my max.

i'm not sure that i've really posted much about therapy for max.

he goes tuesday, wednesday, thursday and friday.

for an hour.  we drive 30 miles into little rock...drop him off.  i either wait there (if pratt isn't with me) or pratt and i figure out what to do for about 35 minutes.  then we go back and get him.  we pick him up.  drive 30 miles home.  make lunch.  eat.  and then do crafts.  play outside.  etc.

napping for max is no longer happening.  which is okay.  because his behavior isn't affected until around 630...then things start to get ugly.  but oh well.  that's life.

to say he's thriving is an understatement.

max's vocabulary has gone from 2 words...to maybe 50.  maybe more.  and let me be clear.  his words wouldn't sound "right" to you.  but they would rhyme.  and he is making an audible noise.  which is what we are shooting for at this point.

he will literally try any word you throw at him these days.

i know that sounds so weird for some of you parents.

but until you have a child with apraxia...you DO NOT have any idea how quiet a child will be.  you don't know what it means to see a 2 year with low self esteem.  a child that young, who is already turning inward...because he already knows that something is different.  that he sounds different.  that people react differently to him.  ugh.  heartbreaking.

but the good news is that these days, max jibber jabbers all the time in the car.  this morning going to school, every 5th word i said to pratt, max repeated.

pratt and i just can't get enough of it.  it's so wonderful to hear.  any attempt of his to say anything is met with sheer delight from us.  we scream.  we clap.  we tear up.

this weekend, we got notice that max has been approved for tefra.

for those of you who don't know what that is, let me see if i can make sense of it.

it's a secondary insurance for kids with disabilities.  it's through the state of arkansas. (thank you, natural state) it's not income based.  so anyone can get it.  you must apply for it.  and by "apply", i mean fill out like 60 pages about your child.  then 60 more pages online.  then make sure it all arrives like it should.  it goes through a case worker.  then a board that will review it.  and decide if it seems "bad enough".  yes.  that's right.

i was told early on, to be honest about his condition.  and when i read the report from the SLP, i cried.  because his apraxia was labelled as "severe".  that's just never a good word.

so when i opened the letter from the state, and saw, "This is your NEW medicaid card", i cried.  for many reasons.

one.  because it meant that his therapy would be covered (they were out of network for our insurance).  and it's over 100 dollars an hour.  and he gets 4 hours a week.  so you do the math.

and two.  because it really does mean that they thought his condition was "severe".  and that to me is scary.  so damn scary.

but i keep going back to what my friend joanna said to me.  it was this,

i have noticed an improvement in max just the little bit that i am around him.  i know it has to be hard but someday max will be able to use this to reach others.  God has a plan and this setback is part of max's story.  

it's things like this that get me through.  i really do have the best friends.  thank you, joanna.

because not every day is easy.  there are days when someone will say, "how OLD is he?!  two!?  wow.  he's so quiet for two.  what's wrong with him?".  that kind of crap.  and right when i want to punch someone in the face, i remember myself.  pre the diagnosis.

and i remember that when i was younger, i would see kids like max and wonder what their mothers thought.  (hang with me...i'm gonna be honest here.  so don't hate.)

and i would wonder if they wished for things to have been different.

you know.  did they wish that their child looked more like other kids?  did they wish their kid sounded like other kids?  did they lay in bed at night and complain to God about the lot they've been given? about the child's poor health.  etc.

because i assumed they did.

and then i had max.  the kid who doesn't "sound" like the other kids.  and i had him second.  so i KNEW what it meant to have a first child that literally hasn't failed at ANYTHING he's tried.

and in the last few months, i've realized that he is absolutely perfect JUST THE WAY HE IS.  right now.  at this moment.

i'll catch myself looking at him, in the midst of other kids his age, and i'll pray, "thank you God for giving him to me.  thank you for trusting me with this angel.  thank you for sending him down just like he is."  because to me...he is perfect.  he is mine.  he was meant for me.  and i am so thankful.

so the next time you see someone and wonder what to do...don't.  just smile.  and say hi.  and don't question what's wrong.

because to that child's parent...there is nothing in the world wrong.

thanks for coming on this journey with us.  it takes a village, right?