In the Throes of Chronic Disease

Disease?  I swear I'm not infectious...well...maybe I could pass this sniffle along to you, but that's not what I'm talking about here.  It's been just about a year now since I started down this road that is rheumatoid arthritis (RA), and like it or not I've got to come to terms with this word.  Illness?  Syndrome?  Disorder?  None sound particularly appealing or something I want to be associated with, but I guess I have no choice, right? 

I've had a few people lately ask me how I'm doing (thank you!) and it made me realize I haven't really given an update lately.  Not that you all need one, but I sometimes just need to get this stuff out.  Maybe more to help me come to terms with some of these thoughts rolling around in my head.  Truth is, I don't know how to respond to the question, "How are you doing?" with a concise, honest answer.  Quick and easy (and maybe what some people are hoping to hear), "I'm fine."  And that's true most of the time.  Long answer and the one some people really don't have time for (and please believe when I say I'm not trying to be cynical here, but regrettably I have been that person before), "Some days I want to stay in bed because I know when my feet hit the floor it will feel like someone was whacking them all night with a baseball bat.  Some days I can barely work a computer mouse because of pain in my fingers, wrists, elbows, and shoulders. Some days I'm so tired I could fall asleep in two seconds even if sitting straight up on a hard rock.  Some days I feel completely 100% normal.  So how are you?"  Smile. So how do I answer that question?  I find myself saying things that don't really mean anything like, "It is what it is."  Well, isn't it?

When I first got diagnosed with this...disease, my mind went straight to the long term 'what if's.'  What if I develop pulmonary fibrosis? Heart failure? Vascular insufficiency? And on and on and on.  I don't think I ever really thought about the day to day issues that come with a chronic illness like RA.  Honestly (and here's the cynic in me), whenever I heard other people talk about chronic conditions that dealt with subjective issues such as pain or fatigue (fibromyalgia, chronic fatigue syndrome, etc) I just wanted to tell them to suck it up.  Get some more sleep, take an ibuprofen, and get over it.  We all have our issues.  These thoughts intensified after Eric died. (For those that don't know Eric is Gregg's brother that died a few years ago from cancer.)  It could be a lot worse, people...a lot worse.  And while I know that's true, I have to stop and apologize here to anyone I've ever had this thought toward (you probably didn't even know it).  These things, although not as scary, not as painful, not as tortuous as something like I perceive cancer to be...they are real.  And as I've come to realize from personal experience, the psychological warfare that goes along with these types of conditions can be pretty deep and dark and scary.

For some reason, as I was getting ready to go to bed a few nights ago, the thought hit me, "This is going to be your life for the rest of your life."  The thought of being on this roller coaster ride of pain and fatigue and not really knowing what's going to happen next for the rest of my life is seriously too much for me to take in.  It's too big.  Too overwhelming.  It's gotten to the point where when I'm on the top of a hill I can't even enjoy it because I'm just anticipating the next drop.  It seems like it's almost inevitable. 

The term 'new normal' is one that's become all too familiar since Eric's passing.  It's a reality that most of us have to deal with...life is an ever dynamic entity that often does not go the way we planned or hoped it would.  This is my new normal that I have to get used to.  And taking it even further, there are going to be many more 'new normals' to come...and I will have to get used to each one of them.  I.will.have.to.  I guess this is me saying to myself, "Self, suck it up!"  Because if I don't...if I just keep on with this "this is my life" crap, then I will quickly slip into the next battle of that psychological warfare I was talking about...maybe you're familiar with it...self pity?  If I don't suck it up, my focus turns inward and it becomes all about me and what I'm feeling and what I don't get to do anymore and the plans I had for my life that will probably never come to fruition.  Sound like a very healthy place to be?  I think not.

Now I'm not saying that if you suddenly find yourself in a similar situation to completely ignore these things...to push them to the very backs of your minds with no intention of ever digging them back out again.  There is a fine line between going full on into battle (and trust me, self pity is a self-perpetuating, never-ending, hopeless battle) and crowning yourself the Queen of Denial with the "Problem? There's no problem here" mindset.  No, this stuff isn't to be ignored, either. 

So here's a lesson that I learned from my late brother-in-law.  It's one that he taught by example...through how he lived when he was sicker than sick.  He took his concerns, issues, and fears (and yes, he had them) to the only place that promises true rest.  He took them straight to the feet of Jesus and laid them down.  Even though he was going through what were most likely the most difficult moments of his life, Eric gave it back to God and kept James 1:2 close to his heart (and often recited it out loud in the throes of his battle). "Consider it pure joy, my brothers, when you face trials of many kinds..."  I personally never once heard Eric complain or bask in self pity...and if ever there was someone who you could called justified to do so, it was him...young wife, new baby, great career.  I'm sure those "Why me?" thoughts crossed his mind, but he seldom if ever let you know it.  In fact, in his last few months when he was too weak to get out and do much, he called other people...not to ask them to pray for him, but ask how he could pray for them.  Uh...that's not normal, folks.  That's pretty much completely contrary to our human nature.  That's evidence of the Holy Spirit that resided in him. 

So, yes these subjective issues that I used to roll my eyes at and that I now find myself in the thick of are entirely real, but they are not invitations to sit back and wallow in my own little world and worry about what's going to happen to me in the future.  But there is an invitation to lay these thoughts and fears down with my Savior.  And once they're there, then I can finally look outward and see there are other people that need their burdens lifted too.  Maybe then, instead of wallowing I can use the constant (and often more than annoying) presence of this disease to be a constant reminder to me to lift someone else and their need up in prayer.  Lord knows we all need it. 

Fishin' with Papa

A few weeks ago G and I packed up the boys and boarded a jet plane to make our way across the country to visit my grandparents in Virginia.  The only thing on the agenda (besides getting out there after nine long years) was to take the boys fishing.  Will discovered the patience-requiring, slimy past time this past summer and he loved it...when he was catching something, that is.  (Good thing we found a super secret spot that seems to be loaded with blue gills!)  And since fishing is something that's always been near and dear to my grandpa's (aka. Papa's) heart, I thought it would be just the thing to make out visit perfect. After waiting on the rain for two days, we finally got to go and of course I brought along the camera to capture our picture-perfect outing. :)  The pics I got were too sweet not to share. I'll apologize in advance for most of them being back shots but since I can't walk on water and I didn't trust the weather-worn boats at the dock, it was pretty unfeasible to get their faces!

First steps out on the dock to fish with Papa

Just two dudes on a dock waitin' for a fish

Fishing with daddy...one of the best places to be

Trouble shooting

Preppin' the worm

Fishin'

 And my all-time favorite...

Just steals your heart, doesn't it?  Even though you can only see a fraction of this kid's gigantic head (seriously, I've had to pass on some of his shirts because they don't fit over his noggin), the way he's snuggled into my grandpa just makes me smile.  

Picture-perfect, right?  Ha!  Most of these were taken in the first fifteen minutes of the fishing adventure. Then we got a lot of this...

"I wanna hode da powe!  I wanna hode da powe!!!"  Yes, Micah, but if we give you the pole there's a good chance either you or the pole (or both) will end up in the pond and I don't want to go swimming today.

And then boredom set in..."you're supposed to catch fish on a fishing trip, right mom?"  So we got a lot of this...

Mucky pond grass is much more fun to fling around than an empty fishing line.  Oh, please don't let him fall in...not swimming today, remember?

But we finally did achieve success.  Even though it was only a little guy, it made for two happy fishermen. He even reeled him in himself...mostly. :)  Pretty proud five-year-old.

"Touch him, mom.  He's soft!"  No thanks, buddy. I'll pass.

So all-in-all a successful trip with some good memories.  I'll try to mostly remember the ones from the pictures and not the ones of Micah running and tripping over the water-warped boards of the dock and almost falling into the water on numerous occasions.  Ugh, that boy makes my stomach jump into my throat on a daily (sometimes hourly...by the minute?) basis.  

Ahhh...there are their faces.  Good times.

Gripped By Fear

I have flown all my life.  My dad was in the Air Force (yes, I'm a military brat and unfortunately I live up to the latter part of that title more often than I'd like to admit).  He did multiple tours overseas which means I am no rookie when it comes to checking my bags.  I don't remember ever being afraid to fly when I was a kid, or a teenager, or even when I was in college, but over the past few years I have developed the most intense, crazy, and unwarranted fear of those winged metal beasts.  I think it originated with the first plane ride I took without Will.  Being away from my baby was just too much for me to handle.  What if the landing gear fails? Or the cabin becomes depressurized? Or the tail breaks off? Or...or...what if we fly over some weird time warp, disappearing island thing and we go to this scary purgatory, limbo place where we're dead but we all think we're still alive and there's some smoke monster trying to get us?  What if?!?!?!?!?!?  Hold on...let me calm down.  I'm getting a little worked up here just thinking about it.  ***************Dramatic pause**************  Ah, there.

So I was saying, or had I gotten there yet?  Anyway, a few months ago my paternal grandpa died and when that sort of thing happens, it kind of makes you stop and reevaluate.  So Gregg and I decided it was time to make a trip out to see my mom's parents in Virginia since we hadn't been there since we first got married nine years ago and the boys had never been.  They so selflessly drive out to see us every year, but we hadn't made the effort to make the trip ourselves.  Yes, it was time.  None of us are getting any younger, right? 

So last week I asked Will if he was getting excited about our upcoming trip to see Nannie and Papa to which he answered with an uninhibited, "YES!!"  Then the real question I was wondering about...the one I needed to answer for myself..."Are you afraid to fly on the airplane?"  He looked at me like I was crazy, "No."  As in, "Duh, mom.  Why would I be afraid of that?"  And he wasn't kidding.  Does this look like the face of someone who's afraid to speed down the runway at 300 miles per hour then do what is completely unnatural for us two-legged, upright-walking folk and actually leave the ground thousands of feet behind?  Judge for yourselves.

He actually looks a little wild-haired and crazy-eyed here, but not afraid. No, not afraid.  Almost the whole time we were in the air he was talking about how cool it was to be up there above the clouds.  In fact, on one of our last flights (we rode a total of five planes...stupid small airports that don't fly anywhere useful) we had quite a bit of turbulence.  Gregg assured me it was normal but I knew he was just trying to console me before we plummeted to our horrible death.  As we're being tossed (I swear I'm not being dramatic...much) by the winds and air currents or whatever it is that causes the "unexpected rough air," I'm holding onto the arm rests with the grip of death just praying we would live through this.  All the while Will is sitting next to me, "Woah, woah! We're flying all crazy! This is fun...isn't this fun, mom?"  Me through gritted teeth, "Not so much, buddy.  Not so much."  When we finally landed, he asked, "Are we on the ground again?"  Yes, bud (do you feel the relief?).  "Awwww, maaaaan!!!"  Me on the other hand?  I said a little prayer of thanks.

Now here's a kid that speaks my heart language a little more closely than my first born.  His excitement toward the plane ride went only as far as the idea.  He didn't echo the fear that was seeping from my pores, but his nervousness shone through on our first take off.  As soon as we started speeding toward flight I could hear his little voice from behind me, "Oooo, I'm okay. I'm okaaaaay.  Too sca-wee.  I'm okay."  Yes, Micah.  Keep talking. Convince me too.  And he again spoke my mind today as we landed for the final time on this trip, "Yay! We made it!  It's not too sca-wee!"  Nope, not that we're on the ground now.

As silly as this may sound, this is something I've been struggling with for weeks.  I laid in bed at night struggling to sleep because I was thinking of how I was putting my babies at risk by putting them on an airplane.  I know they say you're safer in the air. Well, whoever "they" is, I sure don't feel safer....especially not when it comes to my boys.  It's the total lack of control.  I'm not driving.  I can't get out.  I have absolutely no way to influence the outcome of this plane ride.  No control.  And that, my friends is really the source of the fear.

I prayed long and hard about this because I know this fear is not of God.  He tells us over and over again in His Word not to fear, yet I couldn't let it go.  I kept justifying it with, "But it's my boys, Lord.  It's not me I'm worried about...it's my boys."  Now without getting into a topic that I am completely unqualified to debate, I believe there is an age (or maybe point is a better word) of accountability.  In the later verses of John 9 Jesus speaks of spiritual blindness after he heals a man's physical blindness.  In verse 41 He says, “If you were blind, you would not be guilty of sin; but now that you claim you can see, your guilt remains."  Many have suggested that this implies there is a point up to which we will not be held accountable for the sin we are all guilty of.  It seems from this verse that He shows mercy to those that lack understanding with regards to right, wrong, sin, and the hopeless need for Jesus as Savior.  Be careful to use this as an excuse to sin...Jesus knows your heart and an insincere and dishonest "I didn't know" won't work for Him.  I believe children fall into this category...to a certain extent.  Anyone who's been a momma for a while knows there is a point at which even a child knows and can no longer claim to be "blind."  

Anyway, my whole point in going off on this tangent is that I'm not sure how close Will is to this point and I am fearful of him, uh well, dying and being held accountable.  So all this...lack of control, uncertainty of Will's eternal security...all these thoughts clouded my mind and allowed fear to creep in and take over to the point where I felt almost paralyzed by it.  This type of fear, this paralyzing fear renders us completely ineffective to carry out the tasks God has set before us.  In my giving into fear for Will's salvation, I am useless in helping him toward it.  The Bible has given Gregg and I the command to bring Will and Micah up to know God's love, His commands, His Word...to know Him.  But me spending all my time worrying about it accomplishes absolutely nothing for Christ and His kingdom.  My worry takes the focus off of Him and His work.  Even Jesus points to the futility of worry of this kind when He said, "Can any one of you by worrying add a single hour to your life?" (Matt 6:27)  In this same chapter of Matthew Jesus assures us He'll take care of us because of how much He loves us.  This doesn't ensure that we'll live through every plane ride, or car ride, or walk down the street, but it does say to us that He knows what He's doing.  He's got this and whatever happens it will be according to His will and we can trust that it will be what's best for us and more importantly His kingdom because He loves and cares for us.  

So my job is to be obedient to His command to bring my children up in a home that teaches of this love with parents that exemplify His character.  I can't do that gripped by fear so my prayer is for Him to take it away...completely. And while I admit I still let fear take over on bits of that plane ride (I'm sorry, turbulence will never be normal to me), there were multiple times I got the opportunity to talk with Will about the beauty of God's creation that we don't get to see every day...like the sunrise above the clouds on a gloomy day.  It was breath-taking, so much so that even my five year old recognized God's glory in it.  He did that for us so we could in turn give Him the glory that only He deserves.  In the words of Micah Moo, "God made....da woyd." (That's "world," folks.)  Pretty awesome that God gives us these reminders about who He is.  I'm thankful for that today...and for living through the plane ride. :)

Just wanted to note that the idea of Age of Accountability is not something that's spelled out black and white in the Scriptures. There are differing views on this (I shared mine) and I encourage you to dig into the Word if it's something you're curious about.  It's important to point out though, that whichever side of this concept you fall on, it doesn't change the message of the gospel: that Christ died for our sins and we can have everlasting life with Him if we turn from our sin and recognize Him as the only way to salvation.