Monday, October 31, 2011

Mommy's Miracles: Happiness is a choice.

Mommy's Miracles: Happiness is a choice.: I'm silenced when I hear about the real problems that my friends face. I see pictures of children in wheelchairs, breathing tubes, severe...

Happiness is a choice.

I'm silenced when I hear about the real problems that my friends face. 

I see pictures of children in wheelchairs, breathing tubes, severe hypotonia.  My heart clenches and I want to make things better.  I want to reach out and just hug the parents that are in the pictures too.  Sometimes smiling, sometimes caught in the moment of adjusting a child so that they look more comfortable, sometimes frowning and looking exhausted.  My words of support fall far short.

"Whatever you need.  I'm praying for you."  Ever since my children have been born, I've become a watering pot.  I will cry instantly when I perceive some one's pain.  I saw a co-worker cry and tearfully said,  "Why are we crying?  What can I do?"  She started laughing at the instantaneous tears streaming down my face.

I try to be so tough because we're dealing with a lot.  There are times that it feels overwhelming to me.  It's not that my children are low functioning, it's just the amount of children affected. 

"Sit still.  No rocking.  Stop playing with your hair.  No screaming!  No hitting, no biting!  Sit still.  No rocking.  Stop playing with your hair.  No Screaming!  Stop Screaming! Stop screaming!  Why are you screaming?  Why are you crying?  Stop rocking.  Stop rocking.  Look at me.  Look at me.  STOP SCREAMING!!!!"

My life is filled with repetition. But it's filled with love too. 

"Mommy, take a picture.  I'm SMILING!" 

"Mommy, I dancing.  Oh, I'm a good dancer!  Ha ha!"

"Mommy, uh, adaada, uh, dancing."  "Say it again, I'm listening."  "Mommy, you like dancing?"

"Mama! Dancing! Get down! Oh oh!"

The kids danced for an hour straight tonight.  Laughing and giggling, falling over themselves, belly laughing and squealing with delight.  We took pictures and recorded the moments, to be looked at randomly in the future.

I was able to relax and just laugh at their antics.  I tried so hard to memorize what was happening and I'm writing it down now so that the feeling never slips away.  It's so easy to remember the negative things, the memories are burned into my mind but these memories are the ones that I want to imprint into my mind. 

Happiness is a choice.

Saturday, October 1, 2011

Mommy's Miracles: Sometimes that's enough.

Mommy's Miracles: Sometimes that's enough.: "I have asthma, Mommy, so I cough sometimes." There are some illnesses that make a parent sad but don't shatter a home; like asthma. I th...

Sometimes that's enough.

"I have asthma, Mommy, so I cough sometimes."

There are some illnesses that make a parent sad but don't shatter a home; like asthma.  I think asthma can be frightening when you watch a person struggle to breathe.  I think it can be frightening to struggle to breathe.  I know it is because I'm a severe asthmatic.

I don't remember my mother crying randomly because of my asthma.  I don't remember my mother worrying that I would make friends.  Asthma is common.  It's accepted.  It's not autism. I hope autism will be more accepted as the diagnosis becomes more of a fact rather than the exception.


"Handsome, what's the matter? Use your words."

"Argh!"  He yanks his hand free from me and I clamp on to his hand with my death grip. 

"We never let go, NEVER!  Hold hands!"

He's stuck.  A kindly man gave him a balloon from his store.  He wasn't expecting this.  What if it flies away?  He hates the feel of the ribbon on his skin.  We're at an impasse. 

"We need to keep walking if you want to go to the park.  Come on, Handsome.  You want to have fun, right?"


"Good!  Let's go!"

We struggled continuously with the ribbon and the balloon until we reached the park.  I was already tired and in pain.  My hand never loosened its grip.  I have severe carpal tunnel syndrome, a gift from my pregnancy with the girls.  Maintaining that angle is excruciating but it's necessary.

I let go the instant we were safely in the playground.  He ran from spot to spot, so excited to do everything but afraid to try anything.  It was a nice moment to take a deep breathe...And then he began to tantrum.

He was laying on the floor screaming on the top of his lungs, thrashing his little body, so angry and frustrated. 

"Tell me what you want to do."

"Argh!  Argh! Argh!"

"Use your words. I don't understand you.  I want to help you."

He begins to punch and kick me, grunting the whole time.  I know EXACTLY what he wants.  He wants to climb a part of the jungle gym that is more appropriate for an older kid.  He doesn't understand that his little legs won't reach the next level.  But even if they did, no way would I let him do that if he didn't verbalize his intent. 

"I'm sorry.  I'm confused.  I don't know what you mean.  What is ARGH?"

He points and says play.

"Play?  That sounds wonderful.  Let's do that,  what do you want to do?  I want to..."


"Say it again."

"I want to play!"

"Perfect!  Let's go!"

He begins to climb a mountainous contraption, so large that I easily walk underneath it and place my hands up between the bars that he attempts to grip with his feet and when he misses, my hand bear his weight so that he does not fall through the bars.  My heart is pounding but he makes it up to the top and smiles to himself.  He made it.

The afternoon is filled with running and jumping, laughing and playing, ice cream and sprinklers.  I see my husband beginning to unwind and I feel certain that the other shoe will drop.  I can feel it in my bones.

"I want slide."  Handsome runs up to the top of the steps, takes one look down the slide and throws his body backwards.  My heart skips a beat.  I can't reach him from there.  Oh my God, there are kids coming up the stairs. Please God, no!  Don't let anyone get hurt.  Please!

I did the only thing I could do, I shriek,  "Handsome!  Oh God!  Help me!  Watch out!  Move!"

I'm flying up the mountain that he painstakingly climbed; pushing children out of my way as I watch my son tumble down the steps and take out four kids in the process.  He's never done this before; I hear the screams of pain and I'm stepping over each kid to get to my boy laying on top of a bigger boy.  I reach down and see his laughing face.  He not aware of the danger he was in.  He's not aware of the injured kids.  It's time to go home.

My hands are shaking as we grab a cab. 

"Mommy, I don't want to go home."  The CEO begins to scream.  I hear the frantic note in her voice and I know that it's not a regular moment in time when a child wants to continue playing.  It's a child that NEEDS to continue playing because we didn't count her down.  We broke routine.  Fuck.  Not another one, not now.  Handsome is rubbing his body against me seeking input.  He's pulling at my arms to hug him and I'm looking into the CEO's eyes as they go blank and my heart squeezes.  I've lost her.

She screams all the way home, rocking and slamming her body against me and Handsome.  Pulling her hair and mine.  I'm sweating as we herd them up the stairs.  She's throwing herself to the ground.  I can't do this right now, Handsome is trying to climb my body so that he can get input.  I pick him up and squeeze.  I feel him relax.  He knows where he is now in space.  I grab the other girls as I leave my husband to deal with the CEO's meltdown.

My husband leaves for work an hour later at 6:00pm.  She's still screaming. 

It's 2:30 in the morning and I hear Handsome scream because of his night terrors.  I jump out of bed to reach him before he can wake up the others.  I slowly calm him down using deep pressure techniques.

The clock reads 3:49 and I finally feel myself falling asleep.

The radio blares at 6 am.  It's time to get the kids ready for school.  I stumble around and all is running well.

"Bugabuga, can you get the wipes?" My husband innocently asks.

She waddles into the next room and just stands there. 

"Bugabuga!  Bugabuga!"  No response.  "CEO go help your sister."

She walks into the room and grabs the wipes out of her hands.  Bugabuga begins to cry.  We have to start over.  We cannot move on until she repeats the routine and completes it. 

We're running late.  Bugabuga is not speaking, but rather making mewing noises. 

"Let's go!  I have to go to work.  Come on guys!  Let's get your socks and shoes on.  Get your shoes."

I reach over to grab Bugabuga's shoes and pass them to her.  She couldn't reach them.  All hell breaks loose.  She throws the shoes at my face and throws herself on the floor.  "No, I do it!"

She's in a full tantrum.  The bus should be here any minute. 

"I need to get your shoes on.  Let's go!"

"No! No! No!"


I struggle to get her socks and shoes on.  She tears them off as soon as I let go of her feet.  I step away and let my husband jump in.  We have an agreement.  We will never let them do something that will impede their ability to function as an adult.  In this instance, I feel that we should not let her start her routine over.  She'll miss the bus and she will not always be able to restart.  She needs to learn that sometimes she just needs to keep going.  Life is not perfect.  I watch my husband redirecting her.  She's fighting us. 

"I'm going to let her do it."

"No, we have to be consistent."

"She has to get the bus." We rarely disagree and I throw up my hands.  I know where he's coming from but I know the end result.   She'll get her way and I'll be the asshole while he's the hero.

After less than two hours of sleep, I'm not happy.

I head back into the shower because I've sweat so much that I need to change my clothes.

I feel so alone.  Broken and beaten.  Maybe I'm doing this wrong.  Maybe I need to let them run right over me.  Why the hell am I always choosing the fight rather than the easy road?  I want the fucking easy route!

The bus is late.  I'm dressed and ready to go.  I kiss and hug everyone good bye.  I struggle to keep my emotions in check.  I hold my husband a bit tighter.  He's my strength when I'm weak.  It's been a rough 24 hours.  Time to put on my happy face.

The train ride does nothing to calm me down.  I'm so upset.  I want to cry but I can never let go of my control.  I sit down at my desk.  Put my headphones on at the loudest volume, stare down at the numbers and close out the world for a few hours.  I pour my heart into the numbers.

Sometimes that's enough.