Sebastian!!!

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OK, I'm not going to complain in this update!

Check out this photo Sebastian's mom posted a couple of days ago.....

The picture on the bottom right is from his first day of Kindergarten.  The day I was lucky enough to become his teacher!  The picture on the top is from his last day in Kindergarten and the picture on the left was taken on the day of his fifth grade graduation.

He's as cute and amazing as ever!  This year he wrote a play and the Disney Dreamers program hired actors and produced it.  He wrote a play!  Disney made sure people got to see it performed!  My heart is full!

Introducing Emmi.....

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Several years ago, after one of Sebastian's surgeries I went to visit him at the hospital and met Emmi and her mom.  They had come by to visit Sebastian too.  The first thing I noticed about Emmi was her smile, friendly manner and outgoing personality.  Even if Emmi had been too shy to talk to me it wouldn't have mattered.  I knew that Sebastian loved her and that alone was enough for me.

The second thing I noticed about Emmi was that she also had Arthrogryposis.  The same condition that Sebastian has.

If I remember the story correctly, Sebastian's mom and Pavielle, Emmi's mom, met through an online support group for parents of children with Arthrogryposis.  After speaking to each other online for awhile and realizing that they lived in the same area the two moms decided to meet at a local park and let the kids have a play date.  When Sebastian first saw Emmi he whispered to his mom, "Her arms look like mine."

For the first time, Sebastian had a friend that "looked" like him and his mother had a friend that understood the things that only another mother of a child with arthrogryposis could understand.  Instant bonds were made, more play dates were held and Sebastian often told me "Emmi stories".

                                              (Yes, that is a young Sebastian with Emmi!)

I left Sebastian's hospital room a few minutes before Emmi and her mom did that day.  But, I made a stop in the gift store and ended up exiting the hospital after they did.  Once Emmi realized that I was behind them, she smiled and told me bye one more time as she looked over her mother's shoulder.  You see, her mom was carrying her because Emmi wasn't able to walk at all then.  She still only walks with the help of special braces.

Emmi and her mom live in Colorado now, but they remain an important part of Sebastian's life and that makes them important to me.  I'm hoping it will also make them important to you.

There is a GofundMe page to raise money for a service dog that will help Emmi with her mobility.  They need over $9,000 and as I'm typing this they have raised less than $300 toward that amount.  I'm hoping that together we can help them reach her goal.  It would mean the world to them and could be a life changing event for Emmi.

I know that times are hard and not everyone can donate, but please donate if you can ~ any amount could make that difference between reaching the goal and not reaching the goal. 

It would also help if you could share the link to Emmi's GoFundMe page with others through your own blogs, Facebook, twitter, Instagram, message boards.....anywhere you can think to share!

Maybe, you even know of a church group or organization that would be willing to help.  Please share with them too!

If you donate and/or share the link, please leave a comment here.  I'll get together some prizes to raffle off to anyone that helps in any way.

Just think of the difference we could make if everyone who reads this donates one dollar and shares the post with someone else that donates one dollar and then they share.....and on and on.....

I know that you guys won't let me...or Emmi down!

Emmi's GoFundMe page!

Post Hallowen cuteness!

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I know Halloween is over, but I just had to share this.  Sebastian as Link and all already to save Princess Zelda.....

Sebastian!

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It's hard to believe that it's been almost three years since I first introduced you guys to Sebastian.  I mean, seriously, the kid is a third grader now!

Here's part of what I said in that first post about Sebastian...

My heart breaks because I know that eventually Sebastian will notice the finger pointing. He will learn, at an early age, that people can be cruel. Whether it is a desperate need to feel better about themselves or for reasons that not even they understand, people will be cruel and Sebastian will be seen as an easy victim.

Well, guys, that day has come.  Sadly, Sebastian has met his first bully.

Last night I checked in on Facebook before going to bed and found this post from Sebastian's mom...

Today was the day that I've been dreading and preparing myself for, but you can never really prepare for your child getting bullied.  There was a little boy in school who made fun of Sebastian for being the slowest runner in third grade.  Sebas has been telling me how he wishes he could run faster and I always tell him that God made him in his perfect image.  Sebas said that he walked away and got really sad and went to sit away from everyone else and he felt like crying and the bully followed him to continue to tease and tell how stupid he was.  Another little girl came up and stood up for Sebastian and told one of the staff.  Thinking of him feeling so hurt and alone really tears me up.  I tried to hold back the tears as he told me.  I tried so hard to just listen and be strong for him.  There were a few moments when I caught myself choking up and I had to look away so he wouldn't see me.  I told Sebas that there are always gonna be mean people.  They are hurting and when they see people that are happy they get jealous and they hurt you to make themselves feel better.  I told him that we can't be perfect or the best at everything we try to do and that he might be the slowest runner in third grade but he has the best heart in the whole school and that I rather have a kid that runs slow, with a beautiful heart than a kid that runs fast with an ugly heart.  We prayed for the bully, that God may heal his heart and make him a better person.  It hurts to see your kids have someone try and convince them that they aren't good enough.  I'm so proud of the little girl that stood up for him.  We need more kids like her.

Seriously, how awesome is Sebastian's mom?  She said and did all the right things!

She is so much better than I am, because after I read this I wanted to hop on a plane to Los Angeles and bully that bully! 

I mean, how could he do that to Sebastian?  My favorite person in the whole world is Sebastian.  Why would anyone hurt him?

Then I started thinking about the positive in the story.....the little girl in who came to his side.  How awesome is she?!?  Thank goodness she was there.  She's now my second favorite person in the world!

I am having a hard time dealing with the fact that there's nothing I can do to make things better for Sebastian.  I don't care how old he gets, in my mind, Sebastian will always be the kid who walked with me to close the playground gate so that he could protect me from monsters and bad guys.  I mean, I know that the best thing for him is to bundle him up in love and send him out into the world, but what I really want to do is go back and freeze time so that he never has to cross paths with this kid.

I want to protect his heart and his confidence and his pride.  I want to shelter his mom from the pain and helplessness she feels.

I want to do these things, but I can't.  We all live in the real world where bad things happen and bad things get said and we have to hope the people we love don't let the bad things get to them.  We have to hope that we have bundled them in enough love to protect them from the bad.  We have to hope that they believe that they are as wonderful as we know they are.  We have to believe that love will always win over hate.  And when we have a hard time hoping for and believing in these things we have to fake it until time passes and things get better.

I told Sebastian's mom that he still has people all over the world who love him.  I'm going to send my love to him and his mom in the form of cards.  (That's what I do when I don't know what else to do.)  If you would like to send a card too that would be wonderful.  Just send it to me and I promise I'll get it to him.

Sebastian
c/o Ms. Brown's Class
Greynolds Park Elementary School
1536 NE 179 Street
North Miami Beach, FL 33162

His mom's name is Priscilla, if you would like to send one for her.  I think she could use a little cheering up now too.



 

Fin-tastic by The Kit Cart

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Do you get the daily download fron Gotta Pixel?  Seriously, you can get some amazing FREE goodies so if you aren't getting them you really need to check it out!

Jamie of The Kit Cart gave away the cutest kit called Fin-tastic through the daily download and I really hope you didn't miss it!

I used Fintastic to scrap these pictures of my buddy Sebastian and his friend Emmi.  Emmi also has arthrogryposis and she is just as wonderful and amazing as Sebastian.

Sebastian

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OCG had declared that I am the most boring person alive.  I gotta say, that lately, I agree with him.  We head back to school Monday and I have have pretty much slept my spring break away.  It's not my fault that I haven't been feeling well and still have that stupid cough that seems to love me even though I DO NOT love it!

In a moment of weakness (i.e. boredom!) I checked my school email and found the sweetest email from the Guidance Counselor at Sebastian's school.  She wanted me to know that she, as well as everyone else, has fallen in love with him and admire his independence.

I need to email her back, but I haven't yet because every time I think about what to say, I cry.  You see, without knowing a single thing about the school he was going to, I knew that they would educate and protect him.  My biggest hope was that they would appreciate and love him also. 

They do and it makes me so happy that I cry!

I am happy for him because he doesn't have to worry about being left alone or picked on.  I am happy for the new school and the teachers there because they will now get to learn the same life lessons that I was able to learn from Sebastian.

I am also jealous of those teachers because they will get to watch him grow and expand his horizons  even more than I have.

I am grateful that I was able to meet him and that I still have contact with him and his mother.

 I am etremely grateful and just a little bit jealous that he now has Mrs. Tonietti in his life.

Now, I have to dry my eyes and get some sleep because we're going to photograph the sunrise in not too many hours.  lol!