Some Thoughts on Healing…

Our family went on a road trip last weekend.  We drove up to Redding, CA with a small group of friends to visit Bethel Church and attend one of their weekly healing prayer services.  This can lead to questions so if you’re interested in my thoughts on healing, here’s my attempt to explain…

One of the things I value most about my faith journey is the variety of church “homes” I’ve had in my lifetime.  For example, I was born into the Reformed Church, accepted Christ and grew up in both American and Southern Baptist Churches; as a young adult, I worshipped at a Baptist church plant, a black gospel church, a home church in Tijuana, Mexico, a multi-ethnic inner city church and an Evangelical Free Church; Rolf and I attended a Vineyard Church when we were first married, Wilson and Max were baptized in a Presbyterian Church as a babies, Olivia was dedicated in a Foursquare Church and we currently go to a Nazarene Church.  The Bible and my faith in Jesus have always been at the center of my spiritual experience but the traditions and liturgy have varied over the years and I love that. 

I learned early on that no church or denomination is perfect so my approach to the churches I’ve attended was always to plant relational roots, participate in the traditions historically relevant to that denomination and, most importantly, glean what was life-giving & spiritually relevant.  Scripture shapes my view of who God is and how He interacts with the world and being a part of so many different Christian traditions (at least in America) helped broaden my perspective of the church and how it interacts with the world. 

Anyway, I share a little of my history because I think it helps to set the back drop for my thoughts on physical healing as it relates to church practice.  Some of the churches I was a part of embraced the ministry of healing with a zeal and a passion that could blow the roof off a building.  In others, the subject never came up…not in the pulpit or in practice.  The subject of physical healing can get emotional and divisive real quick which often leads to confusion and discouragement.  I think the heart of the problem is that it’s so easy for us to get hung up on the methods of physical healing and forget to focus on the One doing the healing.  I FOR SURE don’t claim to be an expert or even a student of supernatural healing but I’ve been forced to face two non-curative, palliative care situations in recent years which leads me to examine my beliefs about healing and, therefore, is a significant part of the journey for me. 

To be clear, I believe I am on a journey of healing.  Although I’m asking God for the miracle of physical healing (as I did for Rudy too), I recognize it is just a temporary “fix” as I’m going to die someday and experience the ultimate healing of Heaven, equally miraculous, and there is great assurance & comfort in that for me.

But, as it relates to physical, emotional and mental healing this side of heaven, I believe God heals and because creativity is at the heart of who God is, He is creative in how healing is expressed.  For example, in His infinite wisdom and power, He created the human body to heal itself, He has empowered human beings to assist in the healing process through the practice of medicine and He has the power to heal supernaturally.  Based on the examples of healing in the Bible, it’s clear that one’s healing is NOT dependent on his or her faith but is the result of the bigger design and purposes of God…drawing people to Him and bringing Him glory.  As much as I desire to have ALS lifted from me and my nervous system resurrected for personal reasons, I don’t want to lose sight of the fact that if God does choose to heal me supernaturally, it’s part of a much bigger design and if God chooses to call me home to Heaven, that, too, is part of a much bigger design.  

As I mentioned in a previous post, I’ve been doing my due diligence (or “appraisal of assets”) in the medical and therapeutic resources available to me (i.e. I finished my first 14 day cycle of Radicava infusions today) and I view my spiritual pursuits like the trip to Bethel as part of my appraisal of assets on the spiritual side…the pilgrimage provided us as a family an opportunity to concentrate on healing and seek God together specifically for healing.  I walked away from the weekend feeling ministered to,  confirmed in what I believe about God and healing, motivated to continue to pray for healing and challenged by God (even in the days leading up to our road trip) to “prepare for healing”…(I’m not quite sure what that means yet and am eager to understand it more as I continue to explore it).

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Seeking God in community is THE BEST!
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Fun at sundial bridge!

 

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Simply and selfishly, I want to live and enjoy the fruits of my labor.  Rolf and I worked hard at raising our family and we love being with our kids.  I want the joy of watching Wilson, Max and Olivia find their individual paths and the privilege of encouraging them along the way.  I want the joy of pouring into the lives of my grandkids and sharing the ups and downs of growing old with Rolf.  I want to grieve Rudy without grieving me too.  I don’t want to slowly lose my ability to interact with the world and the people I love OR slowly lose my ability to do the things I love…to sing and lead worship or play guitar and make jewelry.  I don’t have any option for physical healing other than a supernatural healing and my response to that is to recognize my utter dependence on God, boldly ask for my heart’s desires and trust God to show up like He did for Moses in Exodus 33:18ff.  God will have mercy on whom He will have mercy and He will have compassion on whom He will have compassion and so I pray Psalm 86:3-4:  “have mercy on me, Lord, for I call to you all day long.  Bring joy to your servant, Lord, for I put my trust in You.”   Ah, JOY!  That’s a true gift.  This is a painful process, for sure, sometimes it’s sharp, drop to your knees kind of emotional pain but mostly it’s a constant deep ache that is impossible to shake.  Have mercy, Lord.  Bring healing.  Bring Joy.  Touch and relieve the deep places of heartache and continue to reveal yourself in fresh, creative, life-giving ways…in Jesus’ name. IMG_0972

Update

Well, once again, what is going on in our household is taking a backseat to what is going on in our community.  I don’t say this begrudgingly…but in disbelief and agony for the many friends affected by the latest natural disaster to hit the Santa Barbara area.  The south coast hillside communities that were threatened by the Thomas fire last month (that ended up being the largest fire in CA history) were consumed with mud after a torrent of rain swept through Monday night.  There was little to no warning for those caught in the mudslide’s path…homes were swept off their foundations completely, many other homes are still standing but filled with 8 feet of mud.  Fifteen people are confirmed dead and 24 others are still missing.  It’s a difficult situation for many in our community to process and we are truly heartbroken for the many we know in these neighborhoods.  Please pray for the folks affected, the rescue and recovery efforts still underway and the amazing local agencies organizing everyone.  It’s an overwhelming situation.

Our introduction to the infusion part of our journey occurred this past weekend before the rain devastation.  I had my temporary IV midline inserted Friday in the early afternoon and my first Radicava infusion done at the hospital later that same day.  Rolf and I went back to the Infusion Suite at the hospital Saturday, Sunday and Monday afternoons and have been doing the infusions ourselves at home since Tuesday.  So far, so good.  The weekend also included getting both boys back to school after their 3-week Christmas break at home and a pre-planned visit with Oma so it’s been especially full.  My ankle is still quite sore but is definitely getting better.   I so appreciate your prayers and encouraging messages…thank you!  As has been the norm lately, ‘so grateful God’s fingerprints have been all over the surfaces of our family’s life in the midst of so many variables that add to the chaos of living right now.

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Bruised but better.

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Rudy had enough t-shirts that all three kids got a special “Rudy Throw” from Oma…every element in the blankets came from Rudy’s dresser. Bittersweet, for sure, but mostly sweet! Thank you Oma.
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There was a sea of “Rudy Blue” at this year’s Kisses from Katie fundraising banquet back in November thanks to the Manning Family and their thoughtfulness in honoring Rudy. Thank you, dear ones, for honoring our boy, sharing KfK swag with us and for your continued work in supporting those who care for critically ill children. Your efforts bless so many.   
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http://www.kissesfromkatie.org

So, I’m not sure what the next few days will hold for us.  Oma’s visit had to be extended a bit because she can’t get to LAX for her flight home…the 101 Fwy is completely shut down due to the mudslide.  An important meeting with my hospice case worker regarding future help in our home had to be postponed as well.

Rolf and I will continue the daily infusions at home through next Thursday.  The following step will be for me to get a permanent port placed in my upper chest and then we’ll resume the infusions the first week of February.  Very doable.  In the meantime, I have a speech assessment and pulmonary function test coming up next week so with all the calendar items from this week being postponed until next week, it looks like we’re in for a jam-packed schedule coming up.  That’s all we know for now.  Thank you for all the inquiries and follow-up messages.  The love and concern is such a sweet comfort.

Thank you, thank you!

 

A Wrinkle In Time

Although my week so far has nothing to do with the 1960’s science fantasy novel about time travel, I do feel as though I’m having my own version of a wrinkle in time as circumstances are forcing me to move at a snail’s pace physically and at warp speed emotionally.  I’m ending the week physically exhausted and emotionally manic…”wrinkled” feels like the perfect adjective.

It all started with a little tumble on Tuesday night that turned into a pretty debilitating injury.  My weakened left leg caused me to fall while stepping up one little step into my bedroom and I ended up badly spraining my good ankle.  It could have been worse, for sure, and I’m so grateful I didn’t break anything but the injury has severely impacted my mobility and I’m walking with the extra support of a walker.  I expect to recover fully from the sprain and hope the use of the walker is only temporary but the reality of the situation is that this fall was a result of my disease and the process is only going to continue so I think it’s safe to say this won’t be my last fall and/or injury and that’s a tough pill to swallow.  One crazy thing about ALS is because there is no pain associated with the disease, there are also very few markers with which to measure the weakness in my body beyond trial and error…there’s no barometer to indicate change.  (I kind of feel like the frog in the pot of water unaware it’s beginning to boil.)  The weakness in my extremities is really only measured when they fail me…usually with no warning and in a split second.  This can be both terrifying and humbling.

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Then, yesterday I got a couple of calls out of sequence in the late afternoon that are ultimately good, I think, but were initially confusing and abrupt and resulted in me being told my picc line is getting placed AND my first infusion of Radicava is happening TODAY!!!  Yikes!!!  This is definitely a lesson in perspective because on one hand, I could look at this sudden turn of events as a miracle and rejoice in the fact that I don’t have to wait any longer to begin this medication treatment.  On the other hand, it’s a life-altering process that, once started, will continue for my lifetime and that feels daunting to me.  It’s all so clinical and routine for those coordinating the treatment and care…it’s all so new and consuming for me.  I need time to process, to adjust, to breathe and I’m not being given that space.  I guess I need it to happen supernaturally…on God’s perspective of time because it isn’t happening in “real” time.  I don’t mean to make it a bigger deal than it is but from an emotional standpoint, I feel like the “sudden turn” experiences of this week are pretty consistent with how life has unfolded for us in recent months…losing Rudy so abruptly without warning, my diagnosis so quickly afterwards, the progression of my symptoms, etc, etc…It’s all coming at us so quickly and the gut punches are feeling relentless today.  I want a break.  I want to be able to stop for a minute and not have something new to process or adjust to…I want to take long, deep breaths…I want time.

I’m also keenly aware of the fact that this is all happening at a time that is typically difficult for me anyway…the month of January has always been hard for me at varying degrees over the years due to post-holiday blues and, when Rudy was alive, the start of “out-of-pocket” maximums again (random, I know, but true).  If ever there’d be a time I’d sink into depression over all that’s been going on, it would be now.

So, if you would be so kind to continue to pray, my requests for today include but are not limited to (insert smiley face):

  1.  A healthy, balanced, motivating perspective on life right now.
  2. Quick recovery and renewed strength in my right ankle.
  3. Protection against depression.
  4. Supernatural ability to adjust to all the sudden changes gracefully with a light-heartedness.
  5. Strength of spirit for all the Geylings.
  6. All around good experience with Radicava.
  7. Lots of reasons to smile.

If all goes as planned, my temporary PICC line will be inserted today at 1pm and my first hour-long infusion will take place at 4pm.  I will receive Radicava everyday for 14 days.  My first 3-4 infusions will happen at the hospital and if I tolerate it well, Rolf and I will be trained to do it at home sometime next week.  After my first 14 days of treatment, I’ll get 2 weeks off.  At some point I’ll get a permanent port placed and every month after that, I will get 10 infusions within a two week period (i.e. infusions M-F for two weeks) and two weeks off for the rest of my life.  Radicava is thought to slow the progression of ALS symptoms (not reverse them) so the hope is this infusion treatment will help to stabilize my situation.  The effectiveness of the drug, of course, is kind of vague because I won’t know what I’d be like if I weren’t on the drug.  It’s not like I’ll have a shrinking tumor to demonstrate that the treatment is working so I think my approach going into this is to assume it IS working and not wonder if it is, if that makes any sense.   A good bit of this will be a mind game.

I’m sure this will all become second nature to us and we’ll figure out how to incorporate it into our daily routine of life but today it feels big and invasive and like something that’s being done to me rather than something I’m choosing to do for my own good.  The number of paradigm shifts that are necessary right now is growing and, I guess, it would be nice to feel (and look) a little less wrinkled. 😉

THANK YOU FOR YOUR PRAYER SUPPORT!  You have no idea how comforting your prayers are to our family.  Love, love, love to you and yours!

 

A Reluctant “Hello” to 2018…

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Happy New Year Friends!  We returned home from a quick family getaway late yesterday so today is a day to unpack, settle in and prepare for the regular routine to begin again tomorrow.  Olivia will head back to school after her 3+ week break due to the Thomas Fire, Rolf will head back to the office and I have a long list of appointments to tackle.  The boys won’t return to their campuses until the weekend so we have a few more days to enjoy with them.  Yay!

In an effort to switch things up a bit this holiday season, we planned a trip to Cabo San Lucas, Mexico for a few days after Christmas.  We left at the crack of dawn on December 26th and enjoyed 4 full days of time together without the distractions of home.  I think we did a good job of embracing the experience even though our minds were consumed with the continued swirl of thoughts impossible to shake.  There were the obvious thoughts of Rudy and the progression of my disease but I also thought a lot about the holiday season as a whole and it’s distinct progression…starting with Thanksgiving as a time to look back and reflect on things for which to be thankful, continuing with Christmas which, for me, is a time to look within and reflect on how Christ’s presence impacts my life and ending with New Years where the focus is often to look ahead with hope for good things to come.  Of course, losing Rudy in 2017 made it painful to look back and particularly profound to look within this holiday season…and is making a look ahead to 2018 kinda empty.

There is a big part of me that wishes I could slam the door shut on 2017 and start fresh in 2018 with a clean canvas on which to create something completely brand new.  The challenge, though, is I don’t feel like my canvas is clean…it’s muddled and cluttered with a full palette of dark colors that don’t seem very appealing or useful in creating anything new.  I guess the challenge will be to incorporate the hardened, dark, textured strokes of 2017 into 2018’s story and trust that we’ll experience the beauty even if the beauty is hard to see at times.

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Christmas Morning 2017
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Cabo San Lucas, Mexico
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Lots of sibling fun…

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Lots of family fun too…though still independent, I did need the extra support of a wheelchair this trip because I’m no longer able to walk long distances. Thankfully, navigating logistics with a wheelchair is second nature to our family.   😉

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Even as I took this picture, it felt unnatural that Rudy wasn’t in it.  How is it that life has moved on to a whole new year? How is it that 2018 won’t include him?  Rudy left us wanting so much more…more of him…more experiences with him.  But just as this picture may have a gaping hole in it for our family it also represents a great deal of promise because of the people in it!  I’m not sure I could be prouder.
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Olivia and Cady stayed true to their commitment to drink ONLY water in 2017 to raise money and awareness for a well in southeast Asia…their reward? Martinelli’s at midnight!
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Oops!  ‘Not quite the triumphant moment they were hoping for…their palates need time to adjust! Ha Ha
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…So maybe the reward is the satisfaction of their mission accomplished! You go girls!!! Change the world one project at a time!!!

Welcome 2018…’praying you hold more joy than heartache.  ‘Praying we soak up all that is true, honorable, just, pure, lovely, admirable and good!!  ‘Praying all of Phillipians 4:4-9 will define you!  Welcome.

 

Dear Rudy,

It’s 2am on Christmas morning and I’m wide awake.  My mind has been consumed with thoughts of you the past couple of days…days filled with traditions we hold so dear like the SBRM homeless guest Christmas feast, cookie decorating, our family celebration with the ladies at Bethel House, the Christmas Eve service at church and going on a Christmas light tour.  We feel your absence so deeply.  We miss you.  We miss your enthusiasm and sense of wonder for the holidays.  We remember how you enjoyed Christmas last year…how you began to really grasp the traditions and anticipate all the fun of the season and I remember thinking, even then, how fun this Christmas was going to be as a result.  But you’re gone and it’s just so hard to accept…still.  Today, Christmas Day, marks 5 months since you passed away.

Your Dad, Wilson, Max, Olivia and I visited your gravesite yesterday and, I admit, it was harder than I expected as I was reminded of special memories that are so tender…memories like singing “Rudolf the red-nosed reindeer” with you, yours and Livy’s Christmas Eve sleepover tradition…watching you proudly hold a real candle at the candlelight service and your squeals of delight over the simplest pleasures.  It’s sweet to see how each one of us at different times and in different ways is choosing to honor you in the traditions we shared with you as well as include you in the new experiences of this very different holiday season.  You aren’t far from every thought…from every breath.

I wish I knew what you’re doing this Christmas.  I wish I knew what new experiences you’re having and with whom you’re spending your time.  There are so many thoughts, so many impressions and feelings swirling around that are impossible to harness and organize.  I guess the only way to do today is to get swept up in the swirl, ride the wave and remember that we, as a family, are forever bound.  Merry Christmas precious boy!  Give Jesus a birthday hug for me.  Longing for you this morning, Mama

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Cookie decorating with Kyla (one of many fun friends/family who visited us this past week)!
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It looks like you’ve been getting visits from friends too…the cars are multiplying. 😉
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You had a place tonight at the tamale table.

P.S.  I love you.

Where Are You Christmas?

I just heard Faith Hill’s “Where Are You Christmas?” on the radio.  I’m not sure I ever really listened to the words of that song before…what a beautiful song.  I think I just adopted it as my theme song this holiday season…”My world is changing.  I’m rearranging.”  Yep, that kind of sums up where my heart is today.  But how ALS and Rudy’s absence is changing this Christmas and our family’s world in general is only magnified by what has been going on in our community for the past 12 days.

The Thomas Fire that broke out in Ventura County a week ago last Monday made it’s way to Santa Barbara County on Sunday and is snaking it’s way up through the south county communities of Carpenteria, Summerland and now Montecito.  We aren’t in any fire danger here in Goleta but Santa Barbara and Goleta have been blanketed with smoke and ash since the fire broke out which has severely impacted our community’s day to day.  Our local schools closed last Thursday and won’t reopen until after New Years, many businesses have shortened their work days significantly (if not closed all together) and we’re all donning attractive face masks when out and about.  It has been heartbreaking to see many we know affected by this massive fire (currently the 4th largest wild fire in CA history) and it will continue as containment is not expected before January 7th!

So far, the festive holiday events we typically participate in have all been cancelled or postponed…certainly adding to the question “Where are you Christmas?”.  It isn’t feeling particularly festive or Christmasy around here.  We were doing a great job making the most of the situation the first few days…Olivia had some friends over to bake Christmas cookies, we’ve watched a crazy number of Christmas movies and got creative with some crafts but the negative impact is starting to surface.  There is just so much to be depressed about and peppy, positive Patsy is fading.  Thankfully the house is filling up as Max arrived home on Wednesday, Wilson comes home later today and Aunt Andi flies in from the east coast this afternoon for a quick visit!!  That’ll switch things up and lighten the load considerably!  It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us is…always.

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Don we now our gay apparel.
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We woke up Sunday morning to a dusting of what looked like snow…but it was ash.
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Olivia and I decided to head south to escape the poor air quality for a few hours and do some Christmas shopping. We went from this…
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…to this in little over an hour!
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I’m horrible at taking fire pictures but we passed by the fire line on the ridge over Summerland on our way home later that day.  The fire fighters are doing an AMAZING job keeping the line contained to the ridge…so impressive and inspiring.
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Olivia and some friends headed down to the fair grounds to help with the animals that had to be evacuated from nearby ranches and the girls were given the fun job of comforting the animals! I’m not sure who enjoyed it more. 😉
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‘Went to Kyle’s Kitchen for some comfort food and found that Rudy continues to be “present” spreading his trademark Christmas cheer! Thank you Ferro Family for including Rudy in your decorating fun.

I’m particularly thankful, now, that the MOHD Squad got to go down to San Diego the weekend before the fire broke out to see Max perform in his PLNU concert choir Christmas show.  The variety of numbers performed made the show fun, festive and quite moving…it was the perfect way to kick off THIS Christmas especially.  I captured their rendition of my favorite carol…

Merry, Merry, MERRY Christmas dear ones.  May these last few days leading up to Christmas be filled with GREAT JOY, SUSTAINING GRACE, PERFECT PEACE and a STRENGTH of spirit and of mind that is truly beyond what the natural world can muster!  Thank you for your friendship and love.

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Kinda feels like this bears repeating…”It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us isalways.”

Pros and Cons

It seems most of my head space these days is spent praying about and contemplating the pros and cons of potential options available to me.  The reality is that there are a ton of theories out there but very few proven options.

Western/Conventional medicine can offer me two options at this point:

  1. Radicava – a medication that was FDA approved in the US in August.  Radicava has been proven to slow the progression of symptoms in some cases of ALS! (PRO)   It is administered through intravenous infusions -much like chemotherapy…(two weeks on, two weeks off initially and then 10 days on within two week period, two weeks off each month thereafter)…(kind of a CON ’cause it’s pretty consuming).
  2. Stem cell treatment through a clinical trial at UC Irivine.  I applied to be a part of the study several weeks ago and they are conducting applicant interviews now.  On the surface, it sounds quite hopeful with participants in previous trial phases reporting not only a slowing of symptom progression but also reversal of symptoms!  (Super Big PRO)  To participate in the study, however, I must commit to the 11 month study and NOT take Radicava.  Risky because my functionality could change a great deal in 11 months and I’m not guaranteed the stem cell treatment as half the test group will be given a placebo.  (CON)  I’m simplifying it but that’s basically the gist.  I don’t mind being a lab rat but is the risk of diminished functionality, physical effort, time away from family, etc, etc worth what I’d be getting (if anything) from the study?  Hard to say.

Alternative medicine can offer me a variety of treatments to help manage the disease…not bad just time consuming and often expensive.  (PROS and CONS to them all)

The challenge is to find a comfortable balance between getting caught up in the hysteria of all the proven and theoretical options out there AND getting caught up in a fatalistic attitude.  Both extremes are paralyzing…finding a balance requires a conscious (and ongoing) effort to focus.   It’s exhausting and, to be perfectly honest, my heart isn’t in it.

What I’m deliberating day in and day out are details related to disease management.  For 8 1/2 years, our family submitted to an intricate system of disease management with Rudy and as I wrestle with the details of my disease and cry out to God for help, I’m discovering I don’t want to submit to disease management anymore.  I don’t want to “treat symptoms”.  I want a system overhaul…I want a system reboot…I want my nervous system to resurrect.

Let me be clear.  I’m very grateful for conventional medicine, current technologies and the research & resources donated to get us where we are today in ALS treatment.  I’m also very respectful of what alternative medicine offers people like me.  I appreciate it, I’m doing due diligence in all areas and I’m engaging in the therapies that seem to fit me best but what I really want is for God to heal me this side of heaven.  I’m sure some of you are saying “well, duh!” but it’s an involved and thoughtful process for me and the subject of miraculous healing could be a blog post of it’s own.  I’ll share my thoughts on it sometime but for now I’ll just say I’m doing my due diligence in this area as well and seeking God for wisdom to truly understand what my options are and for discernment in determining what is best for me and my family.  Will you please join me in prayers for wisdom and discernment in my process as well as the motivation to put on my big girl pants and do the necessary legwork?  Thank you dear friends!  ‘Grateful for YOU!!!