Our California Vacation Part 1: Disney and California Adventure

We have been on vacation in California, and we've been having a blast!!  I have so many photos to share, I figured I better post them in segments :).  We've had a nice, relaxing time, which we really needed.  Unfortunately, I was sick and had a tooth ache part of the time and things went a bit crazy with David's work while we were here.  David's been pretty stressed, but we are slowly working through it.  Despite it all, I know that we are still so beyond blessed, and that everything will work out just fine.  For that, I am so very thankful!  We are still having a fun time and are loving the memories we are making!

The kiddos loved Disneyland and California Adventure.  This was Ramya's first trip, and she was in Heaven!  She enjoyed many of the rides and also enjoyed chatting with people and showing off her wheelchair.  She also really loved seeing Minney Mouse and the other characters.  She's still talking about that part!  Madi doesn't remember our last trip to Disneyland, but she sure had a lot of fun this trip!  She went on more rides this time and especially loved the teacups and Dumbo.  Conner was big enough for all of the rides this year and was super excited about it.  His favorite ride was California Screaming, and he must have gone 10 times!  I even caught David smiling quite a bit, which was so nice.  I love his smile and I haven't seen enough of it lately.

Without further-ado, here are some photos from our trip!

 

(It's hard to see Ramya, but she's sitting in the seat between me and my dad with her head on my lap. Although she was hiding, she said she loved it!  You can really only see her elbow here.) 

 

This picture has a fun story.  We were walking and Madi saw Pluto.  She was SO excited.  Pluto, however, was rushing to get to the photo site for pictures with Goofy.  I told Madi Pluto wasn't allowed to stop, which she accepted, but was bummed about.  Pluto then grabbed Madi's wheelchair and took off with her!  After chasing them for a few minutes, he stopped here, with Goofy.  They let us snap a few pictures, and Madi couldn't stop talking about how Pluto had pushed her in her wheelchair.  We kept teasing her that she got kidnapped by Pluto.  It really made her day!

 

I put this cone hat on Ramya and it fell all the way down on her tiny head :).  She thought that was VERY funny!

 

I love how Conner loves wearing his 3E shirt.  He picked it first to bring to Disney, and wanted to wear it right away.  He sure is proud of his sisters!

 

In our family, there is always dancing ;)

 



 

 

 And on that note, I just saw a petition that Disney is planning to take away the guest assistance pass.  This is so sad, as there are many, many families that cannot enjoy Disney without them.  Please consider heading over and signing a petition to keep the passes going.  http://petitions.moveon.org/sign/disneyland-discontinues.fb31?source=s.fb&r_by=8807797

The 12 Days of Christmas for Parents of a Child with a Disability

This is stolen from another mighty mom that lives locally, though I'm not sure where it originated.  It's worth the share, though!

♥ The Twelve Days of Christmas ♥

On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.

 

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability.

Madi's Scar

Tonight I sat rubbing Madi's back as she settled down to sleep.  I was overwhelmed with the feeling of how lucky we are to have her in our lives; of how blessed I am to have her as my child.  When I got to the scar on her back, I could not help but think all that her it represents; the neural tube defect, the nerve damage, the hydrocephalus, the Chiari II malformation, the surgeries, the lack of function, the paralysis.  But at the same time, none of those things define who Madi is.  Madi is smart, funny, determined, loving, kind, curious, analytical, beautiful, a charmer, strong, compassionate, giving, and absolutely amazing.  It makes me sad when people stop and stare.  It makes me sad when they don't look at the person who she is, but instead look at the equipment that she uses.  The equipment is nothing.  Her equipment and her disability do not define her.  My prayer is that Madi will grow up strong and confident, showing the world that you are not your disability.  My prayer is that Madi redefines spina bifida, not only for herself, but for all those that come after her.