Fight

Oh, Sweet Child of Mine, 

Sometimes I wish I could see into your mind.

More than sometimes. 

I wish I could more times than not, really.

I wonder if you are just as frustrated with me when I do not know what you need as I try my hardest to not be.

I want to meet your needs - whatever they are. And, you know ... well, really you probably don't know ... that sometimes I do understand what you think your "need" is but I know what I must do for your greater need. For your greater victory.

Little one, everything we do is to bring you victories. 

When you are kicking and screaming and hitting and banging because you want that train that another kiddo has, I know that you think taking the train from that child and giving it to you is the right thing for your mommy to do. I know that that is how you see the world sometimes (as much as any little giant's mother can know anything). But, Little Giant, sometimes wrapping my arms around you and putting my legs crossed over yours until you don't have any fight left (so that you don't hurt yourself or someone else) breaks my heart. I know that in the bigger picture you need to know how the rest of the world works. I love you. And I will fight for you, even when that means I have to fight with you. Every time we are battling a melt down, it's exactly that - we are battling it. You are not alone in it, no matter how alone you feel.

I'm going to be with you through it - every step of it, every kick of it, every wail of it. I'm going to stick it out and be strong and give all I have until when I ask "Where are Mommy's eyes?" for the forty-eighth time you finally look into them and say, "Right there." 

That's when I know I have you back. That's when I know your world and my world are the same again. That's when I will squeeze you and talk you through and we will move forward. 

I will give every ounce of strength I have to bring you through this, kiddo. Every ounce. When I don't think there is any left, I'm going to hold you tight and pray for Grace because one day you are going to be even stronger and bigger and tougher.

Your little body is already so strong. 

I love you. With my whole self, I love you. I am fighting for you. I am fighting with you.

For my whole life. For however long this takes. You've got me. I'm not giving up. 

I'm not going anywhere.

Even when it feels like I'm not, I will meet your needs - your real needs. I will cheer for you. I will push for you. I will defend you but I will always, always look for the bigger picture and fight for every victory along the way.

I love you, Little Giant.

- Your Mom

Never Again

A few days ago I bit the bullet and signed-up for something that I have been terrified to do.

After much discussion with his main therapists and multiple discussions inside my own head, I signed Eli up for a group class - gymnastics. 

Since Eli was a baby his strength has been unmatched. His knack for balance is almost strange to see (and sometimes can be worrying). He can hold himself for several minutes just with his arm strength. This kid has serious skills and I know that if we put him into an atmosphere where he can focus them his world may be a better place.

It isn't in the cards for us for private lessons and, even if it was, I don't want our son to always do things alone. I want him to be around other kiddos. I don't want to hold him back. I don't want to keep him "away".

My neighbor and I tried a play-date the other day. Her precious little giant is on the spectrum and non-verbal. His challenges aren't the same as Eli's - they truly are greater in my eyes - and we wanted to have them together. Throughout the pool-play she was having to re-focus him and reinforce and engage/disengage just as I was having to do with my littlest little. Our conversation was continually interrupted by one of us having to intervene somewhere - about every ten words or so. At one point when she returned to the conversation she apologized for her son. I touched her arm, looked in her eyes, and said, "You never have to apologize to me for T. Ever."

I saw the tears well up in her eyes when she thanked me and said, "I'm so tired of saying 'I'm sorry'. I don't want to apologize. I shouldn't have to."

I understood every single one of those statements. I understood the emotions behind them - the sheer exhaustion of saying you're sorry again and again and again. When your child randomly starts screaming, or hitting, or throwing his head back. When they don't comply with a direction. When they jump in front of another kiddo in line. When they seem to ignore anyone and everyone.

I know how deeply the apologies hurt. I know how they wear down your soul. 

I just said, "No more apologies," as we both wiped away a tear or two. She repeated the same.

"No more apologies."

I made a promise to myself that I would follow that. That I wouldn't hold my little giant back from the rest of the world because I was so tired of saying, "I'm sorry." That I would go in with a strengthened spirit, with the resolve that he deserves every activity and joy and skill allotted to any other child. That  I had to accept my son if I was going to demand for anyone else to.

So I took a breath, said a prayer, and signed Eli up for group gymnastics.

It was a hard class. The first ten minutes he covered his ears and entered his own world. He wouldn't listen. He wouldn't participate. Any response to my promptings was a scream. I told the two instructors just before class started but none of the other six adults (parents) in that room knew. When Eli finally decided to "participate" it was on his terms and a struggle to get him to wait in line and follow directions and just be in a large gym with too much activity and too many people. I saw the stares that people tried to pretend they weren't giving. I saw a couple shaking heads and I even noticed when other parents pulled their children away from my own. I noticed it all. I saw it all. And for the first time, I didn't apologize. Not once.

I didn't remove my littlest little from the challenge. I didn't give up half way through. We fought through together. We celebrated when he did comply, when he did stand in line, when he did follow an activity. My little giant and I cheered for the triumph of today. I cheered for him when he made it through forty minutes of what could have been hell-on-earth for him. With the stares and the shaking heads and the big hands pulling little hands away from my son, I stayed proud of him. I stayed focused.

Every single time I wanted to walk out of that gym I reminded myself "no apologies". No more apologies.

My child deserves my acceptance and my determination and my best self. He doesn't deserve excuses and apologies and a shameful, head-bowed mom. 

He made it through forty-minutes of over-stimulation and fear and chaos in his world. He made it through it! He didn't give up.

Today was very hard. Next week may be better - it may be worse - but we aren't giving up. Never again will I keep him from something because I am scared of what comes with it. Because I don't think I'm strong enough to handle it. Because I don't know how I will get through it.

Never, ever again.