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.

Introvert

There are many, many words people may use to describe me.  I'm not going to list them.  But ask someone who knows me to describe me and make your own list.

Introvert?  Not even close to being on that list.  Not even the long list.  I enjoy going out with people.  I get excited about visiting places.  I enjoy meeting new friends.  I'm not "shy" and I'm definitely not "quiet."  Except for those times my MS is owning me.  Which it has been.

The scene is my BIL's apartment in Providence.  He shares it with his room mate, a gay man who is in love with a woman.  The apartment is perfectly decorated in a kitschy Art Deco- everything is there for a purpose.  Everything in the home has meaning.  The fire is roaring.  The bar area is lit in a romantic glow.  No actual overhead lights in the home except the kitchen, which is a flurry of activity as my BIL cooks his little heart out.  The music is about two decibels too loud, but over the laughing and the merriment, it's...still two decibels too loud.  The windows are open, because the fire is so intense for the tiny space that it becomes a distraction.  My son is taking this all in.  He's starving.  It's almost 8 and we haven't eaten.  I'm busy feeding him cashews from the bar because there's no kid food in sight.  He sits there like a little man, drinking juice from a tiny glass out of a tiny straw.  He doesn't mind any of this, of course.  It's all new and fun and loud.  To him, it's an adventure.

Room mate's love interest comes.  She doesn't just enter the room, she comes in and takes it over with her mere presence.  Everyone cheers her name.  I see her fancy shoes and immediately know she's out of my league.  She says things like "oh honey" and "be a doll and" and "aren't you scrumptious."  She's a Gusher.  My head is on fire.  She sits next to me.  Liam is done with supper.  He hasn't eaten anything.  He doesn't like it.  I'm starving and there's salad.  I ate four helpings of salad.

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What people don't know is that my day up until that point was a living nightmare.  My MS is flaring in ways it never has before.  I'm recovering from my grandmother's passing and crying.  Every.  Day.  The night before, Liam was up coughing all night so I slept sitting up with him in my arms.  The next morning my husband and his brother head off for the Comic Con and manage to wake Liam up at 8am with them.  He wakes up running and never stops.  It's 1:30 and we haven't eaten yet.  He's starving.  He throws FOUR TANTRUMS in public.  I spank him three separate times after MANY failed attempts at quieting him.  I buckle him in.  He unbuckles himself.  People most likely think I'm abducting him.  He stiffens himself out like a board.  Screaming.  My MIL intercedes by grabbing his arm.  I shoot her a look that she seems to understand.  Let.  Me.  Parent.  He doesn't want food.  He doesn't want anything.  He's exhausted.  I take him home for a nap.  He's not sleepy.  He jumps up and runs away.  I catch him.  He turns the light on.  I turn it off.  He turns it on.  I say no.  He says "I'm the boss."  I say no.  I grab him and hold him against his will while he's screaming and kicking me.  "You're MEAN!  MEAN MOMMY! LET ME GO!"  No.  You will sleep.  You need to take a deep breath.  He doesn't want to breathe.  HE wants to be angry.  I cuddle him up and rock him to sleep.  The car he's been clenching in his tight little fist all afternoon falls from his hands and he's out.  I sit there and watch him sleep.  He's beautiful.  He sleeps for 1.5 hours and I watch him.  He wakes up screaming.  Nightmare.  He doesn't know where he is.  Screaming.  No consolation.  Screaming.  Here!  Have the Kindle! Anything.  Please, calm down.  Time for a shower.  He doesn't want to take a bath.  He runs to the bathroom.  Screaming.  Screaming.  Screaming.  I know my inlaws can hear it all through the floor.  No bath.  Yes bath.  I take his clothing off of him.  Screaming.  He throws himself around.  Fourth spanking of the day.  We do not act like that.  You will get in the shower.  You need to breathe.  "I not want to breathe."  And so we're in the shower together, because I have no other way at this point, and he asks to be held.  He breathes deep with his hands on his belly.  "I love you mommy."  I love you Liam.

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When you have MS, social situations can seem like you're tripping on LSD or something.  Like you're listening to Pink Floyd while watching Wizard of Oz.  So I've got about 20 things going on in the room.  Candles everywhere.  Fire roaring.  Son not wanting to eat.  Music.  Food.  Eccentric guests.  Loud voices...Music.  10 people at a table for 4...Son wanting to play.  Where are the toys I brought...so hungry...darling where'd you get that dress...music...mommy I'm hungry I don't like this........can you pass me the........if it's not too much trouble............shrieking laughter..........clapping.......music music music....honey don't touch that.......bite of food......breeze from the window........take a bite of the music.......candles....don't touch that.....tell me a little about yourself.................................................how are you.......what do you like to candles......music.......breeze.......don't touch that...........so you work in.............oh Libbie can do that................Liam you need to eat......................at last my life is like a song......................please don't touch that................................................................everyone talking at once...................andy he had a terrible day I couldn't eve............oh your grandmother just died........................I'm sorry.............hug me........................mommy....................................................music.............................................fire..................................................................this...............is................not...................fun.....................
and then they wonder why we don't like going out in social situations.

The Gusher asks me where I got my dress.  "Ann Taylor.  Clearance.  Gift card."
The Gusher asks me where I get my son's clothing.  "Consignment."
The Gusher asks me how I like my short hair.  I touch my hair.  I hadn't styled it.  "I like it."
The Gusher asks me if we're having more children.  "Maybe?  Not now."
The Gusher asks if it was a medical concern.  "I have MS."

Silence.

And here it is.  The huge elephant in the room.  Gusher of course gushes.  Tells me I'm beautiful.  Asks if it's terminal...  terminal...really?  Grabs Andy's hands and tells him she's SO SORRY.  This must be SO SAD for him.  Then she calls her Uber car.  She drinks another glass of wine.  Someone spills her glass of wine. The party stops so they can clean it up.  The moment is over.  I take my glasses off, hoping they're adding to the insanity and lack of clarity of it all.  It doesn't help.  Gusher's arm movements are too big for the tiny apartment.  She leaves.  I think I like her...I think she'd like me if I wasn't flaring so badly.  If I hadn't spanked my child 4 times that day.  If I had not spoken of myself and turned the conversation back to her.  If I was on my A game.

"I know all about MS."  Room mate exclaimed in a wine-drunk kind of way.  "The mylar is being eaten by your immune system and you have to take shots and shit.  Interceron and all that."  Yes.  Mylar.  Like a balloon.  Shots and shit.  Exactly.  Interceron.  You're an expert. Clearly.  "My MS has made me what I am," I said clearly, "I own it.  It's mine.  It changed my life.  It changed our marriage.  Andy and I fight it together."  "WHY would you celebrate that?"  He slurred.  "You have faith in GOD, so why not just celebrate that by His stripes you are healed?"  I stared at Andy.  Gusher threatened to call for an Uber again.  Room mate assured her he was fine to drive.  Liam asked to pee.  Pee.  Uber.  MS.  mylar.  interceron.  faith.  the music is so loud.  We need to go.

I didn't say goodbye to anyone.  The stairs in the place are ridiculously treacherous.  I told Liam to go down on his butt and not stand up no matter what until he got to the bottom.  I held on to the walls as I inched my way down, mentally calculating how to fall the most agile way, so as not to create ruckus, should I fall.  I didn't fall.  I breathed in the fresh air.  Over.

"I wish I was the woman you married."  I whispered to Andy in the car.  "I wish this wasn't me."  He held my hand.  "I know."  He said.  "I know."

And in the end...

My grandmother passed away on October 29th at around 7:45 in the morning.

She went peacefully.  With my grandfather's name on her lips.  She knew where she was going.  She knew what she was going to do when she got there.  She wasn't afraid.

Tomorrow it will be a week.  My dad and aunt went to get the ashes from the funeral home, and brought them back and promptly sat them on her mantle.  The urn is cold and gray and decorated with what looks like a Greek pattern.

We all came to her house last night and took things that were meaningful to us.  I felt like the Thenardiers from Les Miserables.  Who wants this?  Anyone interested in that?  You want back this thing you gave her? 

Clothing was taken from the closets and put in large black trash bags.
Jewelry boxes were opened and displayed.  Nothing of real value, except sentiment.
China cupboards were emptied and the contents arranged haphazardly on folding tables.
We all walked around with our hands behind our backs, surveying the loot like museum artifacts.

Everything came with a memory.  Things that did not hold sentimental value were put in a pile to be donated along with the toaster and the like.  As we would touch objects, we would recall the moments we remembered with them.  The coffee mugs.  The items she would ALWAYS have on the coffee table.  The things she had hanging on the walls for as long as any of us could remember.

I remembered this key chain she had- pappy gave it to her.  It had a $20 bill in it ever since I could remember.  She said it was there for an emergency.  An emergency she never had, apparently, because when we went through her purse it was still there.  Her purse was actually stolen once in a store.  The robbers took her wallet and chucked the rest of the purse out of the car window.  They should've kept the keys.  There was probably more money in the key chain than in her purse.

We also came across all this stuff she never used.  Like.  Ever.  Like, hadn't seen the light of day since their wedding day.  She had everything labeled- that was her thing.  Little tiny bits of paper with her polite handwriting on them.

"Bought this from a little old peddler man.  My first real ring."

"The scratches on this chest are from Newton jumping up on it to look at the window."

"Candles given by maybe Francie Frank I'm not sure."

And on and on.  Everything was a treasure.

Liam wanted in on the action, of course, and so I told him he may only pick the things that made his heart sing.  "If you pick something up and you can feel your heart sing, you may ask permission to have it.  Everyone needs to be mindful of everyone else."

He came home with a coffee mug, a small blue vase, a baby food maker, some wind chimes and other outdoor items, kaleidoscopes, some small cars, and a pocket knife in the shape of a train.  Some absolutely amazing treasures for a 3 year old boy.  He held the pocket knife in his pocket like it was going to jump out and fly away if it wasn't grasped tightly.  He was so proud.

I took silly things.  A cup I remembered drinking from.  Door stops I had always admired.  A locket I found.  Some wooden boxes I thought were cool.  The glass bottle of water she always kept next to the fridge because she didn't like cold water.  A few boxes of table linens she never ever opened.  Everything odd and old and precious to me. 

Andy was given his choice of pocket knives and also requested a signed head shot of a band leader from the 40's.  She had apparently sent away for it when she was young because the envelope only said her name, the street she lived on and the town.  Who needs a house number?  He quietly followed me around the house, taking objects from me and carefully arranging them in boxes to be taken home.

By the end of the night I had six boxes, a small side table, and a bench my grandfather made.  It was sobering at best.  I had never wanted anything at my Nanny's house but Nanny.  Her giggle.  Her laugh.  The way she would get down on her knees and play with her GREAT grandchildren.  The way she loved Pappy.  And us. And Liam.  How she'd never smile for pictures because she always hated her smile.  How she always dreamed of red hair and freckles...

Those things can only live in my heart, not in my home.  So I will take this moment to re-evaluate.  Why am I keeping clothing "just for nice"?  Why do we have dishes we never use?  Use them!  Because it's not the boxed items that people went for first last night- it was the worn stuff.  The table with the scratches.  The dumb plastic cup you always reached for.  Those are the things that create memories- not the linens that haven't been out of the box since the 40's.

And in the end, the love you take is equal to the love you make.