Weight of a Scream

*screech* 

*SCREECH*

*SCREEEEECH*

our ears ringing

his throat throbbing

*SCREECH*

*SCREEEEECH*

trying not to react

not to flinch with each 

sharp 

ear-splitting

*screech*

trying to show

it doesn't bother me

trying to show

it's fine

hoping he knows

he can relax

not stress

not worry

be calm

breathe

*SCREEEEECH*

*SCREEEEECH*

*screech*

silence

then

a

sobbing breath

glancing to see

head bowed

tears falling

*screech*

*sob*

a back rub

a gentle hug

redirecting focus from

*screech*

to music

closed eyes

moving fingers

a musical melody

to lift the weight

of a scream

Breaking Down

This momma's heart is hurting. I witnessed my son break down last night in the midst of out-of-control tics. It also broke me.. and brings tears to my eyes still today.

Loud yells.. attempting to muffle by keeping his lips pressed tightly together..
Pacing along the back wall of the kitchen..
Banging the trashcan lid.. dirty campfire forks poking out of the sink.. the counter..
Almost a growl as he tried to regain control..

*inhale*
*exhale*
*blink.back.the.tears.momma*

I can't even begin to imagine what it felt like to be inside of his body last night.. to be inside of a body that you can't control.. to have a voice that you can't control..
It was hard to see him struggling so much.. to see him sitting in defeat on the couch.. still trying to muffle the yells through pressed lips.. tears falling..

http://www.larrypatten.com/2013/10/24/tears-part-2/setwidth600-angel-tears-medium2/

*damn.tears.again*

All I could do was wrap him in my arms. I held my son while his tears fell on my shoulder.. trying to keep my tears from falling on his shoulder.. All I could do was hug him and wait for it to ease up.. wait for it to pass.

*tears.prickling*
*again*

I'm aching for my child.. for the struggles he faces with these uncontrollable tics..
I'm hurting for my child.. as he deals with people who don't understand.. and especially the people who don't care to understand.. and even more so, the people who say they understand, but really don't understand anything at all..
I'm scared for my child.. for the unknown of what is to come..

And I'm Angry. I'm angry because I can't make this go away. I can't FIX this for him.
I can't Make everyone "get it." I can't stop people from mocking and mimicking him. I can't stop the tics.  I can't even slow them down except by throwing medication at him and hoping the side effects aren't too awful. I can't do Anything but hug him and love him and pray and hope.. which are all thing that I know are Huge for him.. but feel like Nothing to me. It's not enough for ME. I'm angry that I can't do more.

*damn.it*

A Stranger's Smile

Dear Crossing Guard,

My children don't attend the public school. My children aren't among the many that you help safely across the highway each morning.. but I see you at your corner on my way to work. I've seen you every school morning for the past several years.

Overcast mornings..
Rainy and snowy mornings..
Sun-shiny mornings..

Blustery cold winter mornings..
Crisp autumn and spring mornings..
Steamy hint-of-summer mornings..

You are there waiting for the children to come to your corner. You greet them all with a smile before they continue on to school. You are a bright spot in their day.. I'm sure of it.
I'm sure of it because you are a bright spot in my day. I look forward to catching my own quick smile and wave from you as I pass by also.

There are mornings that we don't catch each other's eye. There are mornings that you are busy with the children.. but there are mornings that I pass by when you are waiting.. and those are the mornings we share a smile and a wave. I'm not sure you realize just how much I've come to look forward to this quick exchange in my morning. I'm not sure you realize just how much that smile and wave mean to me.

Your smile and wave lift my spirits.  On mornings that don't go as planned, mornings that are filled with grump and chaos at home, your smile and wave calm me.  On mornings that I'm feeling sluggish or melancholy, your smile and wave are like a warm hug.  On mornings where all is 'right' with life, your smile and wave brighten my morning even more. Every morning I look forward to sharing a smile and a wave with you. Every morning. Your smile and wave brighten my day.

Thank you, Crossing Guard.
Thank you for helping countless students safely across the highway each day. Thank you for offering your smile to them.. and for offering me a smile and wave as I pass.
Thank you for being a bright spot in the world.

sweet girl

i knew it right away

and still

i messed up

i should have stayed silent
should have taken a breath
should have stopped
should have taken a moment to calm myself
but the words spilled out

missed connections 

distance that i wish was not there

oh sweet girl 

close to my heart but far from my arms

those moments on repeat
going over them again and again
i know what to do
what not to do
promises made to myself
promises to you

i yearn to wrap you in my arms

sweet girl

to show you my love

to heal the hurt

you bring such joy

i wonder if you realize

just how much i treasure

laughter bubbling up and overflowing

radiance shining from your smiling eyes

warmth in your contented presence

contagious reach of your carefree spirit

but the words spilled out

you did not hear my love

only the critiques

i should have stayed silent

should have taken a breath

oh sweet girl

i messed up

and i am so sorry

again

you are precious

you are loved

you are perfectly you

you are enough

you are

Plucking Prickles

My sweet P-nut recently turned ten and has struggled for a while with finding his lost spark.. My silly and inquisitive discoverer has been filled with discouragement and doubt.. He brought me some wisdom well beyond his ten years a few mornings ago. Wisdom that has stayed with me.. and I am so very thankful he shared his insight with me.

A little back story first:
I stumbled across this quote online several moths ago. At a time with my boy was spending most of his days grumpy and easily thrown into tantrums, it was the perfect tool to help him let go of the anger and frustrations. I tucked this little nugget away.. and it wasn't long before I first made the suggestion to a very unhappy boy.
That first time I told him to stop sitting on the cactus he cracked up. The anger was gone. I can't remember the crisis of that moment, but I will always remember the look on his face as he registered what I'd said and then the giggle that spilled from him. It has lost some of that "instant fix" effect as time has passed.. and during a particularly deep moment of despair, we talked a little more about that darned cactus. I spoke with him about how his anger is a little like him holding a cactus in his hand and squeezing it tighter instead of letting go of it.. Of course that's not something most people would do.. squeeze a cactus.. It makes much more sense to let go.

Back to that insightful morning:
P-nut was getting very angry with Holy-In-A-Mood big brother. I bit my tongue hoping they'd work it out, but when it was clear that the frustration was only escalating, I called P over and suggested that he just keep some distance between them. The anger continued to bubble out of my boy.. and again, I told him to get off the cactus. When he hid around the door frame, I backed out of the room, booty stuck out, with my hand pulling a 'cactus' off.. that made him chuckle despite his grump. He left to finish getting ready for school but came back after just a few minutes. He then told me something that I will never forget.

"Mom, you know how you said it's like I squeeze the cactus in my hand.. Well.. sometimes when I let go, the prickles are still stuck in my hand."
<cue light-bulb>
I told him that the same thing happens to me.. and that is when we have to take a breath and pull those prickles out also. I thanked him for sharing that with me.. told him it was a very wise thought.. and I got a big bear-hug and an "I love you."

We're going to find his spark again.. a little more each day.. my silly and inquisitive discoverer is shining through more and more.

It shouldn't surprise me anymore that there is a reason for all things.. but it still does. I realized right away that I am guilty of letting 'prickles' continue to bother me after I've let go of my own cactus. I never realized just how many prickles I've got stuck in my hands though. When things don't work out like I think they should, when my vision of "perfect" isn't happening, I start squeezing that cactus.. and I haven't ever really taken the time to pull out those darned prickles that have been left behind. Each time "perfect" doesn't happen, I get irritated from the OLD prickles along with the NEW ones!!

Time to pull some prickles..

My boy.. on Mute..

I was looking through my journal last night and came across an entry from not too long ago that has been on my mind quite a bit these past three months.

                                       

11-19-14

Tonight, after almost 3 Years med free.. E will start meds again. I am so heart-sick for him.. sad and scared.. and more worried and unsure of what to do than ever before. His tics are out of control most days at school - before and after lunch anyway, Very frequent and Very loud.

This morning I asked my child, who can not help it, to try not to tic at school. It was completely unfair of me to even ask.. but I did.

This evening, while trying to help him study for a test, I broke down. I broke down in front of him.. I Broke. in front of my child. I told him I was sorry for the struggles he was facing and that I would take it on myself if I was able.. through tears.. I Broke.

And I'm struggling to hold it together.. I've been struggling for the last several days. I feel defeated by going back to meds. I feel like the tics won.. like the pressure won. I feel like I gave in to what I thought everyone else was thinking we should do..

SO. Here I sit. A ball of anxiety and uncertainty and worry.. and guilt.. because I broke in front of him. He's got enough to deal with besides my mental state. I've got so many options and ideas bouncing around in my head.. Do this.. No, That.. Try this?. What if it makes things worse?.. I don't know how to help him best.  I don't know what is the Right thing to do. I don't know.

And I Want to know.

I'm worrying too much probably.. I need to let go and breathe.. Let God handle it.. but It's So Hard. I want to take this burden from him. I want to lessen his load. I just need to figure out how.

                                        

This afternoon, after three weeks on a slightly lower dose, I called the neurology center to make a plan for stopping this med.. maybe trying something else.. maybe not.. but we are finished with this one.
I miss my boy. I miss the parts of him that disappear when he's got this prescription in his system. I desperately miss his infectious smile and his contagious laugh.. I miss the shine in his eyes when he's thinking some funny, goofy thought or remembering something entertaining from his day. I miss his jokes and general goofiness.. I miss his more carefree and helpful nature that was beginning to shine before November rolled around..
The parts of him that I have lost this past three months is not worth the reduction in tics this prescription has brought. I would So much rather have a very noisy, very tic-y happy goofball than this muted version of my boy.
For those on the outside of our tic-y life.. I imagine that the "problem" is pretty easily solved with medication.. after all, that's what prescriptions are for, right?. to "fix" what is wrong with people. For those who are on the outside looking in, it's probably a pretty easy decision.. But, it's Not.
My son has Tourette Syndrome. My son isn't broken. My son isn't unruly or ill-behaved. My son isn't trying to get attention drawn to him, and he isn't trying to distract anyone.  My son doesn't need "fixing" so that other people can be more comfortable around him.  What my son needs is for others to understand.. to Truly understand.