Quo Vadimus, Take Two

I've not had much to write here in this space...not because there's not much on my mind, but because there's just not much that can be shared in so public a venue at the moment.  Facebook is "safer" because I can regulate which friends see which updates.  It's just necessary right now.

What I can say is this:

Mark's company has 46 days left on their contract here.  

And we have no idea where he will be working in 46 days.  We know the girls and I will probably be back home in the Old Dominion since it's unlikely we can have the house prepped and rented in 46 days.  But we have no idea where Mark will be.  And we've no idea when we'll be able to join him.

I'd say we have some sense...but if I am being honest with myself, really we don't.  Every day it seems like another possibility presents itself.  And every day it seems like one of the possibilities falls away.  In the end, it looks like we will be coming down to the wire... It is a recurring theme in our lives and one, honestly, which I would like to put to bed for a long, long time.

In 2003 we made a very quick move to Maryland and in 2005 we turned around and came back.  In both scenarios it was a matter of stay or go.  There was no thisaway? or thataway?  ...There was no worrying about having a job at all.  Only stay?  Or go?

But in 2004, and again in 2007, and again this past fall, and now...now...we've done, and are doing, this crazy, somewhat frenzied, and very daily hunting the internet / networking with the friends and former colleagues / submitting the resumes...  And this is very time consuming and tiring stuff!

And It is completely the opposite of how I grew up!

(My dad had a job with one a company when I was born...and he worked for them up until he was forced into early retirement about the time I was graduating from college and getting married.  I was  brought home from the hospital to the very house where my parents still live today, more than forty-one years later.  I was not prepared for this, plain and simple.)

Wondering what's next, I am reminded of this photo I snapped of Mark at the James River some time ago and later posted in November at a similar point in time.

I wrote then:

"But it's the question we ponder, quietly, even as we pack up all of Mark's life into boxes, months before we pack the rest of our lives into boxes, and prepare to move him into his(/our) transitional housing and wait (and wait and wait) to hear what's going to happen next...surely a contract extension, but then what?  A five year contract in Maryland?  Or is this but a stepping stone?  Another contract in another state?  Will we ever come back "home" to Virginia?"

And now we now: 

This was but a stepping stone...

On the one hand, there's a slight sense of hopelessness.  A bit of a lump in the throat.  A little catch in the voice when trying to talk about all of it.  We're at this place where everything just drops off...  At least when we focus too much on the little bit of the picture we can actually see.

Yet in the grander scheme of things...in 46 days we'll probably all still be here - as in here on earth, living this life.

Probably...

Which comes to mind because the above photo is a reminder to our family of a deeper story.  For on those steps, in the summer of 2010, we sat with Mark's colleagues and boss (of more than a decade) and his family and we talked and laughed and generally "made merry" one evening as the sun set...blissfully ignorant of what lay ahead.  Even now I wish we'd stayed just a little longer that night.  Lingered a bit more.  Laughed.  Loved.  A bit longer.

Because too few months later, in December of 2010, we gathered with those same colleagues and that same boss and his family...Minus one.  We gathered in a church to say goodbye to his boss's wife, a lovely woman in every sense, beloved by many (including us), after a short and painful bout of cancer.

Yes, we'll probably still be a family of four in 46 days.  

But what if even that were to change?

(Blissful ignorance is...bliss, is it not?)

What then?

Quo Vadimus?

Where are we going?

We don't know.

Yet we do.

Ultimately...

"But as it is, they desire a better country, 

that is, a heavenly one. 

Therefore God is not ashamed to be called their God, 

for he has prepared for them a city."

Hebrews 11:16

And that makes all the difference in the world...

The Nightmare That Was Our Geneticist Appointment

or...

Reason 3,798 that I. Hate. Doctors.

(Except our pediatricians.)

This week the girls saw the same geneticist who diagnosed me (HEDS) in February. Not only do I not trust her diagnosis of either of them, I no longer trust her diagnosis of me, either.

I am in total agreement that the daughter who was diagnosed this week (with HEDS) and I both have genetic connective tissue disorders, but I don't trust that this geneticist knows gctd's well enough to distinguish between them. I also don't believe that Lulu shows "no signs" of a genetic connective tissue disorder.

The geneticist's clinical skills are lacking, her knowledge of gctd's is lacking, and her willingness to investigate further is non-existent.  When I described the appointment to our pediatrician last night, she said that in all of her years of practicing medicine and sending people out to geneticists she has never heard of such an abysmal experience.  (Lucky us. *Sigh*)

From the start of the appointment I pointed out to the geneticist that in the past 2 months we've discovered a history of hypermobility on Mark's side of the family as well. I knew he showed some slight hypermobility, or at least flexibility, in some joints, but it didn't seem potentially clinically significant...until we combined the information with what we have discovered. At 71, even a month or so past knee surgery on an extremely arthritic knee, my mother-in-law bends straight-legged to put palms on the floor even more easily than I do. Her hands are nearly as flexible as mine are at 41, and I have been told I have particularly flexible hands for a 41 year old. Her sister, at 68, can to this day almost completely dislocate her shoulder, on purpose, and put it back with no pain. She was extremely active at least the first half to two-thirds of her life, and though nearly all of her worst injuries were while doing things like running and rock climbing, they also involved hyperextension - a knee, her back, etc.

I thought it was of great importance to take this, as well as other some other possible hereditary conditions/symptoms on that side into consideration, and I told the geneticist that in almost those exact words at the very beginning to the appointment. In my mind this raised the possibility that one or both of the girls could have a different connective tissue disorder *or* HEDS + Another CTD, and I expressed this concern from the outset.

Now...what I didn't say was that I was especially concerned about one particular disease/disorder because of the high frequency hearing loss on Mark's side. At 41, Mark has been losing his high frequencies for several years, and he states his mom was losing hers by his age.  She states it was 55, but he sticks to his guns on that one and says at least he noticed it much earlier than that.  His aunt states the latest she started losing hers was 50, but it really could have been well before.  Admittedly, Mark has the whole drum-playing, heavy-metal-listening history to take into account...but, too, not all previously drum-playing heavy-metal-listening teens start losing their hearing in their thirties. So the fact there's some degree of hypermobility + high frequency hearing loss in several first degree family members needs to at least be investigated in light of at least one other family member with hypermobility.

But I didn't want to just mention this specific disorder and simply have it ruled out.  Rather, I expected a doctor would take all of the information available to her and use her clinical skills to consider other possibilities...  You know - go through the list of differential diagnoses and exclude everything else before diagnosing something which is based nearly entirely on clinical presentation AND family history... I couldn't have been more wrong!


This geneticist never took the medical history for my husband or his side of the family. Ev. er. Not voluntarily, anyway...

Despite my insistence that it was probably important, she never asked for any of the information! At the end of the (very rushed) appointment (in which they pushed us out the door in less than an hour and a half even though we had 2 hour long appointments scheduled), I told them I was going to give it to them even though they did not want it and handed them a the typed history I had for my side and his side of the family. If I hadn't done so, they would have no record whatsoever of the other half of my daughters' genetic history.

THEN...without knowing my husband's medical history or that of his family...she diagnoses one daughter and not the other with HEDS. Completely understood - to some extent, that is. (Ignoring the fact that she hasn't ruled out anything from his side of the family since she doesn't have any idea what's going on there.) And I told her so - that I didn't necessarily expect a diagnosis for Lulu at this point in time.

I knew going in that Lu (13) presents more like I did at her age, while Moo (10) is far more hypermobile than me back then. (I had so many other "issues", like my oldest, but I don't remember being overly flexible back then though I score 8/9 on Beighton now.) I knew Lu's Beighton score was low, but as I told the geneticist, I wanted my oldest seen, too, because I thought given her presentation (scoliosis, flexible flat feet, chronic joint pain most of her life, sandal toe gap, gastrointestinal issues most of her life, downward slanting eyes and myopia which worsens yearly, chronic fatigue and lack of stamina, frequent sprains/twisting joints) plus my diagnosis, there was a possibility she would meet criteria for diagnosis, too...perhaps with the Brighton score?

Now...had the doctor said Lu just didn't meet the criteria, I'd honor that. If she said she preferred to rely only on Beighton for whatever reason, I could respect that, too. Instead what she said was that "they [were] not familiar with Brighton.

Really?!?!? I mean, I appreciate her honesty - but Seriously? It's been around since 2000 and she's never even *heard* of it?!?! When I told our pediatrician last night about it, even she knew about it (didn't expect her to at all!!) and she was flabbergasted the geneticist did not. If she's never even heard of the Brighton - what ELSE doesn't she know?!?! (The pediatrician said that, too.)

When I started to describe some of what's on Brighton to her, she cut me off and said "A lot of people have myopia..."

Sure they do! But how many have progressive myopia + downward slanting eyes + scoliosis + flexible flat feet + chronic joint pain most of her life + sandal toe gap + gastrointestinal issues most of her life + chronic fatigue and lack of stamina + frequent sprains/twisting joints PLUS TWO IMMEDIATE FAMILY MEMBERS DIAGNOSED WITH A GENETIC CONNECTIVE TISSUE DISORDER?!

If she doesn't meet criteria, she doesn't meet criteria. I'm fine with that. *Seriously* But there's more going on here than coincidental issues and even our pediatrician who finally recognized what was going on in our family realized that. And it's *not* what the geneticist would suggest next... Read on...

THEN...she excuses the girls from the room to ask if we've ever considered that Lulu might have...


Aspergers.

What?!?!? 

With no offense to anyone who has it or has a family member with it, I about laid into her at that point.

Not because of Aspergers itself, but because of how off-base this doctor is.

But I remained calm. And very kindly, sort of, told her she was crazy  very much mistaken.

I'll admit, my girl has her...issues. And yes, she's somewhere on the ADHD...Aspergers spectrum. But Aspergers-Aspergers? No! Not Lulu!

And when I asked our pediatrician about it last night, she said she has *never* seen Lu that way. "Bright and quirky, maybe. But a lot of bright kids are quirky..." is what she told me. She also called the dr's suggestion a "snap judgment" and essentially said it was inconceivable that any doctor would make such a judgment, especially given such a distractible, high-stress situation. Like the blind man touching just the elephant's tail - she only saw the tail and not the whole picture. (Our ped used that exact analogy.)

And I think she made the judgment early on, because when we left Lulu burst into tears and wanted to know why the doctor had treated her differently and why she asked her and the youngest different questions and why she looked at her differently. (13 + hormones + stress + crazy doctor lady = bad combination)

There were four of us in the tiny exam room - genetic counselor, doctor, and my girls - and the dr did the physical exam there *while* the genetic counselor took their histories from me. So...the dr wasn't even listening to the histories...and my kids and I (even on my Adderall!) were horribly distracted (and stressed over the whole issue anyway). Apparently Lu's lack of "appropriate eye contact" (Can you say distracted? (We've regularly discussed her attention issues and how we agreed to proceed with our ped's and it must be in her records!)...and she's a stressed-out, awkward, middle school kid, to boot) and "flat voice" (um...she's always had a nasal voice and was more congested because of allergies being back in Virginia and always sounds like that when her allergies are flaring, especially when she's tired) led the dr to believe she has Aspergers.

Apparently, Aspergers would explain Lulu's clumsiness...


REALLY?!?!

Gee...that seems like more than a stretch to me - more like a leap!...to say it was undiagnosed Aspergers at 13 (with *nothing* in her medical records to indicate such) instead of say, maybe?, a too mild to diagnose yet connective tissue disorder that both her mom and sister have! 

The real kicker there is, of course, that Mark's worked in the mental health field for nearly 2 decades now and been a licensed mental health professional for nearly 1 decade. His entire career is devoted to working with people who, among other issues, have diagnoses with disorders like Aspergers. While we could possibly be in denial about a diagnosis like that for a little while...certainly not for 13 years! Especially not surrounded by other people in the mental health field all those years!!!

And the last straw...

Finally when, at the end of the appointment, I again expressed concern that all of the bases hadn't been covered because the geneticist had not excluded other connective tissue disorders that might be lurking on my husband's side of the family, her reaction was utterly. ridiculous. She stated something to the extent of (gosh I wish I could remember the exact words!):

...There are 20 some such conditions and she couldn't rule all of them out or look into all of them. 

As our pediatrician last night said:

"Why not?! That's why we sent you there!" 

Yeah...

We'll be seeing someone else for second opinions.

And my pediatrician will be complaining to the Powers-That-Be once she has the geneticist's report in hand.

And I am seriously considering a complaint to the Board of Medicine, too.

There's A Light At The End Of This Tunnel

Well, I've just been a bit self-absorbed, haven't I?!

To an extent a lot of what I've been going through in my heart and head have been natural and even necessary.  There's been grieving with this Move That Still Hasn't Quite Happened.  Then there's been the whole process of grieving with the diagnosis of a genetic connective tissue disorder plus the realization both of my daughters almost surely have it, not to mention at the very least my mom - but probably quite a few extended family members as well.  And then there was the diagnosis of a dysfunctional autonomic nervous system, and the realization these issues will probably be with me (and my daughters) to some extent for the rest of our lives.

Grief is a roller coaster.  A process.  Definitely not linear.  Often messy.  And, since we still haven't actually moved anywhere and have learned we won't be moving permanently to Maryland...and since the nature of a chronic medical condition is chronic...I'm sure the ride's not completely over, either.

But we're definitely reaching a different place mentally and emotionally.

Moods are brighter here lately.  Most days.

Maybe it's more sunshine.  Maybe it's because Moo's (sometimes debilitating) neck pain is (mostly) relieved.  Maybe it's the medications I'm taking and that they are helping me to begin to renew my physical strength  (a little some days, immensely others).  Maybe it's because we see a light at the end of the tunnel;  We aren't quite sure where we'll be when we get out of the tunnel...but we know we're nearing it at least.

And maybe it's just the Grace of God.

Whatever it is, and it's probably a lot of Grace and little of everything else, yes, we're definitely reaching a turning point of sorts.

(Though I reserve the right to recant after the girls' geneticist appointment next week, because while we know they both surely have HEDS (and I realize there's a chance Lulu's symptoms are not manifesting enough to make her diagnosis definitive at this time, but we're still certain she has it), it will be a different thing to have the diagnosis actually made.)

(And while I'm reserving rights, I'll also reserve the right to recant once we actually know what's happening with Mark's job and in which state we'll land; At the moment we suspect Mark's company would be sending him to Indiana or Florida...  Either would (will?) be a new tunnel all its own.)

Anyway, the ups and downs, the anger, the depressed moods, the obsessiveness...they were all necessary to some extent to get us here.  What hasn't always been necessary though, perhaps, is sharing it "out loud" and openly here in this public space.  It is what it is now, though.  But I am truly sorry for anyone I have hurt in the process.

When I have written about some of our experiences, though, I haven't done so just to vent.  Sure, there are days when I probably do...  But I honestly try to be a little more careful than that.  And on the days I haven't been careful enough...that's what the delete button is for.

My heart's desire in inviting others into our crazy life of late is not for our own benefit.  Rather, if you  recognize a part you are playing in the life of others going through similar circumstances, my hope and prayer is that seeing our struggles might open your eyes and heart to their struggles and that it might spur you on to encourage them, to spur them on, and to even lighten their load if you can.

It's easier to write about some of our frustrations in this process from far away.  It's easier to write when, honestly, there's not a lot many of the people who know us can do for us in a physical sense.  There's just no potentially hidden expectation on my part that it will encourage such behavior towards us (which would only then make me feel guilty anyway).  I don't write to to manipulate.  I write to enlighten - for the sake of others.  Honestly.

And on the other hand...and since I'm the exact same way, I don't know why this surprises me...but it does:  The very people who have done the most for us worry that they have not done enough.  Please don't.  Worry, that is.  Think I might be speaking of you, I mean.  The messages - the encouragement - have always come just when we need them the most.  And when we think we needed them, and they didn't come...well, God was in that and truly, we still have a lot to learn about relying just upon Him and looking to Him when we are feeling quite desperate.

The latest we will be (temporarily) residing in Maryland is June 30th...plus maybe one more month.  We have no idea where we'll be when we come out on the other side, but we feel like we can see the light at the end of this particular tunnel.  And as I said on Facebook:

Deep, heartfelt thanks to each of you who has given a little hope to us and who has allowed us to share the weight of that load with you. 

"I thank my God in all my remembrance of you..." Philippians 1:3

POTSy Turvy, #2

Things I Hate About POTS:

#2  Its predictability:

As random and unpredictable as it can be, there are some things I know will likely take us all down a notch.  Or five.  Like heat.  Which means pretty much anything over somewhere around 74 degrees...

Predicted high today somewhere in the eighties; *so* glad I am not in Virginia today!

*So* thankful for air conditioning!

POTSy Turvy, #1

Things I Hate About POTS:

#1  Its utter randomness and unpredictability:

One day can be very much like the prior one weather wise.  Same meds the night before.  Etc.  Etc.  Yet one day can be a *great* day (for me, anyway) and the next...not so much.  One day I am busy all day long and the next I wake up at 6:30 feeling nauseated, head to the kitchen for the Gatorade, and end up sitting on the floor hoping I don't throw up or pass out sitting up.

(Thankfully, for the moment, today seems to be somewhere in between.)

It's So Late At Night I Can *Not* Come Up With A Fancy, Cute, or Quirky Title For This Post

(Stick with me...this isn't all a rant.  I promise.)

So...all these trials and all these ups and downs and all of these changes...what with the health issues and the job issues and the leaving - but not quite leaving yet - our home of the past seven (has it really been seven since we moved back to Virginia?) years...have really been frustrating in that...well...wow...we've really had a glimpse into on whose lives we've made an impact...or...um...apparently *haven't*.    (The answer to that is:  Not. Many.)  Or at least enough of an impact that some folks would take even a minute to respond to an e-mail update even if they didn't have the time or energy to contact us otherwise. Honestly, it's not just frustrating...it's downright sad.  Disheartening.  Demoralizing, even.

Mark drove down to Virginia a couple of weekends ago to take care of just a couple of things at the house.  And in that time, one of his errands involved some work on his car - which he would only entrust to "our" (cheap) country mechanic.  The fascinating thing was that, though we've not seen him since December when my van needed some repairs, the man remembered our entire story.  He asked Mark how long he was in town, whether he knew yet when he was moving, or to where...  What fascinated us was that this is a man we see - if we're having a "good" year - only a couple of times a year for state inspections.  (Though, honestly, we've been seeing him way more regularly than that the past year or so.)  But he remembered what we'd told him.  Months ago!

That shouldn't be so fascinating... I mean, I wouldn't expect it of him.  But it shouldn't seem so extraordinary, either.  But the contrast between our experience with this gentleman and our experience with other people is what was so striking!  It's been so odd to share our circumstances and send e-mail updates, etc. and have people we've seen more regularly for years not be able to retain the information.  Honestly, it's been a bit bizarre!  How strange to think that some people - a whole group of them! - can't recall what we've shared about our lives, yet our mechanic can!

I shouldn't speak for other people's hearts or minds or motives.  And when it comes down to it, I have no idea why so many people aren't retaining pertinent details of our lives.  And when it comes down to it, I have no idea why so many people have not replied to e-mails (though now it would be because I've just stopped bothering to send the e-mails at all...) or why so many people have not done anything on their end to attempt to maintain contact these many months.  And when it comes down to it, I have no idea why other people haven't attempted to be in better contact when we're in closer proximity to some of them, at least for a short time.  I just don't know!

I've made assumptions...we've made assumptions...and I guess that's wrong of me...of us.  But we have assumed, for right or for wrong, that we simply never meant enough to any of those people for them to take the time - or to make the time - even to hit "reply" when they read their e-mail.  Though we adults, at least, understand that to some extent - the "keeping up with people" takes mental and emotional energy, and we've not had a lot of that.  But the whole thing where people can't even remember what we've told them?  That strikes us as they just weren't even paying attention when we spoke.  Like we just didn't matter enough for them to really listen to us.  And it's enough people that we're kind of shaking our heads and asking ourselves what on earth did we do wrong?  (Because we're the kind of people who generally assume *we* must have messed up along the way - well, three out of four of us are, anyway.)  But whatever we did *wrong*...at least we - apparently - did it "right" with our old country mechanic!

But...the kind of cool thing - for me, anyway - has been some of the relationships that have grown  even in all of our mess.  I don't think any were friendships I expected to be nurturing during this time - mostly because before I started spending so much time *horizontal*, I expected to spend a lot less time attached to the computer.  But they've been Godsends, to be sure!  Though most of the friendships have been online - most of them also began, at some point in time, with actual "in real time" friendships or acquaintances.  

The one relationship that neither started online nor has been primarily maintained online has been that of my sister-in-law.  Truth be told, if we end up having to leave Maryland, she will be one of the reasons it will be hardest (for me) to leave.  Sure, there's the phone (but I'm not a phone person, really) and e-mail and internet and maybe, just maybe, we won't have to go as far as Florida or Maine...but there's something comforting about knowing someone's just a half hour away even if you don't get to see them perhaps as often as you might enjoy...

Then there's a friendship that, oddly enough, *began* online but then became "in real life" and has ebbed and flowed and been a mainstay for (gosh!) 9 years now...which is kind of a record for me.  (See, I said I understand not having the energy to maintain relationships.)  I met my best friend in an online forum for Christian women when our girls were just babies.  We realized we lived close, our girls were close in age (*really* close!  Moo and her best buddy are only 19 days apart!), and besides being Christians, we were both planning to homeschool.  And then in about 6 months, we moved away (to Maryland - the first time)!  Though I haven't had a lot of energy for phone conversations lately, it's been such a blessing that our *girls* are carrying on the torch and making phone calls and making plans for how they can stay in touch better.  But it's such a blessing to know I can pick up the phone at any time and pick up with this one friend right where we left off.  

Ans then there are the friendships that have blossomed a bit from far away...just because of this little box.  I've had the chance to get to know one lady from our college days who I didn't really know much at all.  We have so little in common as far as lifestyles, etc. (Guess whose is most exciting? (Hint: not. mine.)  I've enjoyed many foreign countries vicariously through her!)  But she's just one of the kindest people you could ever meet and deep down I think we may just be kindred spirits in a lot of ways.  I'm just so grateful for her regular encouragement on Facebook!

And then there's another college friend I've had a chance to reconnect with - one whose lifestyle is a lot like mine except that hers is 2.5 times crazier - though really I suspect that's minimizing things, because really when you add more children into the mix I rather think the craziness is probably more likely exponential.  And then she's had some health issues that make my own look rather small and puny in comparison.  Not that we're supposed to compare.  But it does put my own life into perspective some times.  Anyway, she too has been a great encouragement these past many months.  It's been a real joy to be able to connect with her!

You know, in college I came to the party late as far as finding friends.  I experienced a conversion in the beginning of my junior year and in many ways it was a "Road of Damascus" kind of change.    I regularly had people approach me for months to ask what on earth had happened because I was just that. different.  Seriously.  (We need not go into details since my daughter occasionally reads what I write here.)  But that meant I was a completely different person with completely different interests than I was for the first two years of college - which suddenly made relationships... different.  And what I found was that two plus years "in", most of the people I knew - and was getting to know - had  their circles and friendships and groups pretty deeply entrenched, and honestly there just wasn't room for someone new.  With that in mind, it has definitely not been lost on me that the lady up ^there^ I just wrote about (whose life is like mine, but in high definition) was one of the very people I so very much wanted to get to know better back then - some twenty-plus years ago!  The problem with God's timing is never God's timing...it's how impatient *I* am about waiting for it!

It's always striking how God uses our circumstances to forge bonds.  There's a lady who I've just adored since I first met her several years back.  As different as our lives look, we share so many similarities and even before I met her I felt a certain kinship with her.  She's one of the few I can see with some regularity - or could before the Move That Hasn't Happened Yet.  Anyway, she's someone I wish I could live next door to and just soak up all of her sweetness all the time.  But between her health issues and mine, we never got to see each other much even before the MTHHY.  But I'm thankful for Facebook, again, in that it's been a way to connect with her more and more - when we're in town and not.

There are others, I'm sure, that I'm forgetting...it is really, really ridiculously late after all.  But I have been truly blessed with and by these ladies - I am truly blessed to call them each friend.  Kimberly, Susan, Karen, Andrea, Elsie...my most heartfelt thanks!  This crazy ride of ours isn't over yet, I know...but I really don't know how I would have come this far on it so far without all of you!

Beautiful People

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen." 

~ Elisabeth Kübler-Ross

Hence, when you ask God to do, to *allow*, whatever is necessary in the lives of your daughters to fulfill His ultimate purposes...and then find that what *is*, apparently, necessary involves defeat, suffering, struggle, and loss - sometimes on a very daily basis - you need not wish you'd prayed a different prayer.

I knew it wasn't a "safe" prayer when I began praying it so many year ago.

Admittedly, I prayed with trepidation in the beginning.  

Because in the beginning, 

I had forgotten:

that 

with defeat, 
with suffering, 
struggle, 
and loss

 ~ with all of it ~

comes Grace. 

Abundant

Abounding

Abiding 

*Grace*

Even in this - *all* of this: these physical disorders, the stress, the uncertainty - our two girls are finding their way out of the depths.  


And they are finding their way out of the depths with - and by - the Grace of God.

My grace is enough; it's all you need.
My strength comes into its own in your weakness.
Once I heard that, I was glad to let it happen.
I quit focusing on the handicap and began appreciating the gift.
It was a case of Christ's strength moving in on my weakness.

2 Corinthians 12:9, THE MESSAGE

*Not* that they've arrived.

Like the Skin Horse explained when Velveteen Rabbit asked if Being Real happens all at once, like being wound up, or if it happens bit by bit:

"It doesn't happen all at once. You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."

Yes, these two, entrusted to our care for just this brief time here -

These two, already loose in the joints and even a bit shabby from time to time -

They are *Becoming*.

Our girls are Becoming *Real*.

Becoming *Beautiful*.

Bit by bit.

And they know - too well some days - the answer to Velveteen Rabbit's query, 

"Does it hurt?"

Paul answered it so many years before:

"All around us we observe a pregnant creation. The difficult times of pain throughout the world are simply birth pangs. But it's not only around us; it's within us. The Spirit of God is arousing us within. We're also feeling the birth pangs. These sterile and barren bodies of ours are yearning for full deliverance. That is why waiting does not diminish us, any more than waiting diminishes a pregnant mother. We are enlarged in the waiting. We, of course, don't see what is enlarging us. But the longer we wait, the larger we become, and the more joyful our expectancy." 

Romans 8:22-25, THE MESSAGE

They feel the difficult times of pain throughout the world, 

beginning in their own small world.

And in their waiting they are *Becoming*.

These daughters of ours 


- these daughters of *God* -

They are Becoming 


*Enlarged*

*Expectant*

*Joyful*

Oh, it may not always look like it!

We have our days - *many* days - when we can't quite *see* that this is what's happening.

No.

Some days not at all!

Sometimes it's so slow, in fact, we're sure it's *not*.

But it is.

As the Skin Horse said:

"It takes a long time."

And God is with them - with us - to the end.  Completing what He started:

"God knew what he was doing from the very beginning. He decided from the outset to shape the lives of those who love him along the same lines as the life of his Son. The Son stands first in the line of humanity he restored. We see the original and intended shape of our lives there in him. After God made that decision of what his children should be like, he followed it up by calling people by name. After he called them by name, he set them on a solid basis with himself. And then, after getting them established, he stayed with them to the end, gloriously completing what he had begun." 

Romans 8:29-30, THE MESSAGE

He has called them by name, our girls.

*His* girls.

And they are becoming His.

*Wholly* His.

Bit by bit.


And they will be

*His*

*Beautiful*

*Real*

*Enlarged*

*Expectant*

*Joyful*

And all that's happened in between
- the defeat, the suffering, the struggle, the loss -

"...these things don't matter at all, 

because once you are Real you can't be ugly, 

except to people who don't understand."


And they will be

Beautiful

People.

What God Wants Most...On Being Honest With and Before Him

‎"Now, you know prayer is asking for something, and sometimes you get a yes answer and sometimes you get a no answer...And just like everything else you might get angry when you get a no answer. But God respects your feelings, and God can take your anger as well as your happiness. So whatever you have to offer God through prayer - it seems to me - is a great gift. Because the thing God wants most of all is a relationship with you..."
~ Mister [Fred] Rogers,
in response to a child's question,
as recorded in "The Simple Faith of Mister Rogers" by Ann Hollingsworth

Because some days I'm pretty much still like a little child...

And some days I'm, honestly, just plain angry.

And some days I don't think I can take another. stinking. "No."

And some days I'm just plain tired of acting as if everything is hunky-dory
and like I have the faith of Job because that's what other Christians expect...

...lest I be chastised or
-worse-
abandoned
by those-who-too-often-eat-their-own-for-breakfast.
(When I pretty much feel like I already was long ago, anyway.)
(Abandoned, that is...not eaten-by-my-own.)
(Though I've had a few of those moments, too.)

So I am just going to the Land Of Make Believe Which Is Inside My Head

and imagining Mister Rogers saying all that to me, personally...

...because even at 41, some days I need to be reminded that God respects my feelings

(having created emotions and endowed me with them)

and that He can take even my anger

just as I can take even my children's anger

when they are likewise heartbroken 
and mad

and *afraid*.

And maybe

just *maybe*

all those times we are commanded 
*Do Not Fear*

in the Bible...
It was never actually so much

about *commanding* us to do 
- or not - 
one. more. thing.

as much as it was
and is
about 
*comforting* 
our fearful, frail and trembling

and oh-so-very-human hearts and minds...

The health services contract was *not* awarded to Mark's company. The mental health services contract winner has not yet been announced. It's all conjecture, but the suspicion is they won't be awarded that one, either.

We are...full of emotions. Few of them, at least mine, are of the Faith-Like-Job variety. They are raw. They are...what they are.  Honestly...*right now*...they are a bit ugly.  Maybe even more than "a bit."

We've been at this waiting game not just for months, but for years.  We'd been waiting on all this since 2009.  We lost the opportunity, we thought.  Then we "got it back."  And now in some *many* ways, at least for me, it feels as if it was tauntingly dangled before us and then snatched back out of our hands just when we already felt like we couldn't go on for another minute.

The reality of my emotions is surely not easy for some well-meaning Christians to hear; I know this from experience.

Yet, I have come to the conclusion that by not expressing our *real* emotions more often - even when we are, frankly, emoting like a 5 year old - we do one another a great disservice.

But this honest emoting...this is *not*  5 year old temper-tantrum-throwing 

as much as it is groaning in abject despair and helplessness and crying out to God: 

"Where *ARE* You in all this?

And 

*When* are You going to make an appearance? 

And 

Can't. You. Please. Make. It. Soon. Before. I. Collapse???"

This not-knowing-where we are settling down for another month or more...

acknowledging that *now* it could be even on the other side of the country...

when my health...

when our girls' health...

is at (nearly) an all-time *low*...

and some of the best doctors for our very health issues are right *here*...

where we (now) *aren't* going to be...

when the not-getting-any-younger parents/grandparents are right *here*...

where we (now) *aren't* going to be...

and avoiding too much travel is one of the very "life adjustments" 

that needs to be made for those very health issues...

when I already felt like there was just no way I could take. another. minute. of. waiting...

It all just seems like Much. Too. Much.

And I have come to accept, with thanks to Mister Rogers, that God *Can. Handle.* my despair and my helplessness and my frantic cry of:

"Where *ARE* You in all this?

And 

*When* are You going to make an appearance? 

And 

Can't. You. Please. Make. It. Soon. Before. I. Collapse???"

(Even if it makes brothers and sisters in Christ uncomfortable and they *can't* handle it.)

Because I have invited Him into this despairing and helpless and hopeless and frantic place.

And here we will commune, He and I.

Here we will wrestle...

...or here, *I* will wrestle anyway.

And He will be.

He will be all that He has ever been.

He will be all that He will ever be.

It will not be pretty.

Not for me:

My tears will spill over.
My mascara will run.

My anger will spill forth.

My lack of faith will show.

But

We...

- He and I -

We will commune...

As we always do.

And He will comfort...

As He always does.

And always will.

If I never fear...

If I never despair...

If I never suffer...

What need have I of His comfort?

"I, even I, am He that comforts you..."

Isaiah 51:12

He will meet me here 
because what my God wants *most* is relationship with me.

We'll be trudging through some muck tonight...
It is all I have to offer Him.

But it is enough.

Because *He* is enough.

My Daddy will take my hand and 
lead me through the scary 
and sad - and even mad - places.

Because this is what He does.

And I think it's high time we stopped pretending 

the scary and sad 

- and even mad - 

places don't exist.

(or worse, proclaim that they *shouldn't*)

Because when we ignore them,
or try to ignore them,
 we miss out on the opportunity to have Him hold our hands 

- and our hearts - 

through each and every one.

"God respects your feelings, and God can take your anger as well as your happiness...Because the thing God wants most of all is a relationship with you..."

Don't be afraid to be honest with - and before - our Heavenly Daddy.

On Becoming A Mister Rogers Kind Of Person

I have been living in a constant state of physical hyperarousal - a constant state of "Fight or Flight."

Not because we are living between two states.  Not because we don't know where Mark will be working after June 30th.  And not because we're currently operating on a budget that exceeds our income and keep having more and more bills piled on top.

No, not *because* of any of that.  Though there is all of *that*, too.

The hyperarousal goes back years and years.
As far back as I can remember.

At times it is better than others.
At times, far worse.

It is not *because* I am anxious.
Rather, the physical arousal causes the anxiety.

It is not because I *like* a life full of the rush of adrenaline.
Rather, the adrenaline has, until this point, allowed me to live any amount of life at all.

But it is not the kind of life I would choose for myself.

I do *not* want to be a "Type A" person.

I *want* to be a Mister Rogers kind of person:
Quiet.
Slow.
Methodical.
Purposeful.
(Did I mention *Quiet*?)

But the faulty collagen my body produces has affected my vascular system for many years.

When you stand up...or when I stand up...when *anyone* stands up...because of the force of gravity, many ounces of blood start to head *downward*.  What happens in a person with a "normal" vascular system is this:  The veins constrict, the blood pressure rises, and the pulse rises *slightly* (10, or maybe even as much as 20, beats per minute) to push all of the blood back *up* so the organs that need that blood *get* that blood ~ *especially* the brain.

Not so in my body.

In *my* body, the veins do not constrict appropriately.  Not only does my blood pressure *not* rise, it *falls* - sometimes drastically so.  And so the blood pools in my legs.  In my abdomen.  In my hands if my arms are just hanging at my sides.  Organs do not get what they need.  And most especially my brain does not get what *it* needs, being at the highest point my body.

To compensate for this, my pulse quickens *drastically*.  My pulse increases 30-40, sometimes more, beats per minute as soon as I am standing.  That alone causes me all types of physical issues, including chronic fatigue, lack of physical stamina, and breathlessness doing just light housework or trying to carry on a conversation while taking the dog on a leisurely walk.

But even then, my brain does not always get the blood it needs and I become symptomatic for that, too:

"If you lose 3% of the blood flow to your brain, you'll know something's going on:
 It may be irritability, it may be a concentration problem.
"If you lose 5% of the blood flow, you may start having chest discomfort.
 You might get a headache.
"If you lose 8% of the bloodflow, you may get nauseated. You may get dizzy.
"If you lose 20% of the bloodflow to the brain, then your body's going to make you get
 flat...Passing out is a protective mechanism of the body."
~Dr. Charles Randy Thompson

I've spent most of my days in that 3-5% range, and too much time even in that 8% range.

This
(Irritability, Concentration problems, Headaches, Occasional nausea and dizziness)
does not lend itself well to being:
Quiet.
Slow.
Methodical.
Purposeful.
(Did I mention *Quiet*?)

Unless I am flat on my back with few to no disturbances.

And my life -
Homemaking, and
Homeschooling two tween daughters -
Does not lend itself well to being flat on my back with few to no disturbances.

And yet,

Quiet.
Slow.
Methodical.
Purposeful.
Are all very much what I
(and those two tween girls with likewise faulty vascular systems)
*NEED*
(whether they think it is or not and whether they want it or not).

(But they will have to come to this place in their own time and on their own terms.)

The difficulty is not in learning to accept this.
My body has given me little choice.
At 41 my body is exhausted from having to work. so. hard. just to be vertical.

I don't expect to be so tired for all my years to come now that I *know* this and now that I have doctors who *know* this and now that we are working to find the right medications and the right doses to *help* this.

But at 41, I am at peace (mostly) with the thought of living a methodical, purposeful, *slow* and *QUIET* life.

If only I could make the world around me and the people around me be as "at peace" with it as I am!

Fred Rogers liked to say:

"If we can learn to wait through the "natural silences" of life,
we will be surprised by what awaits us on the other side."

My physical condition - this faulty vascular system which is caused by faulty collagen (Ehlers-Danlos Syndrome) which have, together, caused this Dysautonomia: this Postural Orthostatic Tachycardia Syndrome - has given me more than my "fair share" of "natural silences".  Some of the silences I have embraced.  Most I have tried to rush through and ignore.  It has been a mistake not only for my physical body, but for my soul.  I have missed out on what was waiting "on the other side" because by the time I got there, I was too exhausted and over-taxed to enjoy it if I was even able to notice it.

I am determined not to do so anymore.

It may be more difficult for the people who live around me to accept my limitations - and to accept my acceptance of my limitations instead of fighting them - and to them I apologize in advance (though I suspect it will be easier now that we (my girls and me) have actual *diagnoses*).


(side note: If there is a lesson in this regard from my life I do wish others would learn though, it is this:  Please do not wait until a loved one has a *diagnosis* to accept their personal limitations.  Please do not assume that because doctors haven't *yet* discovered the organic *cause* of their limitations, that there isn't one and that it is therefore okay to push them (and push and push) when they say "I can't..."  Or "I'm at my limit."  Or "I'm just too tired."  In the end, no matter how physically disabled someone may be by any kind of condition - whether named or not - the greater disability lies in the inability to listen to someone and to accept their honest - and vulnerable - answers as true and as valid.)


There *are* times to sacrifice my personal comfort - and even my own health - for others.  It is a balancing act, to be sure.  But there are many more times to sacrifice by saying "Go on without me," I think, than to suffer severe physical consequences by pushing through and thus not being able to care for anyone else, including myself, for a long period of time afterward.

That balancing act takes the courage of conviction which I do not always have -
The courage to *be okay* with saying "no" - even when it makes people I love very angry - when I know, whether because my body won't allow it or for another reason, I simply cannot say "yes".
The courage to say "no" without being upset or angry when the people I love become upset or angry at us for saying "no"...when they want their desires to trump my actual greater good, or that of my children, who also deal with the same physical weaknesses.
Or...the courage to be upset or even angry when their desires trump my greater good and yet to choose to not bear a grudge.

That is the kind of courage I all too often lack...and is it any wonder, then, that I am in a very place in which I am most poised to learn it and to attain it?  It is a surrendering of self...on a whole different plane.

It has not been easy to "buck" the system of over-commitment to which our society seems to bow.  There is much we have lost - as a family, and as individuals - and missed out on.  And much more still to come, I am sure.

But I assuage my occasional remorse with "what awaits us on the other side."

I think Fred Rogers was speaking more finitely here, but it speaks volumes to me in regard to the infinite as well.

This life, these bodies - what with their faulty collagen and faulty vascular systems and low blood pressure and fast heart rates - are but temporal.  How much more is there for us to do, to see, to experience "on the other side" - without these encumbrances?

It is *okay* to be

Quiet.
Slow.
Methodical.
Purposeful.

We have *plenty* of time -
all of eternity, in fact.

In some ways, these faulty bodies are privilege...
They make us slow down.
If only we can choose to accept The Slowness.
If only we can choose to embrace The Quiet.

Topsy Turvy

I went back to the cardiologist today for the tilt table test and my follow-up appointment.

The tilt table was fairly awful...but not quite as bad as I expected it could be. And it didn't last long! For me, that is! The tech was hoping to get one more blood pressure reading before taking me down to a supine position, but I was shaking and sweating and feeling nauseated and so close to going down that when she asked if I felt like I was going to faint I had to say "yes"...so she laid me down again - and quickly.  The longest the test could have lasted was 45 minutes. I am pretty sure I didn't even make it 10!

According to my results, my POTS is in the "severe" range. (Amazing - considering I'd never even heard of it two months ago, and I've had these symptoms on and off for at least 3 decades and possibly all of my life!)  A heart rate over 120 in 5 minutes or less is considered "severe" and mine had already jumped to 129 in that period of time.

Well, he made me cry, Dr. A. did.  Poor man!  He said he makes more people cry in his office and he doesn't quite understand why!  I'm just not sure you can adequately explain it to anyone who hasn't experienced what so many of us with Dysautonomia have experienced - sometimes for months, sometimes years, and sometimes - for people like me - for decades.  But what *relief*!

From the first time I saw a doctor for palpitations when I drank coffee or took Sudafed at the age of 21 and was told - so astutely (note the sarcasm): "So don't drink coffee and don't take Sudafed then"  (Thanks, Doc.  Brilliant.) which was also the summer I almost lost my summer job at a blood bank before it even began because I nearly fainted (hmmmm....near fainting + palpitations...this sounds a bit familiar...)

To the time I told the neurologist I was waking up in the middle of the night sweating, gasping for air, with my heart pounding out of my chest  and couldn't get back to sleep and was told, "Sounds like a panic attack," to which my licensed counselor husband would have to respond, "Um.  No.  Can't be a true panic attack if she was *asleep*,"  (Stick to medicine, dear Doctor, please, and leave the psychological stuff to the mental health professionals) when what I was having were full blown POTS symptoms...but who knew?  (Sadly...*not* any of the doctors *I* ever saw!)

And all the times in between...diagnosed with anxiety...with depression...with "stress reactions" (and there have certainly been times I have been anxious and times I have been depressed...but if you go back far enough and look at which came first, the chicken or the egg: the dysautonomia/POTs or the anxiety/depression - Dysautonomia and POTS are the clear winners)...and sure I've been stressed, but what I have been most stressed about all these years is that I went to the doctors over and over with what I knew began as physical symptoms and they couldn't tell me what was wrong with me so they blamed it on my mental and emotional health...which basically became a self-fulfilling prophecy because I *knew* something wasn't right physically and no one (no doctor, anyway) would believe me and no one would spend the extra time hunting down any answers...so my mental and emotional health deteriorated as I was disbelieved, discarded, and - more than once - demeaned.

By the time you've done *that* for a couple of decades and then a cardiologist who specializes in Dysautonomia can describe what your entire day, morning to night - for nearly your entire life - looks like just based on heart rates and blood pressure readings, tells you it is *truly* a physical problem and has been all along *and* that he's going to find the best help for you to recover as much of your life as possible - well, you kind of turn into a puddle.

As soon as the pharmacy can get the medication in, I'll start a low dose of midodrine and once my current prescription of Adderall XR is gone, if I need it, I'll start a trial on a lower dose. Then back in a month to make adjustments, as necessary.  I'm (still cautiously) optimistic!

Dr. A. said families tend to have similar responses to medications, so if we can find the medication that works to control my symptoms, we will probably have found the right medication to work for the girls.  This is good news since, having seen her Holter and after hearing her days continue to worsen just two weeks since seeing us last, he said to bring Moo in again because if she can't do everything any other ten year old can do, she needs treatment.  (Yay!)  (Interestingly, Moo's holter monitor results looked so similar to mine the doctor had to keep going back and forth between results to remember which was which.  Genetics are a really wild thing.)

The best and most comforting thing, honestly, was to see actual pain and concern in Dr. A's eyes on hearing about how much time Moo spends lying down and the empathetic way in which he responded. With all the doctors I have seen and with all the doctors my girls have seen over all these years, I honestly do not think I have ever seen such a genuinely compassionate response. Perhaps there are actually a few gems left in the medical profession? (I can only hope and pray it's so...since the girls and I will need a lot of them a lot more than I ever realized any of us would over the course of our lifetimes!)

In other news, I was reminded how important it is to check in with our kids to get their understanding of what's happening in their world...

Tonight I asked Moo if she knew it wasn't her fault she felt so bad?  Her response of  "No" made my heart hurt.  So I went over again with her how because of the faulty collagen her veins don't work like "normal" veins and even though there are things we can all do to help ourselves *feel* better, we can't *change* our veins or the collagen or any other part of our bodies that don't work right because of the faulty collagen.  So nothing we did or do made us the way we are and therefore feeling so lousy is not our fault.  It just *is*.  (And sometimes it stinks, too.  But there is help for us and we can help ourselves, too.)

And I asked again, "Do you know it's not your fault that you feel so bad?"

The stinker's (rather delighted) response?

 "Yep.  It's *yours*.  Because they're *your* genes."

My response?

"Blame your grandmother."

*grin*