2015 Buddy Walk

 This years' buddy walk was.......the most.special.ever.  All the cousins came to support and walk and show love for the girl with the little something extra.  God delivered with a spectacular weather day.  Really, there are not many words beyond that.  Just so grateful for this day and this family.  Next year, we are going big with a team and fundraising.  A year to prepare should do it.

7 May

 Right now......Spring has finally sprung my friends and the snowy days have drifted to a faded memory.  WE are almost mowing lawns.  Its hard to believe that things can still grow after the winter we had, but they always somehow do. 

 And this boy.... both boys are actually playing lacrosse this year.  Its a tough sport, but really fun to watch. 

 And if you never get to go to one of these events in your lifetime, you are seriously missing out.  Oh the inspiration.  These kids (and adults) really give you the perspective on what's important in life.  And how to overcome, and be proud.  And how to be happy, yes, that's what it's all about isn't it. 

 She came in second.  She said, " I am a really fast runner!" Yep.

 The teachers at this school love them like their own. 

 He skipped school for the day to come.  There are just some things you can't learn in a classroom. 

Just an awesome day.  So proud of this girl :)  When I grow Up, I want to be just like her.

Down syndrome awareness Month Links.

Down Syndrome and Sibling Relationships
10 Things teachers should know
20 things Parents Should hear
Today More than Ever You need Our kids.

29 September

 The weekend lens........Saturday, Of course there was soccer.  Fall around here has been spectacular, warm and sunny, not a drop of rain in sight.  Leaves are changing.  Fall is my favorite.

 Sunday.....we threw together a last minute team for the Buddy walk.  Cousins and Uncle, brothers  and a couple of friends from girl scouts all came to celebrate and support the acceptance and inclusion for those with the extra chromosome.  The day was amazing and the pictures can't half describe what the warm sun and breeze felt like, and what the sunlight reflecting off the ocean looked like.  We left with a warm and fuzzy feeling and with so much gratitude with all those who have come into our lives who are either living or supporting someone on this journey.  There are no words.

Our 10th year.

 They put signs up all along the Blvd.. this year, they were awesome.

 Our gang......

 she loved sitting with her friends in the front row of the magic show.

All the kids challenged themselves on the climbing wall.  As we got in the car to leave, L exclaimed, " I LOVE the buddy walk....it was so fun..."  Yes, fun indeed.

We wrapped up the weekend by cooking out and eating outside twice, even as it got dark. Pumpkin Whoopie pies to boot.    Love that.

To the siblings.....

By: Ellen Stumbo

Dear typical sibling of a brother or sister with a disability,

Today I want to speak to you as a parent — perhaps not your parent — but a parent nonetheless.I know you’ve had to sacrifice so much, and I wish you hadn’t. For the many times you’ve thought it wasn’t fair, we’ve felt it too. And if you’ve had to miss out on life experiences, please know that we wish we could offer you the world.

Perhaps at times you’ve felt overlooked, because your sibling’s needs demand all of your parents’ attention. But they see you, they see you in the cracks of their vision, and their hearts hurt for the moments they’ve had to sacrifice time with you. But many nights they think about you, of the wonderful person that you are. I want you to know that the pride and love they feel for you could never be measured, you are what keeps them going many times. You make their days brilliantly beautiful.

And you’ve told us – your sibling with a disability has affected you too. Yes, there’s been sacrifices and some things you’ve had to give up, but you’ve gained so much from your sibling too. You’ve said your siblings with disabilities have shaped you into who you are today. We look at you, and we’re sure there is not a more compassionate, caring, accepting and kind human being walking on this earth.

We’ve seen you be frustrated with your sibling, because after all you are siblings. We’ve seen the frustration in your eyes. But then something happens – perhaps it is a look that as parents we don’t recognize – but we see that frustration be replaced with love. You can be annoyed by hands pulling at you and suddenly be a willing participant in the biggest, sweetest embrace that any siblings could ever share. I see the love in your eyes for your sibling, and I cannot believe that the two of you can share this kind of love. It’s not typical, but it runs so deep, and it reflects a quiet strength in you that brings me to tears.

We’ve seen you stand up to the bullies, even when it was scary. Because you understand so deeply that it isn’t right to diminish anyone, in any way.

And you have extended not only a smile but a friendship to the kids that others so easily overlook. Because you don’t, you don’t ever overlook people. You notice them, you affirm them. With your smile and friendship you remind them that they matter in this world too.

You are perhaps more mature than someone your age. You’ve probably had more responsibilities than most of your peers. I guess in some ways you’ve lived a different life, life impacted by disability. And every day you’re out there, moving in this world with an understanding about the beauty and value of life that makes you stand out, and understanding that few people posses.

You’ve known these truths from a young age, they’ve always been a part of your life. As the parents, we arrived to those truths much later in life.

And you smile at life, enjoying every moment. You are stirring the people around you, helping them to see what you see, to know what you know. You are affecting people’s perceptions of disability as you advocate for your sibling, as you give them a voice when needed. You have willingly embraced this role… it humbles me, it brings me to tears.

You are moving those around you, and you will continue to do so.

As parents, we hope to make this place a better place for our kids. But as the siblings – with hearts so full of acceptance, compassion, an understanding of the value of life – you will go out into this world and change it. Not just for your siblings, but for all of us.

Thank you!

If you ever wonder who we look up to, it’s you. We could not be prouder or love you more fiercely.

This post originally appeared on EllenStumbo.com.

This.

In honor of our IEP meeting today.....This, This THIS!

3-21 World Down Syndrome Awareness day

Today is 3-21, a day recognized for celebrating individuals with three copies of the 21st chromosome.  
We love you and celebrate you little Boo, you make our lives rich and interesting and full and fun.  

The world is rich with so many different kinds of people and millions of stories.  The more of these people you meet, the more differences you encounter, the more stories you hear and truly listen to...the more you discover the meaning of life and find your own place amid this very big world that needs your voice,  your heart and your hands. Happy World Down Syndrome Awareness Day.
  - (Kelle Hampton)

On Friends and Down syndrome

So, Speaking of really being a little down in the dumps about friends.  When B was about 6 months old we joined a playgroup for kids with special needs and their families.  One day another Mom and I were talking about really we just want our girls to have friends, that really is our biggest hope for them.  As B gets older, the struggles that she has in relating to and socializing with her peers are getting bigger.  She is noticing and the girls are noticing.  I know we will go through phases like this, but man, it's hard.  I like to throw myself a little pity party in these times and just cry and think to myself how tired I am of having the only kid who is over the top different., when  the junior high inferiority complex makes a surprise visit, especially when it comes to Moms and Daughters (yes, even I struggle with acceptance).   I found this little video that I love,  B and L  watched it last weekend....
I'm hoping they can use it at school and Girl Scouts......



And I read this.....

and I love these quotes.....

And even when we are a little lost, were learning and moving forward..... (and OMG, MY GIRL SKIIED!!!)

2 October

October is Down Syndrome awareness Month.

If you can find a Buddy Walk near you and bring the whole family.....You won't regret it!  B has such unique gifts to offer the world, I wouldn't want to change a thing.  Her smile, her unconditional love, her hugs, her gentleness, her love for sports and for being with her family and friends. .  I believe there will be the opportunity for her to make her life into whatever she wants it to be. Find a way to celebrate all children and their uniqueness today, that's what it's all about.

22 September

Sunday.......the Buddy Walk.  A game time decision that little boy was healthy enough to go.  A Game time decision that the skies had cleared.  So glad we did.  Our president said it best when she quoted that "it's not about waiting for the skies to clear......it's learning to dance in the rain.....and no one knows about learning to dance in the rain more than this group, wherever we are on our journey..." and "When a doctor looks at you and says, I think she has Down Syndrome, a million things go through your mind, and none of them look like the unbridled joy that is a buddy walk."  Yes....so right.  thank you to our amazing family and friends who show up and support B and  us year after year.  And to this amazing group of parents: It may take a village to raise a child, but it takes an Army to raise a child with special needs.  Thank you for being my army.

19 May

Sunday....

Things are much to my relief back to normal with the tween boy after a good nights sleep....phew.  He even gave up the last Popsicle to his little brother and made me one of those new fancy cord bracelets that all the kids are wearing.  Double phew.  I did a 5.3 mile run this morning and even though it's not super far, I'm feeling it as I try to ramp up my miles again in the nicer weather.  It was cold again today, though.  We had our pellet stove on.  May 19th, Just Sayin....

We had a neighborhood clean up day where we all got together and fixed up the bus stop area that the kids have totally destroyed over the years.  We put down some new loam, mulch, flowers and made a stepping stone path to the infamous climbing tree.

Bre had another REALLY fun swimming birthday party with all her bffs.  I still do get nervous when I go to these things because all these girls and their Mom's hang out so much with each other outside of school at dance, cheer-leading and sports, and well, we're just not there. Watching all these girls together, Sometimes I still do picture in my mind what "could have been" (terrible I know...)  But, the three girls from her class picked her up and carried her around the pool like she was a celebrity, so I really can't complain.  It's such a blessing that she is still invited.  All that work to keep her in the regular class as much as possible......totally worth it.  So another weekend has come and gone in about two milliseconds.....and we're off to another workweek.

10 May

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

3 may

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember.

2 May

Special Olympics Track meet 2013

Yeah, You could be the greatest

You can be the best

You can be the king kong banging on your chest

You could beat the world

You could beat the war

You could talk to God, go banging on his door

You can throw your hands up

You can be the clock

You can move a mountain

You can break rocks

You can be a master

Don't wait for luck

Dedicate yourself and you can find yourself

Standing in the hall of fame

And the world's gonna know your name

Cause you burn with the brightest flame

And the world's gonna know your name

And you'll be on the walls of the hall of fame

You could go the distance

You could run the mile

You could walk straight through hell with a smile

You could be the hero

You could get the gold

Breaking all the records that thought never could be broke

Do it for your people

Do it for your pride

Never gonna know if you never even try

Do it for your country

Do it for name

Cause there's gonna be a day

When your, standing in the hall of fame

And the world's gonna know your name

Cause you burn with the brightest flame

And the world's gonna know your name

And you'll be on the walls of the hall of fame

Be a champion, Be a champion, Be a champion, Be a champion

On the walls of the hall of fame

Be students

Be teachers

Be politicians

Be preachers

Be believers

Be leaders

Be astronauts

Be champions

Be true seekers

Be students

Be teachers

Be politicians

Be preachers

Be believers

Be leaders

Be astronauts

Be champions

Standing in the hall of fame

And the world's gonna know your name

Cause you burn with the brightest flame

And the world's gonna know your name

And you'll be on the walls of the hall of fame

(You can be a champion)

You could be the greatest

(You can be a champion)

You can be the best

(You can be a champion)

You can be the king kong banging on your chest

(You can be a champion)

You could beat the world

(You can be a champion)

You could beat the war

(You can be a champion)

You could talk to God, go banging on his door

(You can be a champion)

You can throw your hands up

(You can be a champion)

You can be the clock

(You can be a champion)

You can move a mountain

(You can be a champion)

You can break rocks

(You can be a champion)

You can be a master

(You can be a champion)

Don't wait for luck

(You can be a champion)

Dedicate yourself and you can find yourself

(You can be a champion)

25 April

thoughts on inclusion (School and otherwise)........

Last night was their First T-ball practice (J is assistant coach).  Lucas came home saying, "Mom, I got my first grass stain!" Love that....  This is the very First sport that we have signed B up for with her typical peers.  We felt vulnerable, but we felt ready.  Of course she is playing with 4-6 year olds, but It's really just right for her (and being with her little brother who she adores).  A Bunch of us DS moms were talking at Dance one day about this feeling vulnerable.  Mostly vulnerable to what other parents might think of our kids (and us!) . And One Mom's advice was really to just reach out to the parents and let them know how you were feeling....ask for support.   Honestly, no one has EVER not welcomed Bre,  really and they are usually more worried about their own kids behavior than watching out for my kids doing an occasional nose pick or shirt lift in right field.  And if they do, we can all laugh together :) The world really is full of amazing and supportive people.  This new Found support I feel from the friends, teachers and community in my life has really changed me.  I am strong and I can do hard stuff.  (B's name actually means "strong") Someone actually essentially  "high-fived" me in a text the other day.....Loved that.
       Next year, at the new school,  we decided on B being in a special Ed classroom for a good part of her Day.  In some ways, It's letting go of the "dream" of total inclusion, in other ways it's putting my own feelings inside to do what would make B the happiest.  To do what would give her the most belonging and to do what we think will help her learn the most.  To give her that special teacher who she will never forget.  I'm totally struggling with that decision (I know, nothing is set in stone), but, really,  It's just so not about me any more.  This Spring, I find vulnerability slowly disappearing, and I'm finding myself at a place of total acceptance and joy for what is, for the first time in a long time, maybe ever.  It's just awesome.....and  she LOVED t-ball too, they both did:)

21 March

3-21  World Down Syndrome Day.  (3 copies of chromosome 21), I figure I should honor it with a really good piece of writing.  I'm sure, though, that nothing can really do justice to the gift that I have been given.  There has been so much I've wanted to write about lately yet mere facts have been the only things gracing this here blog for a little while now.  So much,  like parenting struggles, Never feeling like you are doing it right.  Losing my patience way too much.  Trying to eat healthier then not having time for lunch until 2 in the afternoon.  Wishing for more peace.  Feeling Tired.  Wanting to write down the conversations and the funny things they say, but forgetting a minute later.  Navigating Changes, new jobs, new sports, new schedules, new schools next year.  Trying to figure out what's best and still not knowing.  Being overwhelmed and grateful all at the same time.  Loving and laughing at this post.   Reading this book.  Listening to this song. Grateful that success and opportunity are the same reasons for feeling overwhelmed at times..

The other Day I was on a run with a friend and she asked me what I thought Breanna's future (you know grown up life) would be like....like where should would live, if she would work etc....  I didn't take offense to it one bit, but funny how no one asked me what I thought Trevor would be doing 10 years from now.  Who knows, there are no guarantees people!  She is not suffering.  Her life is full of the normal amount of ups and downs, same as my other kids.  The Truth is that right now, every day we celebrate all he little successes and abilities that continue surprise us.  Her future is bright.  She may have more or even less obstacles than other people to get there.   There is always talk about what makes us different as a family and what values we need to portray because of it.  I think if she never came into our lives, we wouldn't be as good, our family wouldn't.  We would be too wrapped up in ourselves, sweating the small stuff.  Now have the aweome responsiblity to be out there changing the world.  I am so honored to be a Mom to a child who gives me that perspective and that vulnerability even.  SHE makes us look outside of ourselves every day.  SHE is pure joy who loves with every fiber of her being, and to to answer the question, she will live a wonderful, amazing and fulfilling life.    That is what this Day means to me...