming in the ER waiting room I was initially blocked from being by my Princess’ side.  Meanwhile, Princess is still convulsing… nearly two hours now.  Finally, being allowed into the ER room, I come to Princess to find her surrounded by a team and on a ventilator.  Still seizing, I began to provide familiar instructions and medical history to those nearby alerting their attention to Princess’ wish…. STOP.  

17 years… Depending on your perspective, this can be a short amount of time or a long amount of time.  In the face of an illness, we can tell you that it is a long time.  As mentioned earlier, the journey has produced scars, and taken its toll.  From a physical, emotional, mental, and spiritual standpoint the years have gotten tougher.  You begin to watch life pass you by.  You begin to doubt and even question your existence.  Ironically, my personal time in the word was recently in Job.  He too was facing a battle, not of his own choosing, and as a result questioned his own existence.  So seemingly these present times are almost a “Job-like” moment.   And while I can only pen the words and emotions I witness, Princess does not question her existence, rather, she has an extreme longing for going “home.”  So while in the past we have just mustered through, this particular time was an opportunity to truly stop.  God…. YOU'RE IN CONTROL.

 

The verse at the top of this post has a particular phrase that a dear friend and sister in the Lord shared with me in the early hours of July 6^th.   While the phrase is not unique to this verse only, it does find itself weaving its way through the Bible as if God knew we would always need a reminder that He’s got everything under control.

BUT GOD.

With all treatment stopped, Princess was now being moved to a Comfort and Care situation (hospital’s way of moving you to hospice).  While by this time Princess was no longer convulsing, we now were in a waiting period to notify family and allow time for Critter and Princess’ Mom to arrive.  And wait.  As calls were made and we also began to work with the physicians on the next course of action.  Ethically, we were in a situation where we just couldn’t stop the ventilator as Princess was under heavy sedation, therefore it was a waiting game.  Questions of could Princess breathe on her own?  Could Princess respond?  Did Princess have all her faculties?  And so, we waited. 

I personally find the phrase “But God” to be quite interesting.  Many of the passages that include the phrase draw a stark contrast to the moment before the phrase.  In reality, it is a testament to the awesome power of God.  It is a phrase that centers and focuses all attention to Him (RIGHTFULLY DESERVED).  It is a phrase that can stand on its own.  BUT GOD.

And so it was for my dear Sister in Christ who just kept saying to me.... But God. 

As Christians, we operate with a confidence that God is in control.  Therefore, we don’t have to fear, and we know that the challenges we face can indeed be faced, because we know God is with us.  And even in our darkest moments, though a little distracted, we are grateful for those that come alongside and provide us with encouragement, “But God.” 

Therefore, as Psalm 73 states, our flesh and heart can fail, but God….He is Princess’ strength.  But God…He is Princess’ deliver.  But God….He is Princess’ Rock and Salvation. But God….He is able to make all things new.  But God….He is able to deliver and restore. But God… He can overcome all things.  But God…

And twelve hours later, But God…began to wake Princess.  Her ventilator turned off, she began to breathe on her own!  But God…. Princess opened her eyes, was able to briefly communicate and hence God was doing something unimaginable.  Praise Jesus!

All within 81 hours from 2 AM July 6^th to Sunday July 9^th Princess came back to her earthly home.  Though she is presently on hospice, and we are navigating the process, BUT GOD is performing amazing work and even hospice is confused.  She is strengthening each day, and now our focus is that each day that we have breathe in our lungs, we must give God the glory in all ways! 

 

Please pray:

•       Princess would get stronger each day
•       Princess would feel better- she still feels like she is sitting in a constant seizure (think of being nauseous and sick to your stomach 24/7)
•       Princess would be encouraged rather than discouraged
•      Connections to others- the journey is tough