Tuesday, May 10, 2011

Feels Perfect

Tonight before I put Joey to bed he sat on my lap and we cuddled. He snuggled into me.

So why is this so exciting? Well for those of you that have personally meet Joey, you know how stiff his body is. He is Hyper tonic (stiff, muscles always contracted). His abductors pull in, his arms are usually straight out stiff, and his back is always very tense. Tonight as he sat on my lap, legs straddled across my hips, his chest against mine and his head snuggling into my neck, he was not tense. He was looser then I have ever felt him. NONE of his muscles in his whole body seemed contracted at all. He melted into me. We laughed together and of course I kissed his face all over. He felt like he didn't have brain damage. Nothing seemed out of place.

This was the most perfect 15 minutes I have experienced in the last 4 years.

Good Night Joey. Mommy loves you. Sweet Dreams.

Saturday, May 7, 2011

Hi, my name is Joey!

Hi my name is Joey. My birthday is June 28. I will be turning 6 years old. My mom is going to give me a Mickey Mouse birthday party. Mickey Mouse is my favorite. I love watching Mickey Mouse club cartoons all day long. It really makes me happy. When it is not on all I have to do is yell "MOM" and bam, Mickey Mouse is on my ipad. There are many different things I like. I love hearing my friends play. I love music and hearing people sing. I like when people hold my hand and pull me along in my wheelchair. I love when people cheer. I love ice cream and cake and pudding.

When people see me in my wheelchair from afar, or even close up, most think I am completely disabled. Well, I'm not. Then there are those people that know me well and still judge me and think that I would not want to do what a typical 5 yr old boy would do. Don't boys like to play baseball? I am on the Cardinals and love wheeling around the bases and throwing the ball. Don't boys like to jump on a trampoline? I think this is my most favorite thing to do, especially when my brother plays with me. Don't boys like to play at the park? I like swinging on the swing. Don't boys like to pound on things and get dirty and yell and flirt? I love doing all these things too. I just do all these things a little different then most boys. I have best friends at school that are typical. They read to me and play with me and make sure I have what I need to be happy. They don't know that I am different (ok maybe a little different, but not totally different). They give me high fives and fight over who gets to push my wheelchair.

I have a wish. I wish that moms and dads would not teach their kids that I am scary or fragile or not of typical mind. That moms and dads would let there kids come and talk to me when we are out and about. I like when they ask questions about my wheelchair or braces or anything about me. I wish that adults would not assume that I would not want to play or can't play or would not want to talk or can't talk. I wish adults would not judge my life and me as a person. If you have questions, any questions, ask me, my mom is there to help me with the answers.

Just because I am in a wheelchair and can't talk much, doesn't mean that I am not a 5yr old boy that likes the same things all other 5 yr old boys like. THINK ABOUT WHAT I WANT, NOT WHAT YOU THINK I WANT. Ask my mom if you don't know.

HAPPY MOMMY'S DAY to my MOMMY and GRANDMA'S and AUNT'S and all those wonderful Mommys out there.

Sunday, May 1, 2011

"I GO"

Santana and Joey Hanging Out

Joey says it best, "I GO".

Since 4 years ago Joey and I have been traveling all over the place for therapy. We have spent close to 100 hours in the air and 1000 hours and miles in the car. When Joey started Kindergarten this last fall, I decided it was time to take a break. We moved therapy to a clinic around the corner from our house and only traveled to NAPA Center in LA a few times. Well as most of you know me, I can't sit still for too long. So off and running we go again.

Just this last week I took Joey, Jessica and Jack to Arizona for ABM therapy for Joey. We have great friends that opened their house up to us all. Lindsey, James, Jett 9, Santana 6 (near drown like Joey), and Tyree 3 ("What the Heck"). Jack spent time hanging with Jett. This was great therapy for Jack. Jack has never meet another boy with a disabled younger brother like Joey. So without having to say anything, they understood each others lives and bonded great. Jessica split her time between her boyfriends, Cameron (her real boyfriend) and Tyree (the younger man). I hung out with Lindsey during the day and in the afternoon took Joey to his ABM therapy. Unfortunately on Wednesday I got sick. It is Sunday and I am home and still sick. Poor Lindsey, she got sick also. On Friday, sick and all, we took the younger boys to see Sesame Street Live, then went to a Charity event for lunch, then off to therapy. Besides this, we really didn't do much in AZ. The sickness got to us and did us in. However, Jack did not seem to bored and neither did Jessica.

Joey's therapy went great. He responded very well. His body is very loose. It will still take a few weeks to see the full effect of the therapy. I think I might come back to AZ in the summer and do another round of ABM.

Lindsey and her family have a great house that they built after Santana's accident. It gave me a lot of great ideas for modifying our house to fit Joey's needs. Thank you again for sharing your house with us. I really really appreciate it. I will miss you all. It is nice being around another family that lives your life. It makes things normal.