My kid is bald and awesome.

Yesterday was a big day. My girl joined with over 600 people who are not willing to sit back and let childhood cancer win. She went bald. She is so beautiful and we are so proud of her.

Both of my daughters have now joined in and used their sweet charms to raise over 5,000 to help fun childhood cancer research. Thank you to everyone of you that helped them do this, every single dollar showed my girls how good the world can be. You can peek at Marcelina (and me) HERE

Of course I did my best through the high emotion to capture some of the amazing memories. Thank you to everyone who cheered my girl on, both at the event and through texts and calls xoxo You kept her strong, you kept me strong!

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So many of you have called Ella brave. She is to an extent, but let me show you real bravery. This is Jill, she is Eric Schilly’s mom. She had to say goodbye to her sweet boy far to soon. She came yesterday, and I was so touched and amazed by her bravery. She cheered our girl on, hugged her and thanked her.  Eric must be so very very proud of his mom xo

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My guy….

This little guy of mine makes me happy. He is his own littler person with his own little  thoughts on how life should be.  It is fun to just follow him around and photograph his everyday stuff.  This year I am making a real effort to just capture each of my children naturally. The girls are a bit more tricky and have more rules for me (I always listen when they say not now mom) So today I am sharing a few favorites of Max from the last two weeks.

Just watching a little Frozen for the 9,000,000,000 time

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I had been taking some pictures of his new baby cousin, took her off the bed for some snuggles, turned to find him like this.  He has been so sweet with the new baby but he has also been sure to remind me he is my baby! ham

Explaining a new game to his Abuelo.

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Quiet Play

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His dream cake..Cake

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Reading
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Sword fight with his best friend.

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Starting his day in deep thought.thinker

 

 

His little world is growing. I am savoring it.

 

xoxo

 

World Down Syndrome Day…..from where I sit.

Tomorrow is 3-21-!4

World Down Syndrome Day

The United Nations has officially observed WDSD since 2012.

What this looks like from where I sit……

I was recently asked by a lovely friend to share a favorite moment from my time spent at GiGi’s Playhouse. Hard question. I have a lot of favorites, let me see if I can narrow them down a bit.

The saying goes ‘a picture is worth a thousand words” I will use a lot less word.

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this moment is one of those moments that burned itself into my soul. Meet Addison, lil sister is totally the boss of me. On this day I tagged along to take some behind the scenes pictures as a few of the Playhouse members shared about an upcoming event on Bridge Street Live. Well Addison caught a glimpse of herself in the camera’s monitor and had to jump down to get a closer look. See her face, really look. There is no self doubt, there is no worry that she is not enough. All I saw as she smiled, waved and spun was a little girl who knows how loved she is and who knows she has all the right stuff.  In that moment the passion to advocate for individuals with Down syndrome burned a little deeper. I will use my voice and my images to tell their beautiful story, I will hug, shake hands and high five every blessed soul that cross my path because it is OUR JOB to make sure no one ever feels less. My friends at GiGi’s Playhouse teach me over and over again, how to be strong, how to be brave and how to never give up. I only hope to give back a fraction of what I have been given.

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This is my friend Amy. Amy is one of those people you meet and know, right away,  you are standing with pure goodness.  Amy has a huge passion to see the Playhouse in action. She is ready to help out wherever and whenever it is needed. No matter the job she is always first the to say “I can help” .

She inspires me to give better, to take on any job not matter what it is.She sees the best in people and believes that everybody has something to add.   I want to be more like Amy, she is one of my hero’s.

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Look at that smile. She knows she is awesome. I recently had a talk with this beauty about a trip to Florida. I asked if I could go with her. She said :”nope” and shot me a slick smile.  I asked well why not we could have a lot of fun.  She told me “I am going alone. No mommy, no daddy….Nobody, just me”   Here’s the thing, I could see the fierce independence this young lady is striving for. She may not be ready for a trip alone just yet (what 9 year old is?) BUT I see a very independent future for my little friend here. She is working out those plans and with her families support and cheering I 100% believe Sophia will take on the big beautiful world and make it even more beautiful with her charm, humor and talents.

These are just three examples of the people who have changed the way I view the world. There are so many more stories to share, when the time is right, I will share them.

My dream on World Down Syndrome Day is that when a person hears the words Down syndrome their first reaction will not be a sad “oooh” well meaning, but still filled with pity, instead parents will hear an excited “OH!” because as we spread awareness about what Down syndrome really is people will not feel the need to whisper it or feel sad or scared but feel peace knowing their child, sibling or friend has a very bright future.  Every person on this planet has challenges, we all need family and friends to help us over come them. We are more alike than different.

If you are in the Syracuse area on 3-21 please come visit us at Destiny USA in the Canyon and we throw one giant celebration!

3-21, in simple terms, is the day the world celebrates the 3rd copy of the 21st chromosome (Trisomy 21)

Tomorrow we will celebrate everything that makes our friends so amazing!

For more details please check out GiGi’s Playhouse Syracuse on Facebook

If you are not in the Syracuse area I encourage you to look around your community, I am willing to bet someone is putting on a party. Go, introduce yourself, make some new friends. I promise it will be one of the best things you ever do.

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xoxo