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.

All roads lead to...

I had bronchitis.  Well, I guess by rights, I still do.  Andy had encouraged me to see the doctor, which I did.  She gave me some weird antibiotic- doxy roxy moxy something.  I don't know.  All I know is that I was allergic to it and I spent the next 24 hours trying to get it out of my system.

Large puffy spots all over my face and chest and shoulders... oh yeah.  It was exciting.  I thought I was going to go into shock and die, of course.  Because all roads lead to death in my book.  I'm ridiculous.  I know.

Meanwhile Andy was also sick, and poor Liam was feverish all weekend.  I gave him some ibuprofen here and there just to keep it under wraps.  After all, three sick people in the house does not a happy family make.  I don't think Andy and I had a civil word all weekend.  When he's sick he gets mean, and when I'm sick I get vulnerable, and it makes for TERRIBLE bedfellows.  Like, terrible.

So I find out, unrelated to the bronchitis, I need my gallbladder out.  It's sludgy.  It's not working.  It's hurting me.  Therefore the logical thing to do would be to remove it.  It's an outpatient surgery, from what I understand.  But of course, I'm going to suffer complications and die, because as we discussed- all roads lead to death.  This surgery makes me edgy.  I don't like the thought of a knife slicing into my skin.  I don't like the thought of anything piercing the skin, actually. (I was 18 when I got my ears pierced.  I actually signed the consent form for myself.)

Andy, God love him, does not do well when I'm sick or when Liam is sick...or when he is sick.  He panics.  He freaks out.  He passes upset, concerned, compassion, and just runs directly at "angry and mean."  (Sorry honey.  But you do.)  NORMALLY, I can thwart this, because I know it's coming and I know he loves us.  I know his heart, so I try to understand it the best I can.  But I was terrified to tell him I needed surgery.  He was out with a friend the night before so, I just told him first thing in the morning before he went to work.

"Bye honey!  Oh, PS- they're gonna take an organ from my body!  Love you!!!"  He went to anger pretty much directly.  Not at me.  But at the ER doctor who noted my "sludge" but did not act upon it.  And then proceeded to "we'll get through it, we always do."

It occurred to me at that very moment that marriage is very very hard.  It is.  No two marriages are alike.  No two people are alike.  This isn't bad, mind you, it's just an immutable law of nature.  Any time you take two people and make them interact for the rest of their lives, you're going to have conflict.

My sister is getting married.  She's 21.  She says she's ready, and maybe she is.  She's been planning this wedding for...legit 4 years.  They were engaged in January, but the venues had even been booked before that.  It's ridiculous, but it's not my life.  So I should maybe delete my prior comment and say she IS ready- for the big party that is a wedding.  She's ready to look like a princess.  She's ready to have her picture taken and give hugs and kisses and eat cake.  THAT.  She is ready for.  She's ready for the Hollywood.

The truth is that marriage- as we previously noted- is very very hard.  And after that Hollywood is over, well.  Hee hee.  It's hard.  When you get married, and you're staring dreamily at each other, you make a laundry list of all the things that could go wrong in your lives:

Sickness and in health?  That's the common cold, right?  Or surely it'll be HIM getting sick, or our future BEAUTIFUL, blameless, spotless children.  I'll be just caring for them, wearing pearls and a matching jumpsuit...  Bam.  Four years into it.  MS.  In sickness and in health now looks like you laying back down in an MRI machine and clenching your husband's hand for dear life as they speak your possible future.  It looks like chronic fatigue where you're once again, back down on the summer lawn because you've passed out from the heat.  It looks like screaming into your pillow because you're fairly sure your life is over, so how could you share that life with anyone else?

Richer or poorer?  Well everyone is poor when they get married, right?  He's got a good job which I know he's going to advance at.  He's of course smart and intelligent.  And my job is iron clad!  We drive two well running cars and going for groceries is such fun!  Oh groceries.  How I love to shop for you and pull everything off the shelves I could ever imagine.  Stuff mom would never let me get... sigh.  Nope.  Job loss.  Bankruptcy.  It costs money to be sick- go to the doctor- get medicine.  You realize you're sick of cooking after 3 weeks.  There's no money to go out to eat- and when there IS money, you can never agree on what to eat anyway!  (Can I get an Amen?)

I think we ALL go into marriage with rose colored glasses on.  Because we like living there.  It's easy there.  We can shove more things under the rug and pretend they're normal.  We can just ignore those hurtful things we said to each other because we're IN LOVE and I know we didn't mean them! *eye flutter harp strum*  Some people, I think, just go into marriage with more of that veil over their eyes.

My husband is a wonderful man.  We argue, but we make up.  It's the natural flow of a relationship.  And since I've vowed to him that I will love him until the day we die, and we all know all roads lead to...well.  You know.  I intend to keep that promise.  I'm too stubborn to let him forget he promised to take care of me forever :)

Abide

Ever have one of those weeks where nothing you do is right?  Simply based on your self image?  So essentially, I'm having a bad week because I don't feel like I'm good enough/strong enough/wise enough/thin enough/happy enough to be a functioning member of society.

I'm never satisfied.  By nature.  I'm never good enough.  I've lost weight- huge amounts of weight- and I managed to creep back up a little this week.  And I could just go in a corner somewhere and bawl my eyes out.  I've been holding it in and suppressing it so much this week, my physical heart ACTUALLY HURTS.

And I'm doing it to myself.

Maybe blame it on the Winter Blahs.  Blame it on the fact that we had 32 inches of snow.  Blame it on how my husband is so dissatisfied with his job that it is consuming his every molecule in his body.  Blame it on that darned scale.  That stupid scale that just peers at me from the corner of the gym, telling me I'm not good enough.  Telling me I'm putting weight on.

So because I refuse to be the victim of my own demise, I started to do things this week to make myself feel better.  I've been taking walks during the day, during my breaks.  Fresh oxygen is good for you, I think?  That's a thing, right?  But last night I broke down and went to the Prayer Room.

We've been attending this church- Dove E- and I'm so inspired there.  The church we just left was...dead.  Just spiritually dead.  There was no joy in worship anymore.  Everything was a chore.  They were bound by the church council.  It was shrinking in size weekly.  They couldn't stick with a pastor.  They made things so hard for the pastors who WERE there, they all left.  People were saying mean things about my husband and I.  People I confided in were suddenly brash and miserable.  My father was being used and abused in his music position- he was miserable.  We were miserable.  And when we left, we were harassed.  Terrible emails being sent to me, "How would that look to the rest of the congregation if you left when the pastor left?"  My grandmother was dying at the time, and we received no support.  The church across the street from ours brought us food.  The pastor who was actually leaving at the time bought us all supper- came and laid hands on my grandma.  The pastor who was filling in temporarily incidentally saw my family as they were hauling my Nanny's dead body out of the house, and had the AUDACITY to ask my dad if he was playing piano on Sunday.  So we left.  And people are still harassing us.  I was at home recently on a Saturday morning, just out of the shower, music blasting, Liam and I were having a dance party while cleaning.  Knock came to the door.  I saw it was someone from the congregation, but couldn't pretend I wasn't home.  Do people still just pop in on people unannounced?  Who knows.  They did.  I invited them in- I'm not a beast- but did not invite them to sit down.  My heart is sore- I don't want small talk.

I'm spiritually starved.

When we started attending Dove E, looking for a place to fade away, I was swept away instead.  The music and the flags and the people raising their hands, professing their faith publicly...telling how God worked in their life during the week.  We keep saying we'll try other churches, but we never do.  It keeps sucking us back in.

The Prayer Room last for a week and was from 6am to 10pm every day.  There were stations set up- a wailing wall to post requests.  Places to kneel.  Places to sit.  Places to stand.  Places to ask for healing. Places to ask for guidance.  Places to rejoice!  Oh my word my soul NEEDED that.  I walked into the space and just immediately welled up with tears.  When I went to leave, my son cried to come along.  And I was more than willing to bring him!  But my husband is wise and said, "Your mommy needs this.  You stay home with me."  He was right.  I did need it.

I prayed for my soul sister, Alyssa.  Her doctors told her she was having a boy, and then a few weeks later- no, it's a girl.  Alyssa has lupus.  Her joints fill up with water and need to be drained on a regular basis.  It's a painful, painful process.  She wakes up in pain literally every day.  She has a two year old daughter who needs cared for and nurtured, and Alyssa can't brush her OWN hair without help some mornings.  Her soul was sore from the disappointment of the gender reveal.  Her body was sore from the lupus.  "I'm going in to pray for you tonight."  I told her.  "We're going to find peace tonight."

When I left the room, after an hour of prayer and meditation- again.  Wow.  She sent me a video of her belly.  The baby was going CRAZY.  Alyssa said to me, "I was just asking the doctor, why am I not feeling her move- and now this!"  The scenario was reminiscent of John in Elizabeth's stomach- leaping for joy!  I'm HERE, mommy!  I'm here and I'm beautiful.  Love ME.  Alyssa said she felt enveloped in love at that moment.  The video panned to her husband, kneeling beside her, grinning from ear to ear.

God is GOOD.  He is HERE.  He is SPEAKING.

The word echoing in my head over and over: Abide. Abide in me.  Perfect love?  It drives out fear.  Fear is associated with punishment.  You're not being punished.  Life is GOOD!  I had been praying very hard about having a second baby.  The fear of bringing another life into this world was overcoming my desire to give Liam a sibling.  Perfect love drives out fear.  Abide in me.  I will give you rest.  Abide.  A baby is not a punishment.  A baby is my sign that the world will go on.  Perfectly love Me, and I will grant you Perfect Love for this baby.  Just...abide.

After the door closed behind me on the room, I took a walk.  Yeah, it was cold.  Yeah, it was dark.  But I needed the air, and I needed to say all the things I forgot to say inside those sacred walls.  I came home ready to be a wife, and ready to be a mommy.  I cannot wait to see what happens next year.

I just want to be sick.

Here's something for you-

I'm not as strong as I appear on Facebook.

Most days I push, and push, and push.  I never allow myself to be sick, or tired and I never blame anything on my MS.  I wear the MS t-shirts.  Ra ra ra, let's cure it, push harder, we're MS champions, Facebook memes and run the races, MS Fitness Challenge and...oh my word just announcing you have a disease is exhausting.

I want to go to bed.  I want to be selfish.

Every morning I take a drug called Nuvigil.  It's for people who have chronic fatigue.  That's me.  I fall asleep working, driving, talking, going to the bathroom...  It's embarrassing. I'm embarrassed by it.  I bring my coloring books over to friend's houses so I'm stimulated enough to carry on conversation. 

But I'll be honest with you.  Some days?  I just don't want to take it.  Some days, I just want to lay down and take the nap that my body is asking me for.  I ask my husband, "I wonder how long I'd actually sleep if I'd sleep as long as my body wants me to sleep."  (How much wood would a woodchuck chuck...)

Some days, I just want to be sick.  Some days, I want to call in and say "I can't today.  I have MS.  I'm also having my period now, so it's about double in intensity.  I'm slurring sentences and forgetting words.  I'm not wearing my sneakers because I took them off and forgot where I put them.  10 minutes after taking them off.  I drop footed twice today, and it makes me feel unsteady, so I'd rather lay in bed.  Is that okay?"

When you are first diagnosed with a disease, everyone jumps on your disease bus.  I may have said this before, but it's true.  There are meals delivered.  People offer to take you to appointments and babysit your kid and clean your house and... and then it stops.  Just like a new baby.  Three years into it, and people have already forgotten.  It becomes part of the scenery of your life.

I've been asked to participate in wedding planning for a relative who is getting married in the Spring.  She has a long laundry list of things I'm supposed to do.  I told her honestly, I cannot do all that.  She informed me it wasn't that much.  I wanted to remind her- I have MS.  Getting up and coming to your wedding and arriving with my family looking presentable is "that much."  But I don't say it.

I went to the grocery store with our son.  He was being three.  He was excited to be at the grocery store.  He was upsetting me.  I broke down.  "Liam, the grocery store makes mommy's MS get VERY BAD.  So I NEED YOU TO LISTEN TO ME NOW."  People turned and looked and then walked on.  (She doesn't LOOK sick...)

We are plugged with all the hoopla of "Own the disease!  Don't let it own you!"  Yeah, shut up.  Today I don't mind the title.

If you need me, I'll be asleep on the potty.

Ice Skating

I've never NOT known how to ice skate.  Does that make sense?

When I was a young one, living out in the country, there were ALWAYS, and I do mean always, a pair of roller blades strapped to my feet.  I heard it a thousand times- "Libbie, take your roller blades OFF before entering the house!"  Yes, mother.

Our house had a fairly steep driveway in an "L" shape.  It took me all summer, but one year I decided, I was going to skate the driveway.  I'd start at the top, and little by little I'd go down the driveway on my 'blades until I was confident enough to ride the entire thing.  When I was confident enough with the incline and the sharp bend in the driveway that I could execute it without falling, I went faster and faster.  No fear.

Last night Andy was feeling sick and so I took Liam ice skating.  Liam was beyond excited.  When we got there, the older boys were playing hockey and he just stared at them.  And then was scared when the buzzer went off.  And then stared at them.  He was enthralled.  He had never seen anything like that before in his tiny life.  So of course, he decided he was going to be awesome at it.

We got his skates.  Size 11- too small.  Size 12- perfect.  I laced them as tight as I could.  Popped a helmet on his head.  Slipped some hockey gloves on his hands.  He was ready.

Then he got on the ice and he wasn't so ready.  "I'm falling!  I'm not good at this!  I want to go home!"  I bent my body over his and held on to him under his arms from behind.  "You've never done this before," I whispered.  "You'll be good at it in a bit."  After a few laps, I was sweaty and he was more confident.  Not great, but more confident.

We rest at his request.  "Let's do it again, mommy."

This time my sister grabbed him under the arms and together we held him up.  Another lap.  Another rest.  "Come on mommy, let's do it again."

This time I held one of his hands and he held the wall.  "Hold me up, mommy.  I'm going to fall."  You won't fall if you listen to my instructions, Liam.  Keep going.  Keep skating.  Left foot.  Right foot.  Glide, baby, glide.  There you go!  You're doing it!

Rest.  "Okay mommy, I'm ready.  Let's do it!"

My friend took one of his hands, I took the other.  Clip clop clip, glide, clip, clop, glide, stumble, glide.  But we made it the full way around the rink.  "Again, mommy, again."

Again we went around.  "I can't" became "Look at me mommy!"  He wasn't ready to let go of my hand, but he was ready to go around again and again.  We got off the ice and took our skates off.  He cried.  We loaded into the car.  He cried.  "Mommy, I am sad you are taking me home.  Can we come tomorrow?"

I got home exhausted.  I foam rolled like mad so I wasn't sore the next day.  (I was fine, actually.  Hooray for the MS Fitness Challenge!) And I just sat back and enjoyed the memory I had just made with my little boy.  It wasn't natural for him, but he wanted to learn.  He was inspired and he felt safe enough with me to fail...and then try again.  Like, isn't that what we're supposed to teach our kids?  You can fall, but I'm here to catch you.  You're not great at this yet, but let's learn together.  I'll teach you.

I was looking at all the guys at the rink.  Big buff dudes, skating fast and spraying ice.  Ugh, thugs.  Boy in the very center of the rink- ear buds in- spotted him wheeling in his own suitcase for his skates- spinning circles with his eyes closed- amazing.  Eh, too complicated.  Too much money invested.  Spied some jocks along the wall.  Too good for everyone.  Girls swooning.  Gag.  No.  Then along skated the most understated boy on the ice.  Short and small in stature.  Skating well enough to hold his own.  Hand in the hand of the most adorable teenage girl- long braids, slouchy hat, smiles from ear to ear.  Immediately I loved them.

"See that little girl and boy?  That's why you need to learn to ice skate, dude."

Liam teaches me on a regular basis.  He schools me on not giving up and pressing on and determination in all things.  And then I'm like- wait.  He's learning that from...me.  I'm teaching him you're good enough and you're strong enough.  And you need to not give up, no matter the adversity.  He sees me getting up for the gym every day.  He sees me slopping through the mud to get to the finish line.  He's channeling that little girl who taught herself to roller blade down the driveway.

I worry that I won't be there for him when he's older.  I worry that I'll be in a wheelchair before then.  That I'll be sitting on the sidelines instead of running sprints with him.  I worry that I'll be too tired to get up to take him to practice.  I worry about all that stuff.  But I shouldn't.  Because he's learning all this stuff today- right now- at 3 years old.  Do I care if he never learns to skate?  Nah.  But I'll take that determination in his little eyes all day long.