willy wonka.

so.

today.

today happened.
and it's now tonight.
and i can't quit thinking about today.
and what happened.
it's still funny.
like laugh out loud funny.

so let me record it here so you'll laugh too.

we are at access.  max's therapy place.  he and pratt are at a little table.  in the waiting room.  we are waiting on his therapist.  they are drinking fake tea.  eating fake tea cookies.  yada yada.

when pratt says in front of God and everyone (about 10 others),

mom.  i need to poop.  give me like....2 minutes, mom.  then come check on me.  i'll need you to wipe me. 

okay.  if you're grossed out by that, then it's obvious you don't have children.  or maybe you don't have a boy.

because listen up.  he is an adult.  my pratt could move out and live on his own for like a month and i wouldn't worry.  but let him attempt to wipe his hinny post poop...well, you've got itchy butt.  and itchy butt is no good.

i won't say more.  i'll just say that.

so i told him okay.  that i would come check.

i sit down with max to play tea party.

one minute passes.
two minutes pass.

now trust me, i realize that he probably needs me by now.  but i can't leave max alone.

about the time i head to the bathroom, max's therapist rounds the corner.

problem solved.

well. as soon as i see the therapist, another young teacher comes out of the bathroom laughing.

she looks straight at me and says,

you must be pratt's mom.

you guys.  there's just no telling.

me, um.  yes.  oh no.  what did he say.  what did he do.  what did he tell you?!

i'm terrified.  there are just so many possibilities.  they are endless.

well.  i asked if he needed help.  and he said you were gonna be here soon to help him wipe because he had pooped but if i could come out and tell you he's ready that would be great.  

he told me you were sitting on the couch and looked just like willy wonka.

did you read that?
should you go back and read it again?

willy wonka.

you guys.

WILLY WONKA.

me: oh my gah.  he said that, didn't he?!

(thinking to myself, of course he did.  she DID NOT make that up)

oh yeah.  he said it.  and listen i couldn't wait to see what you looked like.  i mean, come on!

yes.
first.  willy is a man.
i am a woman.

but i've always had this fear of looking like a man.

like sometimes i see myself and think, "man.  there is a man in the mirror looking back at me."

i do.  i always have.  maybe it's from a lack of real makeup.  maybe it's because i'm crazy.  whatever.  my son just said i was a man. so maybe it's not crazy at all.

apparently it's my hair.  my hair looks like willy wonka.  the johnny depp version of him.  i don't know if that's better.  i don't think anything about this story is "good" so there really isn't a "better".

but i had to record it.  because when he's 18 and tells me i've ruined his life about something with a girl, i'll remind him of that day he ruined any and all self confidence i had when he called me willy wonka.

day...made.
such a funny kid.

apraxia awareness day, 2014.

today is apraxia awareness day.

anyone who reads my blog knows my max was diagnosed with apraxia about a year ago.  it will be a year in august, i think.  i know his hearing was checked on my birthday.  in august.  and we got the diagnosis right after that.

first, let me say that this is NOT where you need to come to figure out if your child has childhood apraxia of speech.  i'm not a speech therapist.  i'm just a mom.  of a child.  have i read everything there is to know?  probably close, yes.  but still.  i'm just going to give you our story.  max's story.  if it helps one child, one momma, one friend out there, then i've done my job.

max was born at 38 weeks.  he weighed 7 pounds, 5 ounces.  he was 21 inches long.  easy delivery.  no problems.  we spent one night in the hospital.  came home the next day.

day 19.  max started screaming.  like his face off.  like i was dying.  i wanted to give him up for adoption.  after multiple medications for reflux (which i don't believe in) and multiple milk/formula changes, we were stuck with the old "colic" diagnosis.

and let me tell you something.

that's what it was.  colic.  good ole colic.

it lasted for 121 days.  one day he woke up and didn't scream his face off from 8 am until 8 pm.  one day it just stopped.

and on that day all the angels sang a loud hallelujah.  and hannah and clint started loving each other again.  but never wanted to have sex for fear that they would produce another child with colic.  #truestory

anywho.

max turned into the best child ever.  happy.  so darn happy.  and i deserved every single smile.  because i almost killed him.  myself.  everyone around me.

i don't remember exactly when, but i noticed he was slower at milestones than pratt.  but i was told by our pediatrician that kids develop differently. so whatever.  but i felt something was off.  i knew in my heart there was more to it.

max choked on food.  A LOT.  his tonsils were a 4+.  meaning they touched.  so we had them removed.  but back up.  prior to that, he had 8 ear infections in his first year of life.  which prompted set #1 of tubes.  we've now had 2 sets.  with a total of 14 ear infections (he is 3 years old and 1 day).  that's a heck of a lot of ear infections.

he had strep 6 times.  so that explains the tonsillectomy.

we learned later that he chews his food differently.  he stuffs his cheeks like a chipmunk.  he would pocket food.  and then slowly attempt to chew it and swallow it.  this is why he choked a lot.  (plus the gigantic tonsils DIDN'T help).  he would often chew and chew.  then when we would offer him a drink, he would pull all the food out to take a drink.  people would comment on how gross this was.  i always wanted to punch them in the face when they did this.  he wasn't doing it to be gross.  he was doing it because otherwise, he would have choked and not been able to breath.  he could not keep food in his mouth AND take a drink at the same time.  (this will make more sense later).

max didn't sit up or crawl or walk early.  or even really "on time".  we often called him "lazy".  he would let you hold him and he didn't hold himself up at all.

i can remember grocery shopping and having to really prop him up in the buggy.  because he would just slump over to one side.

he didn't babble as a baby.  i thought it was because of the all the ear infections.  kids babble because they hear things.  he wasn't hearing jack with all those infections (i thought).  so he wasn't babbling.

at 2, he had maybe 2 words he said.  momma (sort of) and at (pratt, cat, ???)  that was it.

he drooled.  a lot.  he rarely closed his mouth.  he would leave it open and drool would just escape from his little lips.

he couldn't blow bubbles.  he couldn't blow a whistle.  his lips didn't seem "to work".  he couldn't pucker up for a kiss.

he "w" sat.  this means he bent his legs backwards and sat that way.  i learned during pt that children sometimes sit that way because it keeps their abs from being engaged.  he DID NOT walk up or down stairs.  refused.  he couldn't walk down an incline.  he didn't walk down hills.  or uphill for that matter.  he never ran.  or skipped.  or jumped.

a lot of this was stuff i realized when we started physical therapy.  he was diagnosed as low muscle tone.

now.  my school psychologist background is killing me right now.  because i've labelled all the things that max "can't do".  or "does differently".

so let me tell you what else he did.

he tried.  every single damn day, he tried.  he would attempt to run.  he would attempt to go up the steps.  he would try.  he would catch himself drooling and catch it with his hand.  he would look at you with guilt.  like he knew he wasn't supposed to that.  like it wasn't normal.

and after a while, he seemed to give up.  he became more quiet than ever before.  he stopped chatting all together.  he was silent.  he pointed.  he would take your hand and lead you where he wanted to go. but he JUST DID NOT attempt to verbalize anything.

it was heartbreaking.

around this time, he was getting speech here in our town.  our speech path came to me and said she thought he had apraxia.

okay.  let me say something here.

about labeling.

max HAS apraxia. just like you might know someone who HAS dyslexia.  or someone who HAS autism.

they are NOT autistic.  autism DOES NOT DEFINE THEM.  so can we please change the way we  say that.  if nothing else, remember that.  these things don't define these children.  they are children FIRST.

(hopping off the soapbox).....

she tried to do "typical speech therapy" with him.  but he wasn't progressing.  and he should have been by this point.  we weren't even up to a 5 word vocabulary.  and he had been going to speech for several months.

so she was wonderful and basically spelled it out for me.

access school in little rock.  just go.  just take him and go.

so that's what we did.

we got a diagnosis.

childhood apraxia of speech.  oral and verbal.

meaning his mouth didn't work properly and that his speech was affected.

we applied for TEFRA (secondary insurance for disability).  we were accepted.

max started speech therapy at access.  he goes 4 times a week.  for an hour each day.  so he gets 4 hours a week of intense speech therapy.

yesterday, on his birthday he looked at me at hallmark and said, "i hold and smell".  he wanted to hold the candle and smell it.

you might think that's normal for a 3 year old.

it might be.

but listen.  it is EXCEPTIONAL for my max.

because he is a rockstar.

and he has worked his tailbone off.  and he WILL be talking in full sentences soon.  like full sentences than ANYONE can understand.  i'm sure of it.

his speech doesn't sound like the average 3 year old's speech.  it's rhyming often. he drops the first syllable a lot.  this is apraxia.  that's common.

i'll link here a great site for more info.

again, i'm just a mom.  and so my story might be different than yours.

but i'm a huge proponent of early intervention.

there was a time when clint and i would lie in bed and worry.  we went through every possible diagnosis.  i knew he wasn't showing signs for MR or autism.  but there were times when he had blank stares.  times when he looked right through me.  there were and still are times when i feel he ignores me.  like doesn't hear me talk.

i know now that is normal for him.  i know his hatred of the vacuum cleaner is normal.  and okay.  he covers his ears when he hears loud sounds for a reason.

knowledge is power.  i can help him because i know this stuff.

if you're worried about your baby, let me tell you something.

that's good.  because it means you love them.  and it means you're a good parent.  don't sit on it.  do something.  find someone to help.  find someone credible.  don't accept a label.  don't worry about being offensive.

you are his/her only voice.  so be a good one.

if i can help, let me know.

my email is hannahfielderfulks@yahoo.com

through all of this, i know one thing is for sure.

i get more satisfaction from knowing that i've helped someone than you could ever imagine.

i still have hard days.  hard nights.  when i put him to sleep, i keep waiting on the night when he will say, "i love you momma".  we are almost there.  "love you" is there.  i yearn for the day when he cups his hand over pratt's ear and whispers a secret.  i pray that soon he can call my mother and talk and talk without her wondering what he is saying.

i will throat punch the first kid who makes fun of him talking.  i will.  i really will.

my friend joanna has said that max will change the world.  that he will be very influential one day.  i believe it.  i'm claiming it.  i know that i'll look back and laugh that i ever worried about him.  that i ever worried about him talking to me.  or to pratt.  or to anyone else.

i am thankful God saw me fit to raise this child of His.  i am thankful He thinks i'm good enough to love him and show the world how special he is.

yesterday, on his birthday, my sister sent me this text.  it's beautifully written.  and captures hers and max's relationship to a t.  i have to share it.

"you have touched more lives in your 3 years than most do in a lifetime".  i mean, are you balling your eyes out?  the craziest part?! it's probably true.  xoxo sugar pie.  xoxo.

if nothing else, just know that if you're feeling it, i've probably felt it too.  one of us has.  and you're not alone in this.  there is help.  good help.  you just have to be big enough to ask.

thanks for reading.  max says thank you too.

dear boys.

dear boys,

sugar has a friend who is losing a battle with cancer.  she has fought and fought.  and it's just taking over.  and it has gotten me thinking about how we never know how long we have here.  and i could go to heaven tomorrow.  or today.  or in the next five minutes.  we just don't know.

and so i know this is trite and maybe silly.  but i feel like in my 34 years i've learned a few things.  things that if you'll pay attention to early...you'll have an easier life than me.

so take this advice to heart.  okay?  okay.  thank you.

there will be things in your life you think you JUST HAVE TO HAVE.

like let's start with now.

toys.  fish.  turtles.  frogs.  lizards.  new light up shoes.  new bikes.  cool shirts at target.  dollar store stuff.  mcdonalds happy meal toys.

i could go on and on.  as you get older, it will change.  you'll want a certain type of four wheeler.  or a car.  or you'll want the new sneakers all the cool kids are wearing.  you'll want to be friends with certain kids.  or to go to a certain college.  or to get into a certain fraternity.  and on and on and on.

and while those things will seem of the utmost importance, one day you'll look back and realize they were just that.  they were things.  not tangible.  not lasting.  they didn't do anything to really make or keep you happy.

there will be things about yourself you wish you could change.  like maybe your name.  or the way you look.  or the way you think.  or act.  or feel.

i know this so well.  my prayer has always been that because you are boys, you won't struggle with this like i did.  so let me tell you this.  about girls.  be kind to them.  no matter who they are.  being a girl is hard.  we often look at ourselves and wish we were different.  some of this is internal.  not anyone's fault.  but some of it too is probably because we've heard someone compare us to someone else.

so don't ever compare.  don't compare yourself.  and don't compare your friends.

we were all made how God saw fit.  we are perfect in His sight.  remember that.

so that's a lot.  but i have good news.  i have learned a few things along this path of mine.  and so here is what i know.

about happiness...

happiness comes from helping others.  happiness comes from being in a position where you CAN help others.

jen hatmaker (you don't know her now, but surely by the time you read this, she and i will be best friends and so you'll be all, "oh jen.  yeah mom...jen") says that the purpose of life has to be measured by a truth plumb line.  and that is this, "if it is true for a single mother in haiti, then it's true for me".

so.  what's the meaning or the purpose of life?

money?  making money?  having enough money?

no.  because that's not what a single mother in haiti is doing.  she's not making money.  she's not buying ridiculous things.

a house?  a big, gigantic house?

no.  of course not.  RIDICULOUS.

a good job?

no.  back to the mom.  is she working at some important job?  probably she's not climbing the corporate ladder.

an education?
children?
being a parent?

no.no.no.

you know what it is?

our purpose in life is to be loved by God.  to be loved.  and to turn around and love right back.  love those who aren't loved.  love those who seem unlovable.

and in doing so, we show the love of God.  and we draw them in.  and we introduce them to our Jesus. the Jesus who loves and forgives.  the Jesus who has an easy yoke.

and we love.  and we are loved.  and we are happy.

see how easy that is?

it seems like it.  and i think most of the time it is.

but here's the trick.

you have to find someone else who feels this way.

someone else who thinks that this is where happiness comes from.

your daddy does.  and i do.  and so it works.  i got lucky.

i don't know who you boys will marry.  but whoever that is, please make sure they believe this too.  because it's a long, hard path doing it alone.

so in review.

do something that makes you happy.  your talents will carry you wherever you wish to go -- but choose a path that helps others, and your own happiness will be assured.  

you know who said that to me?  pop pop.  in a letter dated, may
5, 2001.  a letter he wrote me on the day i graduated from college.  he's a smart man.

live by that and you'll know true happiness.  and you'll love.  and you'll be loved.

and boys, there is just nothing better.

i love you both so, so much.
xoxo,
your momma.

happy birthday party to my max wesley.

tonight i was putting max to bed.

his third birthday party is tomorrow.  his actual birthday isn't until tuesday.  but his party is tomorrow.

and i was asking him if he was excited about his balloons.  and the cake.  and the guests.  and the games.  and crafts.  and everything i'm not in charge of because his incredible school is doing it all.

he's excited.  and giggles and shakes with excitement when i mention it.

it's been a long time since i've documented what my max is like these days. and i think now is an appropriate time to do just that.

he is "talking" more than ever before.  a lot of this isn't recognizable by everyone.  but clint, pratt and i have gotten really good at figuring it all out.

he's been saying, "more (fill in the blank)" a lot lately.  even "more cheese please".  which is a huge.  because that's a total phrase.

he asks about pratt every morning when he wakes.  if he isn't downstairs already, he will say, "where at?" and when pratt leaves for preschool, he does the same thing.

he's not shy about attempting to talk anymore.  he will try to say anything.  and if you don't understand, he will physically take you somewhere until you get it.  and when you get it, he will smile at you like you've made his day.

his smile is unlike anything i've ever seen before.  pratt was a really happy kid.  that's not what this is.  it's more than that.

i have decided it's his way of telling me he's okay.  that even though he doesn't talk like the other kids his age, he understands and wants me to understand that all is well.

maybe i'm dreaming.  but i hope i never wake.

he has this way of looking off and smiling.  like he's thinking.  it melts you.  totally and completely melts you.

he's also a bit of a pain in the hiney.  like he will straight up not speak to people.  and it drives me bananas.  pratt has NEVER IN THE HISTORY OF THE WORLD not spoken to someone.  it's not in his DNA.  max.  nope.  he will take it or leave it.  he's NOT spending his time worrying about someone else's feelings.

he can eat until you force him to stop.  one of his favorite foods is broccoli. he loves raspberries.  and anything from chick fil a.  today i caught him sniffing the chicken finger box.  yes you guys.  sniffing it.  hilarious.  he loves blueberries and blackberries.  he loves string cheese.  and bananas with peanut butter.  he loves honey toast.  and edamame.

he's maybe close to potty training.  i don't know.  some days are better than others.  if he's busy doing something, you can forget it.  if i take off all his clothes, he will find a potty before going.  i should be better about it.  and i will.  because i mean, he can't be 3 and not potty trained.  well, he CAN be.  but he shouldn't be.

he LOVES playing outside.  in the dirt.  in the water.  in the mud.  in the grass.  on the swings.  in the mancave.  you name it, and he loves it.  he loves to pick flowers for me.  and bring them to me smiling the whole way.

he loves rachel, his incredible speech therapist.  he loves going up there four days a week.  he never wants to leave.

he's a happy, healthy, smart little boy.  and i cannot imagine my life without him.

had you told me four years ago that he would be pretty nonverbal.  and have a severe speech delay.  with a lot of other "labels", i would have laughed.  and told you whatever.  and i would have stayed up all night trying to figure out what i was supposed to do with that.

but i'm here now.  in the midst of it.  i'm in the arena.  i'm marred with dust and sweat and blood.  i'm tired.  and there are days when i want to give up.  but i remember that this is bigger than me.  it's bigger than my ego.

in fact, it's not about me at all.  it's about a little boy who depends SOLELY on his mom and dad to do the right thing.  and so that's what i'm attempting to do.

and you know what, it feels right.  it feels normal.  it feels like it should.

max is what life is all about.  embracing what God has given us.  loving what He thought we needed.  NOT what WE thought we needed.

happy almost third birthday to my sweet max.

i love you more than i love oreos dipped in milk.  more than i love trips to barnes and noble.  more than i love the smell of coffee in the morning.  i'm blessed to watch you grow.  and learn.  i cannot wait to see what else is in store for you.

xoxo,
momma.

first mistake.

i woke from a dream where max talked.  where he talked and talked and told me what he wanted for lunch.  where he would silence pratt because he just wouldn't give up until pratt just flat out stopped talking.

he told me he loved me.  when i kissed him at bedtime, he said, "i love you too mom.  see you in the morning.  good night."

he talked to his friends at school.  he called my parents on the phone.

basically i had a dream where he was a typical, average 3 year old kid.  (we are less than one month from being 3).

when i opened my eyes, i felt as though someone had punched me in the gut.  knocked the wind out of me.  i wanted to cry.  i wanted to roll over and bury my head in the pillow and scream that it wasn't fair.

about a minute into my 34 year old fit, i remembered yesterday.

i remembered him walking away from the big koi pond at the siamang exhibit and turning to another body of water and saying (clear only to me and pratt), "mom! more fish!"

it was then i took a deep breath.  i steadied myself.  i remembered a quote i have seen somewhere.  access?  a bible study?

perseverance is not a long race.  it is many short races one after another.  - w.elliot.

i know better.  i know in my heart he will one day talk.  i just know it.

but this waiting game.  sometimes i think that God might have the wrong mom.  that he might have made his first mistake.  because this waiting and this patience...it's hard.

being a parent is the hardest thing ever.
it's also the best.

and for that, i'm so thankful.

and this picture is so funny.  and appropriate.  there's pratt. with his map.  and his arm around max...even leaning in.  smiling.  doing exactly what i ask.

and then there's max.  hat tilted.  shirt unbuttoned.  leg cocked.  and arms in back pockets.

night and day.  night AND day.  so blessed.

maybe too much.

a friend of mine lost her 16 month old son a week ago tomorrow.

his name was hudson.  her name is sarah.

for as long as i can remember, my father has told me to put myself in someone else's shoes.  and walk around.  see how it feels.

i do that to a fault.

as in, i sometimes do that so well, i am literally stuck for days.  unable to get past something that i'm not even personally dealing with.  i mean, i am.  but i shouldn't be.

in my mind, i can justify this because so many people are without empathy.

and so i think God just saw fit to give me 5 (read 500) times the normal amount.

with that being said, i have NEVER hurt for anyone like i hurt for sarah.

don't hate on me for this...but until you've grown your own child.  until you've carried him in your womb for 40 weeks.  until you've nursed him.  held him.  worried about him.  until you've been up hours on end without any kind of break, you won't understand this.

i'm talking about holding him.  smelling him.  hearing his heartbeat.  feeling him next to your skin.  rubbing the hair off his forehead over and over and over again.  kissing that space where his chin meets his neck.

until you've clipped his fingernails all the while trembling with fear that you'll clip his finger.  until you've jammed a thermometer up his rear so that he will finally poop.  until you've been puked on.  peed on.  screamed at.

you just won't get it.

i can close my eyes and see my boys.

i can see their eyes.  and their noses.

i can see the way max squinches up his face.
i can see pratt smiling with his whole being.

and so tonight, when i saw that sarah said she just wanted to kiss hudson's face one more time...well, that's when i just lost it.

that's when i question everything i know.  that's when i scream at God and beg him to explain why that child had to go.  why would He do this to sarah?  why?  why not take someone else.  anyone else.  take someone who has lived out their life here.  take anyone but not that 16 month old angel.

pratt has this fear of heaven.  it's familiar to me because until about 6 years ago, i felt the same way.

he doesn't want to go.  why?  for the obvious reasons.

this earthly life is incredible for him.  he gets toys.  and presents.  he stays up late.  he loves preschool.  he has good friends.  he eats good food.  he goes to the cinema to watch movies.  he goes and visits his grandparents.  he takes trips.  he is healthy.  he is well taken care of.

he swims in the summer.  he plays in the snow in the winter.  he is living the life.  his life is better than pretty much anyone else i know.

heaven?  well, it's not tangible.  it's not clear what it is.  and he fears...most of all...that it will separate him from his mom and dad.  and that to him, well, that is terrifying.  and not anywhere he wants to be.

i can remember as a kid hearing the end was near and worrying.  not wanting it to happen.

now, now i would give anything for Jesus to return tomorrow.

i don't need to live another day.

why?

because what in the world else is going to happen?!

i mean, the good no longer outweighs the bad.

i know too much.  i've come too far.  i'm too old.  i've become such a cynic.

i have...sort of...seen behind the curtain.  i know what's there. i know the pain that exists.  i know the emptiness.  and the loneliness.  i know the hurt.  and the sorrow.  i know it all.  and i don't like any of it.

i'm struggling to figure out how i do my life here.  does that sound silly?  probably.  but it's true.  how do i stay positive?  how do i act like i'm okay to these two boys who love this life so much?  how do i fake it?  because that's where i'm at right now.  faking it.

i won't always be here.  eventually i'll be in another season.  a season where i am bigger.  and stronger. and i have this answered but something else will seem abstract and unattainable.  and i'll struggle through that.

more than anything else, i'm asking for grace.  because if you see me and i'm crying for no reason...you should know that it's for good reason.  just reason i can't explain.

i prayed that God would allow me to really feel his people.

it worked.
maybe too much.

night.

Last night I went into max's room to put him to bed. I expected to find him playing with his trains. Or with the kitchen stuff. Instead, when I walked in, I saw him standing there, facing the bookshelf. 

I could hear him humming. Like, "hmmm. What to read!!?" 

He grabbed a llama llama book and the went for two puzzles. 

My heart nearly exploded. 

I never ever want to forget that sight. Him. In his footed jammies. Picking out a book. It all goes by way too fast.