Wednesday, September 26, 2012

Someone stop the roller coaster, PLEASE!

Well, here I sit, trying to fight back the tears and dreading putting my feelings out there, but realizing that in the past it has truly helped. Leave the judgment on FB political posts, please, and don't share them here. Encouragement and prayers are always accepted here, however.

Let's be real... my heart hurts tonight. I am an emotional wreck. I am angry. I am furious. I want to cry. I want to hit things. I want to get in my car and drive to the beach and just lay in the sand and demand answers from God. I want to go on a road trip and drive down the interstate with the radio blasting as loud as it will go as if to drown out some of the thoughts racing through my head. I just want to wake up and live the fairytale life my mom always said I had.... at one point in time. Where did that go, anyway? When did my fairytale, my pumpkin carriage, crash off a wooden bridge into a river that went this deep? WHEN?! WHY?!

Nothing out of the ordinary has happened to bring these feelings on. I just have been doing the typical Becca thing, stuffing so that I can stay on top of things. Facing reality but not facing it the way I thought I was I suppose.

Let's start with Saturday. We went to Jaden's birthday party. It was at Tom Brown Park, so I thought it would be perfect. Outside, weather was gorgeous, surely Roman would enjoy it! He did enjoy the swings....and his bowling pins.... When we got there, he kept to himself, sitting at the table placing his two bowling pins side by side on the table in front of him. Then he would walk off to the water and point and squeal. He was having a blast when Ramsey pushed him in the swings. His behavior was great, but it was so obvious that he is in his own world. I mean, there were kids EVERYWHERE.... and mine just wanted to do his own thing.

On the car ride home, Ramsey said "You know, Rebecca, Roman is just now hitting that stage where everything you say to him he answers with "no", only he doesn't say no, he just shakes his head. Our other kids did that so much earlier than this." I felt like someone punched me in the stomach. First of all, how did HE catch something like this and I had totally missed it? Second of all, wait a minute....who are you and where is the Ramsey that was refusing to believe all of this? Did he finally "get it"?? Turns out, he does get it. He "got it" that day at the party... and I owe it all to one special individual I recently met that was willing to talk so openly about it that day, with Ramsey within ear shots distance. (No name mentioned, as I don't have her permission to do so.) As I said, I kind of stuffed this deep down into my gut and carried on with my day.

Saturday night we went to Susan's to watch the football game. While there, Roman was phenomenal. He behaved and was not full of squeals and screams. However, as Roman does best...he showed us his quirks and we all sat around discussing it. (Giving him a pack of crackers, he dumps them onto the TV stand. He lines them up. He eats one. He finds the Little Einstein's airplane and moves the crackers one by one into the airplane, just to eat them from there.) Sure, it is cute and you can't help but just smile watching him, but as his mother, it's a flood of emotions.

Sometimes I just want to go knock all the lined up toys down and refuse to believe that that is a sign of this stupid thing called autism. I want to start over. I want to breastfeed him longer. I want to snuggle him and rock him more. I want to prevent that salmonella he had at only a few months old. I want to play with him more. I want to buy him every singing toy, light up toy, etc that you can find on Walmart and Target shelves, Toys R Us, and Amazon. I want to erase the memory of MRSA attacking his little body earlier this year. I WANT TO START OVER! I want to refuse the H1N1 shot, the flu shot while pregnant. I want to fight harder and tell the doctor I NEED the Heparin shots even though I hate them and they leave me bruised all over. Here is a brutally honest statement: I want to take back every prayer I prayed begging God to let me have a miscarriage because I didn't think I could handle four kids. I want to take back that night I went out drinking when I assumed I was pregnant, but hey...no test meant I could live in denial a bit longer. I just want to take all the wrongs back and make everything right for my son's sake.

Sunday I went to church like a normal Sunday. When I got home, my next door neighbor came out to meet me in the driveway. She shared with me a story about a young boy she met at church that had gone forward for prayer. She was touched by it and went to speak with the mother afterwards and told her how she just thought it was the sweetest thing. The mother ended up telling her that her son is autistic and the music gives him anxiety, but he doesn't want it to anymore and he was seeking prayer in that area. She gave me a hug, and told me the Lord was in control and she believed he would be someone big one day. This gave me the biggest sense of calmness, and for a few minutes, I truly felt that all would be okay in my world....

Tuesday on the way to school, I was curious and started pulling up youtube videos that were songs on autism. I mean, why not? Maybe someone out there could mirror the feelings I was experiencing. This led to tears, nonstop. The words were gut-wrenching, but at the same time, so real. So real, that I was back to the rut of not wanting this for my son. He doesn't deserve this. I deserve the backlash, I deserve the bad stuff, but not him....what has HE done to deserve any of this?!

I mean, shallow honest moment here, today was picture day at Roman's school and I couldn't even find a new shirt for him to wear because I was worried about if he was going to "look" a certain way. How lame and pathetic can I really get?!

Lyrics to the song:

It's so hard for me to say "I love you"

The words just don't come out the way they should

And I know you don't believe me, when I'm being so bad

That I'm trying so hard to be good

Pre-chorus:

And at those times when you reach for me

And I push you away

Deep inside I just want you to stay, 'cause...

CHORUS:

You're the light in my dark, the current in my stream

My sun when it's raining and drowning all my dreams

Without you, I can't make it ... so don't give up on me

There's a whole lot of love inside the person you can't see.

Verse 2:

I wish I could say how much I need you

I want to show how much I love your smiling face

But something deep inside keeps holding me back

And I'm lost in my own little space


Prechorus to chorus to bridge:

Forgive me if I'm screaming...I'm desperate to show you

Who I really am, I just wanna know you....'cause

Honestly I sat there, in shock...it was as if the words were written FOR ROMAN. He screams, and he, through someone else, was pleading with me not to give up on him. He was telling me he tries to be good despite breaking phone chargers, throwing things at me while I drive, etc. He wants to make me proud. He isn't intentionally making these days and trips to the store overly stressful. That was a huge thing to swallow. This is not his fault. I never thought it was, but my eyes were opened to much more through that song. 

I have been able to find, unexpectedly, a "happy place" for myself. Somewhere for me to go and just feel at peace, smile, and enjoy the environment. I have not turned to alcohol, drugs, or any of the things people typically turn to in an attempt at alleviating their pain so I guess I am doing okay. I just have rough patches. I have weak days. I cry over little things like a new blister popping up on Lilman's knee and the thought of adding a trip to the dermatologist into this busy hectic life of mine. No, the blister wasn't the end of the world. It wasn't the first EB flare we have had and it won't be the last, but it sure did send me into a tearful blubbering mess when it happened. I am just fragile. I am broken. I want to fix everything, and unfortunately there is NOTHING I can do.

What I HAVE DONE, is I decided to pour this negative/depressing energy into setting up a FB event page for Rebekah Runs for Roman. It made me feel like I was raising awareness, helping, in some way. Sure, it may not be huge, but I can't wait for our trip to Orlando so that she can run for the cause...wearing Roman's name... how awesome that I have these people that love me so much in my life. 

I know that I am loved. I know that people all around me are praying for my strength. I know that people wish they could take the hurt away. What I don't know is how long this roller coaster ride of emotions is going to linger around. I have forced myself to eat this week, after losing 10 pounds because food is just not appealing. I have forced myself to wear a smile when people are around and not let my frustration show. I have made sure not to punch any cabinets (haha... SN: My kids decided to tell my parents about that tonight while they were babysitting them...my dad's approach to discussing it with me was priceless.). I literally feel like I am hanging by a thread at moments, and then it all disappears when I find my happy place...and then the thread snaps. It is literally a roller coaster of emotions and I just want to get all of this part behind me. I want to fully accept the challenges that are coming, and stop dwelling on the "what will the future be like" kind of thoughts. Bottom line, I am sick of the roller coaster and I am ready to move to the Lazy River and float my way through the rest of this ordeal. :)
 


4 comments:

  1. I love you so much! You are one of the strongest and smartest people I know. Yo are a wonderful mother, wife and friend. I know this isnt easy. I wish I could take all your pain away. I am so proud of you for how you are handling all this! It says everything about your character! Just remember God is incontrol! He has a plan! He made Roman just how He wanted him. I know its hard to understand but we arent suppose the understand. Just TRUST! I love you!

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  2. I think the benefit that Roman has had for so long over all other children with this is having you as his mother. You and Ramsey, and even your other kids, have all treated Roman like a normal kid. I think the one thing to do in this situation, and I know it's hard to do with the million thoughts going through your head, but keep doing what you were doing! Don't change things for him. Don't treat him like he's different. It's like a person with no physical handicaps whatsoever sitting in a wheelchair. People immediately change their perception and the way they treat that person. Autism is NOT a handicap.... I know it's not obvious now, but somewhere, one day, Roman will show you his gift. That's the blessing in it all. Autism makes the person extremely excel in certain areas. And while it may take time and a shit-ton of effort, it will happen! I love you Becca and Roman is your answer to your prayers. He is part of your life for a reason. :)

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  3. Becca, I know it has been a long time since we have spoken or seen one another, but I want you to know that I am thinking about you and your family. When we were in school together at Flagler, you always found a way to make it work with your kids...your family. You did because you are strong and God is not going to give you anything you cannot handle (even when it feels like he is). I don't have all of the answers or know many people who do when it comes to autism. I do know parents who have children with autism that have made life work and been happy. I know teachers who can help these children be happy, successful

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  4. It cut me off...the end of that was children. If you want me to connect you with other parents or teachers, just let me know. I will do anything I can to help. Prayers and thoughts your way. Love, Katy Kiser

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