Yes but were you TRYING?

We started months ago...it wasn't a simple process.  I mean, the actual ACT of making a baby is a rather simple process, but in my case it started a lot sooner than that.

Our son Liam is the joy of our lives.  This boy...I mean, he does weird stuff and he's always dirty and stuff, but he's just so full of love that he's impossible to forget about.  I've said it before, but even people who dislike kids as a general rule REALLY like Liam.  He's that kind of kid.  So when he started asking for a brother or a sister, we stopped and took notice.

Rewind a bit before that as well.  When I went on my Gilenya in March of 2015 I was told beyond a doubt I was not allowed to get pregnant while taking this medication.  There are no MS meds currently on the market that are safe during pregnancy, so I was to play it safe.  Friends of ours had been actively trying to conceive since we had Liam, and this was another reason why we were playing it safe.  We knew the relationship would break down if we had another, so we waited.

But when Liam started asking for a sibling, a small fire was lit in our hearts.  Very small.  We'd been through the ringer with Liam.  The seizures.  The fevers.  The falls and trips to the ER.  So why on earth would we want that again?  Did I mention he didn't sleep through the night until he was 3?  Come on.  That's GOT to count for something.  But he kept asking, and we kept questioning him- Do you realize this means you're going to have to share mommy and daddy?  You're going to have to share your room.  Babies cry!!  And still, he asked.

At the change of the year, the church we've been attending host a prayer room.  I blogged about it if you'd like to read about it.  But I just poured out to God about the possible need for another child.  It was off my radar.  I had too much on my plate emotionally and physically.  I needed peace.  So I just poured out to God and then waited for a response.

In January I can remember the exact place in the road when I stuttered, "Um.  If we want to have a baby, I don't see any reason why we shouldn't.  I'm willing if you are."  And then came the bargaining.  For like, a solid two weeks we played every "what-if" card we had in our possession.  If you care to read back in my life, you'll see that Andy and I went through a rocky moment after my first pregnancy.  The MS diagnosis was like a glass of cold water to our face and we realized we had to pull together.  It was the elephant in the car at that moment.  "I don't want another child if it's going to risk our marriage."  And then we decided it wouldn't.  Just like that.

One thing that is so wonderful about my husband is that he GETS me.  Like on a deep, emotional level, he understands me and allows me to be who I am.  This has happened because in the past three years I've learned to communicate with him and accept him for who HE is.  He's also gone through an amazing transformation after seeing a scenario played out in front of him by other people.  It brought him to a screeching halt and he decided right then he was changing.  NO more short fuse.  No more brash anger.  I decided in and of myself no more tears.  Speak.  Be strong.  Be brave.  Do not be afraid of anything.  This has greatly impacted the two of our lives on a personal level and then trickled into our relationship.  God has been GOOD to us.  We've found a fantastic church we love and we are being fed there emotionally and spiritually.  We are no longer slaves to those people we once were.

Our journey began at the neurologist.  I had to be off my med for 3 months after being on it for one year.  So March.  April.  May.  You can try.
Next came the OB-GYN and then the specialist.  Sure.  You can try.  The proverbial timer was set.  This was happening.

I stopped taking my Gilenya, half expecting to be in a wheel chair the next day.  But remarkably, I had never felt better.  I stopped getting sick.  I had more energy.  It was going to be okay.  Next I went off all my PCOS medication, one by one so as not to jolt my system.  Fine.  Put on a little weight, but it's okay.  It's all for the cause.  Last but not least- my pill.  The Goalie.  The big one.

May 23rd was my last period, June 7th was the positive pregnancy test.

That's when you know, it's not going to be the same.

I wrote this for a newly dx friend, Stacey.  I hope it will bring her peace and hope.
 ------------
Some extremely wise advice was given to me once, after I was diagnosed with MS:

Know your body.  Know what every test is.  Know what all the numbers mean.  Know what every code stands for.  Know it all.  You're going to have this for your entire life, so it's your job to know what it is.

So for the past three years, I've been learning everything.  And not just my things, my friend's things as well.  What's normal, what's not.  What's me, what's them.  What's progression and what's a bad day.  What's a flair and well, what's a full on relapse.  It's true what they say- knowledge is power.  When you know enough about something, the scare is taken right out of it.  It's like...turning the light on.

When I was a kid, I was terrified of fire.  My aunt and uncle watched this terrifying movie in front of me, and the one lady hated the other for whatever reason, so she burnt down her house.  My uncle has been known for the gore he enjoys watching.  I was too young.  Maybe 4?  But until that point, fire was completely off the radar.  Now I was consumed with it.  My parents did what they could- we made a "if it happened to us, here's what we'd do," plan.  Complete with the trial run.  I was terrified.

At night, I would dream of giant fire balls engulfing my home.  My mom would wake up with a sleeping child by her bed- another nightmare.  For years and years, this was my only fear...until it happened.  My house burnt in 1993- it was spontaneous combustion.  I was in the basement and my mom heard someone screaming upstairs.  I remember the TV flickering and the lights flickering, but none of our smoke detectors went off.  Mom called down the stairs for me to come up, and she was trying to call 911 (from within the house, yeah.)  I remember lots and lots of smoke, and it was in that millisecond I realized; THIS was my worst fear coming true.

I screamed for my mom to come out with me.  GET OUT!  GET OUT!  But she wouldn't.  I ran out of the house and down to the neighbors.  I had no shoes.  I had the outfit on my back.  People from all over the community came- farmers mostly- with their tractors and flat bed trailers.  As the fire fighters saved what they could, the farmers loaded up our possessions on their hay beds and took everything to a local empty chicken house.

My mother, of course, was treated for smoke inhalation.  My dad came home from work (no cell phones in 1993) and they wouldn't let him down our road.  He ended up driving through fields and running past fire police until he found us.  A local woman I hadn't met until that day held me through most of the fire.  The neighbors gave me (too small) shoes.  We spent time running boxes up from my neighbor's garage to the people awaiting our filthy stuff to haul it away.  By the time all the action was over and the last cinders were out, it was late, it was dark, and we were exhausted.

When I was diagnosed with MS, it was like experiencing the exact same thing.  MS was off my radar.  Old people get that, right?  Oh gosh, I didn't even know how to SAY it right.  Scerosis?  Huh?  But immediately you're taken with it.  It's all you can think about.  Your ear twitches- is that MS?  You cough TWICE in a row- oh MS for sure.  You start twitching...could it be?  And you start living life as a person with a special need.  With a disease.  Once it has happened, there's NO pretending it didn't.  You can no longer live life as a healthy member of society.  You've been handed the flag, and now you must march under it.

I remember after the fire, wondering who I was allowed to tell.  I went back to my elementary school in the fall and people whispered about me.  My teachers all looked at me with sad eyes.  I had to go to counseling.  When we did fire drills, I was sent to the Principal's office so I wouldn't freak out.  (Had I ever freaked out?  Precaution, I guess.)

When I was diagnosed with MS, I didn't want anyone to know.  I called my grandma to tell her, because I didn't want her to tell anyone, and she cried.  Great.  I made my grandma cry.  My mom called everyone she knew I SWEAR.  My uncle came to me at a family gathering, "Elizabeth.  I've heard about your situation and want to offer my condolences."  Really?  Condolences?  My inlaws called me crying and sobbing.  Everyone says, "I'm sorry."  For what?  Stop saying that.  You're not "Sorry."  You'd be sorry if it was you.  It's not you.  It's me.  Don't try to make yourself a part of my story, because you're not.  This is about me.  This is about my body and my health.  Don't try to use your sympathy to butt your way into my issues.

And you also feel like you're the mourner and the caretaker.  Because NOBODY knows what to do with you.  You try to keep a happy upper lip for your spouse and your parents and, like, your kid.  "Yeah, the steroids don't really hurt all that much!"  Then you get all those, "I don't know HOW you can be so strong..." well meaning folk.  "You are such an inspiration to me, with being a mother AND having MS."  Like you can't do one OR the other, you're obligated to do both.  All these people mean well but.  Eh.  You don't need a medal.  You need a nap.

That's when you know it's not going to be the same.  Life as you know it will never EVER be the same, and somehow, someway, you're going to have to find normal again.  You're going to have to find Home Base again, and just plant your flag and stand in solidarity.  You have to quietly make it through day to day until THIS becomes the new you.  It's a matter of sitting still and doing some soul searching.  It's a matter of FORCING yourself not to speak, but rather just listen and behold what others have to say.

So you get to a point in life where your diagnosis is three years in waiting, and you're expecting your second child and your marriage is really really good and you can't imagine life any other way.  And you find yourself saying of other, "Oh, you have MS?  It's not that bad, really.  Here's how I deal."  And then, you do.

MuckFest MS

Sometimes things turn out the way you want them to, and it's like, "WAHOOO!"

And then other times, things just don't.

Like how for MuckFest this year I had a team of 16 including two volunteers.  AWESOME!  Biggest Legion EVER!

Then one by one they started dropping like flies- five days before the run.

First member left because it was makeup SAT day.  Oh okay.  Sounds good, sorry you can't run.

So my DAD joined the team in her place!  How awesome!!!

Second member left- was having a possible MS relapse.  Oh, sorry to hear!  When he left he took Member Three and Member Four with him so...down three more.

When the fifth member left, I was not at all surprised.  Ankle issues.  Why not try to ice it an put it up for a while?  No?  That's not going to work?  Oh.  Well, you know, don't push it.  Don't hurt yourself worse.  Sorry, we'll miss you.  Member Five also took Member Six.  She was under the weather and couldn't make it.  Why not come to cheer us on?  Oh, no child care?  Didn't you have child care when the two of you were originally coming?  Oh...um.  No that's cool, no hard feelings.  (Also, try not to post on Facebook your hiking outing you took instead of joining your team.  No hard feelings though.)

It's 10PM the night that Muck Fest sign ups were ending.  I'm down 6 members and only have one alternate.  I throw up the Hail Mary and phone a friend.

"Hey.  You two want to run?   You're out of shape?  Hey so am I!  It's fully paid.  Please say yes."

And they did.  And it was fabulous.

I'll let the pictures speak for themselves, mostly because it was cloudy in the morning, and then just like that it wasn't.  And I was fine and then just like that I wasn't.  I had asked for a tent for the shade.  When we got back from running, it wasn't set up.  Instead of figuring it out, some kids had gotten to it to try to figure it out and instead really REALLY messed it up.  Instead of continuing to figure it out, every one of our spectators just sat and chatted.  Myself and two team mates set up the tent, but by that moment it was too late.  My vision was foggy.  My belly was upset.  It was too much sun.  Too fast.  I was trying to sip water, TRYING to keep nutrition in my stomach, but the entire place was spinning.  I laid down where I was.  They poured water on me.  Everything made it worse.  I was at the point of no return.  They helped me to the medic tent where I was given more ice, but it was all just a little too late.  They drove me to my car and then the 2 hour long trek home with frequent bathroom breaks for me.  Just water type diarrhea.  The whole way home.  Everything spun.

At home I tried to sleep, but the room wouldn't stop spinning.  I kept waking up in a panic.  It was like what you hear detox being like.  Nausea.  Panic.  Your brain won't stop spinning.  Nothing is right.  Everything is wrong.  I contemplated the ER but then decided not to.  I didn't need that kind of attention from my family, friends, etc.  I'd lay low.  I'd work through it.

Two solid days later, I could stand up without spinning.  It took me five days to go to the gym again.  A solid seven days before I could say with confidence that I felt like myself again.  I cried.  A lot.  Somewhere inside me, I knew this was my last MuckFest, but I'll wait until next year to decide for sure.  My team mates surrounded me fully.  Texts and calls and Facebook messages just singing my praises- telling the world how strong I was- while I had my head buried in my pillow trying to get the world to be right-side-up again.  Strong.  Right.  Inspirational.  Exactly!  That's my middle name.

I post a picture to the MuckFest Facebook site.  A friend had snapped it as my team was rushing to get me cooled off.  Crystal, bless her heart, probably knocked down five or six people to get me a hose, and then Cherith just started hosing me off from the top down.  Enough people saw the picture on Facebook that it got recognition from the corporate realm.  They asked me to record a robo call to try to get some more monetary support.  Then they contacted me about using the picture in the Momentum Magazine which goes out to all those with MS who subscribe and take part in the National MS Society.  Amazing in my time of absolutely failure, enough people connected with that.

Maybe I'll do it next year.  Maybe I'll just watch.  Yeah right.

West, By God, Virginia.

So we went away this past weekend for my husband's birthday.  We went to Pleasant Valley, West Virginia.  We had a BLAST.  The little cottage we stayed at on the Monongahela River sloped towards the water, had about 4 million stairs to get down to it, and a huge deck surrounding it.  At the bottom of the 4 million stairs was a little dock, and after about 5 minutes, Liam decided he needed a fishing rod.

NEEDED.

You do not even KNOW.

So while the boys tried their best to land "the big one," I was busy washing dishes and cooking food and picking up socks and underwear...so pretty much all the things I do at home...  We ate cake on the deck, and enjoyed hearing the train as it passed through the valley.  One night, it rained.  It was this heavy, loud, relaxing rain.  The kind that made you wonder if God WAS really up there bowling.  I thought Liam would wake up, but of course he didn't.  For all the times in this life he has awoken us, a storm has never been one.  The boy sleeps like the dead when he's truly asleep.

We made some big changes in WV.  Things I will share with you later.  Things I have a million blog entries STARTED and none finished.  I just know that being there in West Virginia gave me such a peace I cannot describe it.  Like God was really really there, looking down on us.  Walking among us.  Showing up in places like my son's laugh at catching dumb trash in his fishing rod.  We went to this fort-type thing, and he was picking up rocks.  The actor portraying the blacksmith gave Liam a portion of a brick from the original homestead on the grounds.  Pre Revolutionary War!

------

On Sunday morning Andy looked at me and I at him.

"So."
"So."
"So......?"
"So.....!"
"That's it then.  No more."
"Nope.  No more."
"Goalie is officially..." makes motion with hand, "Pullllllled."
"Yup."
"Yup."

Two.  Huge.  Sighs.

Well, THAT'S a bummer.

I don't need surgery!  Whoop whoop!

I've got this nagging problem they now know is "gastroparesis," which is a doctor's code word for "Your stomach doesn't empty out fast enough, if it empties out at all."  So here's the plan:

Nothing.

Ha!  Nothing.  I need to keep working out, so that's easy to keep up with.  I take Miralax if I haven't gone, and nothing if I do!  I eat smaller, more frequent meals, and I know to stop eating when I'm full.  So here I had myself worked up for NOTHING.  It was like Grover, at the end of "Monster at the End of This Book."  (PLEASE tell me you get that reference.  Please.)

When I had to have the endoscopy, something in my brain flipped off.  I had to fast- eh, okay.  Until 2pm.  Um.  Okay.  And I had to be put under for it, which is what it is.  Maybe that's what had me upset?  But at any rate, my brain started misfiring RAPIDLY.  I was trying to get Liam ready to go to my mom's, and I couldn't speak.  It sounded something like:

Liam, put on your ch-ch-ch-shirt.
I need you to f-f-f-f-comb your hair.
Come on now, it's time to get your sh-sh-sh-sh-shhh coat on.

I looked at Andy, completely terrified.  Because one can exist without feeling in one's leg.  When your brain goes...well.  What else do you have?

The attack went away in about 30-45 minutes.  I regained my speech, and felt foolish of the last hour of panic.  I had my test.  They said I was "unremarkable."  Fabulous!  I strive for mediocrity!  In my head though, I couldn't stop recalling that terrible episode earlier that morning.  "This is how it ends," I thought.  "This is how people like me end up in wheelchairs."  MS is sneaky like that.  You go into remission, meaning there's no attacks, life is good, you're maintaining your level of normalcy like a champ.  You ALMOST forget it's happening to your body!  Then it creeps up on you in small ways- fatigue even after you've taken your awake medicine.  An episode of drop foot when you least expect it.  A sensation that rivals ants running up and down your spine when you get out of the shower, and doesn't subside until your body temperature stabilizes.  Your stomach stops emptying properly, causing you fits of pain that are unending.

We're not victims, mind you.  MS patients.  We're a proud, proud people.  Nobody I have encountered in my short while in this diagnosis has EVER used their disease as an excuse unless they really needed to.  (There have been moments of teary confession to the supermarket clerks as I'm fumbling to sign my receipt, "I'm sorry, I have MS and this is very hard for me.")  Once in the recent past, we had someone on our street- a visitor- continually parking his little nasty car in front of my next door neighbors house.  She's got two little ones!  She needs to park there!  So I granted her a very rare 'get out of jail free' card.  "Tell them I have MS and you need to make sure you've got a place for me to park," I told her.  "I give you permission."  Hey, it's got to come in handy at some point, right??  As long as you use your powers for good and not evil, I'm down with it.

I feel like there's no comparison between diseases.  Cancer, ALS, MS, CP, MD...they're all equally crappy to have.  However, you never see as much pride with cancer patients in the "during" moments.  There are no "I'm currently fighting cancer" tshirts.  When the cancer goes into remission, of course we celebrate.  But the fight is long and arduous and private.  We respect those who are fighting that battle currently.  With MS, man do we sport our apparel.  We love flaunting it, because we love our good days.  We love those moments where we feel like every other Joe out there NOT fighting a disease.  I will wear my "I muck it with MS" bandana to the gym whenever I can, because it symbolizes strength and determination.  It symbolizes power over adversity.

I was sharing with Andy the latest ad campaign from the National MS Society.  They have folks wear 360 cameras to record their hobby such as skiing, surfing, dancing...and then they put the virtual reality goggles on someone with MS who used to do those things.  For a moment, that person is transported out of their chair and into the waves, onto the slopes, onto the stage...I was getting emotional watching the clips when Liam pops in.

"Mommy!  You have that!  MS!  You have that!!!!"

He proclaimed it like it was positively the best news he had ever heard.  They're saying it on TV and that must mean it's awesome.  I realized now that I'm thinking about it, he probably didn't associate the people in the chairs with the MS.  He was probably thinking about the dude surfing and the lady dancing.  He probably saw the skier and thought, oh COOL!  MS!

I locked eyes with Andy and he looked sympathetic.  It occurred to me for the millionth time that Liam would not know life without a mommy fighting MS.  If God blesses us with another child, that child will be born to a woman diagnosed with MS.  It's going to be a common household word and condition for both of my children.  Is that bad?  Liam can't wait to run MuckFest with me.  And as much as I'm like, YEAH BUDDY!  I'll run with you FOREVER!  A deeper part of me remembers waking up a few weeks back and not being able to speak.  It can all change in an instant.

We're so concerned about relapsing after we give birth to this child who isn't even conceived yet.  I was becoming obsessed with it until I realized I could relapse TODAY.  Baby or no baby, there are no guarantees in MS.  Or in life, really.  Then I'd get through this hopeful pregnancy, and I'd realize I spent all that time worrying over nothing.  Then I'd be left to think- well THAT'S a bummer.  I don't have that much energy- why spend it on worrying?

Sometimes I'm glad he's three.

I have a huge amount of empathy now.

I didn't before.

I just got it within the last...5 years?  It's like, one day I was self absorbed and spent more time on my makeup than contributing to society, and now I'm suddenly so concerned about everyone else that I often miss the chance to put on makeup.  Or shower.  Or like...eat.

Empathy is a super power.  But sometimes I wish I could turn it off.  I'm no bleeding heart, but I've found in my lifetime that there are people out there who need help, and I can provide them with that help.

Except for when I can't.

One of the things MS has stolen from me is my control over my body/emotions/mind.  I find my reaction time to be slower on my bad days.  I find my reactions to events to be just that- reactions.  Anger, sadness, doubt.  All there bigger than before.  We have a three year old.  Sometimes, there's just no time for such things.  There's no time for down time to collect myself.  Just keep parenting.  There are times where I swear the thoughts in my brain are going to eat me alive.

There are sometimes I'm so glad he's three.  Because being three, you don't need to know many things.  You know what people tell you and what you perceive from the events you are allowed to experience.  While you are incredibly fragile, you are also incredibly resilient and your biggest display of emotion is over like, eating your potatoes rather than like, world hunger.  Your world is very very small, but your imagination is very very big.  It's in these moments as a parent, you are never sure what's going to come out of their mouths.  Liam apologized to me after a tantrum the other week, "Sorry mommy.  I went to the Dark Side."

We were in the bathroom at Home Depot- CLEARLY every child's most fave place to hang out in the whole entire world.  Especially when your parents are feuding over what exactly they should do with that closet space, and why all the things they sell are crap and there are tears and anger and nobody goes home with ANYTHING...  (Update: closet is finished- marriage is mended- all it well, and it looks pretty darn good.)

But a woman, who was portraying herself more like a man, came into the restroom.  No biggie.  You do you, girl.  I believe the PC term would be "presenting" like a male.  Again.  I'm holding the door shot for my son who is swinging his legs and singing and enjoying the echo of the bathroom stall.  She goes into the big stall and Liam finishes his bathroom concert, and we go to wash hands.  The gal emerges from her stall- short cropped, bleached hair.  Gauges in her ears, workman boots with carpenter jeans and a well pressed plaid flannel shirt.

"Mommy, is that a boy or a girl?"

Here's were I panicked.  I laugh when I'm nervous or panicking so I'm doing this odd mental-ward chuckle and "shhhhh"ing my son like never before.  I kept hoping she couldn't hear.  Like maybe she was also deaf.  Hey, no such luck.  In a moment of sheer desperation, I think I even clapped a soapy hand over his mouth, "shhhh"ing like a fire extinguisher.  I'd like to say now; this was not my finest moment.

She was thankfully EXTREMELY GRACIOUS.  God bless her, she handled the situation with grace and poise, and it took a large part of me holding me back so I didn't ugly hug her.  But by this time, I had activated the obnoxiously loud hand dryer, which I knew would make Liam go into fits of panic- but would possibly shut him up.

-How old is he?
3.
-He's cute.  My nephew asks me the same question all the time.
I'm really, really sorry.  Kids say whatever they want.
-Naw, it's fine.
 He's scared of the hand dryer.
-Oh man, I am too, buddy!  There are towels over on this side.
That's a dumb place for them.  Thanks.
-Hope you guys have a great night.
You too!  Thanks!
(End scene.  Begin total brain meltdown.)

I handled that COMPLETELY wrong.  In fact, I was possibly THE poster mom for how to not handle an awkward situation.  What I should have done was say to my son, "It doesn't matter, Liam.  Just wash your hands."  And then I should have introduced myself and my kid, "Hey, I'm Libbie, this is Liam.  He's a curious 3 year old who speaks his mind!  I'm sorry if he offended you."  Instead I cackled like a fool, and probably looked as dumb as I felt.

In the car I approached the situation with a sound mind.  I told Liam it was impolite to ask questions about people in front of them.  I told him we needed to love people just as they were.  I told him a good place to ask questions was in private.  Kids just have no filters, and in a way that's refreshing.  Until they become 30 year olds with no filters...and then it's not so refreshing.  So we instill these filters on our kids, and teach them when to speak and when to remain silent.  But then we hope sometimes they forget those filters and stand up for what they feel is right, no matter who is listening...

Parenting is hard.  Be gracious to others.
the end.

PLEASE. Don't Send Me to Africa.

Liam puked last night in his sleep.  It was in his ears, in his eyes.  It was actually up the wall and onto a canvas picture he has above his bed.  And the smell.  Oh heavens the smell.  I actually checked twice to make sure he didn't poop himself.  Andy held his hand over his nose while stripping the bed.  I simply mouth-breathed and hoped for the best.

When your kids are sick, it's so easy to get upset.  I was in a dead sleep.  And I do mean dead.  Since Liam's been sleeping through the night, I go into this catatonic state where not even a nuclear bomb could rouse me.  I'm making up for lost time, I suppose.  2+ years of a non-sleeper?  I'll take what I can get.  But I heard this abnormal coughing and my mommy senses roused me in an instant.  My mom always said she knew when her kids were sick, even if they were miles away.  I now understand this to be true.

Andy was a champ, I must say.  I went into Kamikaze Mommy Mode and started hurling out orders.  Liam- to the bathroom.  Daddy- strip the bed and throw it in the washer.  No, I don't care that it's chunky.  Liam- let's get this yucky clothing off and get you cleaned up.  Daddy- put a fresh sheet over Liam's bed.  Doesn't matter if it fits.  Liam- let's brush your teeth.  Yes you must use the minty paste.  Yes I know you hate it.

Wash in washer via Andy.  Clean PJs on.  Liam cuddled up in the clean bed, ready to try again.  Daddy in bed.  Mommy rocking Liam to sleep.  20 minutes tops.  I text my husband a high five from the next room.  We totally nailed this vomit.

Episodes like this totally give me hope.  Episodes where Andy and I handle a really tough situation with grace and ease.  Like, the car, for instance.  He knows he freaks.  I know I cower.  We are both grown up enough to know this needs to change for the good of the lodge.  We can't live life like this.  Baby Number Two is fast approaching conception.  We need to grow up before then.

Today was my last Gilenya.  No MS meds until the baby is born.  That could be a year.  Two months off Gilenya, and then off the pill in May.  Then trying in June.  I feel like God has "okayed" this timeline and set it in motion.  But something hit me yesterday as I realized this is it:

This is it.

The ball is rolling.  Getting back on that med is ridiculous.  My chances of relapse are higher now that I'm off it.  I trust God will bring me through this...but I don't really trust him.  Lip service.  God, I love you and I trust you with my life, but.  Please don't take my legs.  Or, like, my vision.  You can go ahead and allow me to be morning sick...okay I'll take um...fatigue... but like, no drop foot or like, permanent loss of use in my right arm.  So God, I trust you 100% and everything you say is correct and true.  Okay so, okay, take my vision.  Okay fine.  But like, don't like take it before my baby is born, because I want to see him or her for the first time.  And if you HAVE to take something of mine, I guess you can take my right leg again, but PROBABLY not my left, because my right is still gimpy from the last time you...

And on and on.  We all do this.  YES LORD, YES!  In church on Sunday.  When the worship team has your hands in the air and God is present and your heart is FULL.  But those scary nights when you're on the john for an hour, because the radiation from the last test you had is trying to eek out of your system...um, God, this isn't going to last MUCH longer.  Right?  This isn't going to hurt too badly...right?

It's like going to God- I'll follow you ANYWHERE.  Just please, don't send me to Africa.
Jesus, you are my all in all.  I give my life to you.  Please, just no diseases.
Father in Heaven, everything I am is yours.  I am clay in your hands.  Just please don't let anything painful happen to me.

I'm laying in bed next to my son, who still smells like vomit, and I'm thinking about my mom.  I text my husband in the next room: So, did your mom ever seem like she was scared when you guys got sick?  He answers: Nope. I write back: Did it ever seem like she was out of control of the situation.  He responds: Nope.  Mine either, I conclude. 

I think this is why boys get married to girls, and then they panic because she's not like mom.  Wait.  She gets tired?  She comes home from work and doesn't have supper really INSTANTLY??  She doesn't know how to cook that ONE THING I need to have RIGHT NOW?  If I had a dollar for every time I heard my husband say, "Oh, it's fine.  Just not like my-"  Shut up.  I'm not your mom.  Some day Liam will meet a very lovely girl who is also not his mom, and I'm going to give him a talk: honey, she's not going to be like me.  Not everyone can be a perfect female specimen.  Just ask your father.

When my house burnt down, I was 8.  I remember every second of that day as if it were yesterday.  No part of it is hidden in my mind.  One thing that sticks out is my mom- she had to be taken to the ambulance and given oxygen.  I was checked, and then released into the arms of a woman I had never met, who held me and rocked me and told me about insurance and how everyone was safe and that was the important part.  But my mom...she wasn't there.  She was having a panic attack (which as an adult looking back, I don't blame her- my goodness, she's watching everything they've ever worked for go up in flames) but she wasn't there.  I remember it was the first time I had ever seen her vulnerable, and it terrified me.  What?  Mom has feelings?  A year later, she gave birth to my sister at age 40.  Again, looking back as an adult, I can't imagine the panic she must've felt.  Pregnant at 40?  In 1994 it was just about unheard of- and this pregnancy was completely unplanned.  But she got through it.  Looking back, I can't remember a time until maybe my teenage years, where my mom didn't have it all together except that one day that changed my life forever.  Mom is human.

So it won't be easy, but what pregnancy and labor is?  Will I relapse?  Probably.  Will I continue to trust God?  As long as I have breath.

Man.  That "dying to self" stuff... it's for real.  In the meantime, I'm going to apply for my passport, you know, just in case God decides to send me somewhere.