Sweatin' for Sammy 2014

Yes, it's that time of year again.  And I get nervous, and scared, and and and....

This year we've added a new category: Remote Runner.  If you can't make it to the event, you can sign up, we send you your shirt and bib #, and you can race when and where you'd like.  You're with us in spirit :)  

And my time is being completely consumed with this event, which is sure to be a great day.  

I haven't written here in a long time, and truthfully, I will probably write a ton more on our family blog: 

The Green Piece.

It seems more natural for me to write there, so for any updates, check out our family blog.  I'll occasionally write here most likely...I can't totally drop her blog.  It doesn't feel right.  But for now my attention is set on other areas.

So much to do, so little time, right?  Sheesh.

Preparing for... "Here We Go"

I can't believe it's time again to go out to Utah for therapy.  Seriously?!  Seriously.  There seems like there's so much to do before we leave, mainly on the car.

Samantha's had a really rough 6 months.  She's been sick a lot and has had seizures pretty regularly.  Between that and growing, her muscles are so tight.  I try to stretch her, but she hates it and doesn't cooperate (fancy that!), and I'm just not as effective as trained therapists.  So, I'm really hoping that she'll be able to get some of her range back when she gets to therapy.

Last year at therapy, I said, "This is probably the last time we'll do this."  And now, preparing to go, I'm saying, "This will probably be the last time I make the trip."  Who knows?  It's hard work to go, be away from Marcus for a month, live in someone else's place, and this year I have 3 kidlets coming with me.  But, when I see the progress she makes, it's hard for me to stop.

Soon I'll be writing about therapy again, posting pictures, and probably crying because it's kind of an emotional trip.  But, I'm banking on the fact that it'll all be worth it.

Now, to get ready and survive this heat in the process!

Seven

Today Samantha is 7 years old.  I can't believe it.  I really don't understand how 7 years went by so quickly. I have so many thoughts in my head, thoughts I want to get down, for right now...

Happy Birthday Sweetheart.

I'm going to go finish up your cake with whipped cream frosting...because that's your favorite (and we know because you get all jumpy and squeal in delight)...and we'll celebrate with everyone.  We love you so much.  You bring so much joy and light.  I'm privileged to be your mommy.

Redefining Beauty

If you have a child with a disability, do you remember the day son or daughter was diagnosed?  Do you remember sitting with the geneticist?  I do.  I remember it clearly.  Both times (because we have done this 2x), we sat with the geneticist and they really weren't able to give us too much information.  The first time, Samantha was still an infant.  And so, we went home, and I went to Google.  I didn't want to.  I think I held off for a good 15 minutes before succumbing to that evil search engine!  And the images that came up broke my heart.

I now know that pictures don't define my daughter...but they do certainly impress a lasting impression on one's mind.  And in the very beginning, when you are moving forward inch by inch, hanging on words and phrases that doctors give you...those pictures can make you feel like any and all future for your child is doomed.

That's why I loved this story.  I love what this fashion photographer is trying to do ~ to redefine beauty, to open our eyes, to help us see hope, love, and beauty in our children.

How would I have felt if instead of pictures like the ones I saw, when I typed in microcephaly these images popped up?  I could have still seen tight arms, smaller body frame, facial features...but they are also just really cute pictures, aren't they?

Ok, I could have found a cuter picture.  But still.  She's so cute.

Look at the light in those eyes.  Our doctors gave us no hope for light...but it beams from her.

That's one reason why making Samantha's story public is important to me.  Search microcephaly today, and you'll see her face pop up, among the many other pictures.  Parents need real information...the everyday stuff.  They need hope.  They need comfort.  They need reassurance.  And with all the pain, they need to see the smiles and the beauty.  I love this man for the work he is doing.  His influence will help many families, and hopefully even change the medical books.

Passionate About a Park

Yesterday I was invited to give a 3 minute presentation at the Rotary Club of San Jose.  I was honored.  San Jose's Rotary Club is among the largest in the nation.  You can imagine how many people want to connect with the Rotary Club and present ideas, and so, there are very strict rules and they don't let people in very often.  However, because Sweatin' for Sammy is raising funds for the Rotary Playgarden, I was invited to attend and speak.

I really did feel honored.  The large conference room was packed.  And my time went quickly.  I was there to introduce to the Rotary Club at large what Sweatin' for Sammy is, but more importantly, to share why I feel so passionately about the Rotary Playgarden.  I knew that most of the Rotary Club was enthusiastic about their park project, but I was also aware that there were a few who weren't convinced this park was for the betterment of the entire city and they were swaying others.  This was an opportunity for me to share how important I felt this park was for everyone, and to speak from my heart.  That, I did.  I was surprised that my emotions got the better of me not once, oh no, but TWICE.  It was fine.  I just choked up a bit.  But that was completely unexpected, but it all worked out.  This is basically what I said:

*~*~*~*~*

(I thanked them for allowing me to be there with them...and then........)

Sweatin' for Sammy started as an event to benefit my daughter.  Samantha was born with a very rare genetic condition and so, as you imagine, we live the special needs life ... doctors, specialists, therapies, seizures.  But it's also a life filled with joy, love, and miracles.

I'd like to share with you why I feel so passionately about the Rotary Playgarden.  Let me share a little of my background to explain.  Before Samantha was born, I was a high school teacher.  In my education classes in college, I remember being taught that if we use methods in our classroom that support our struggling students, then all students would benefit.  And so, when I got my own classroom, I tried to use a variety of teaching methods.  By the end of the year, what I discovered was that those struggling students improved academically, but they also gained confidence.  My high-achieving students not only continued to receive good grades, but because of the methods used, they were also given leadership opportunities and gained important social skills.  Lives were changed in a classroom.

I compare that with the park you are building.  The Rotary Playgarden will be built in such a way that ALL children, ALL families in San Jose and surrounding cities will benefit.  Without this park, the same children and families will continue to fall through the cracks.  So, we build sensory stations, we have sand, water, and music play.  We have more high back swings and ground made out of different material...and more.  The kids who can't play at our parks within the city now can explore and interact with the world around them.  While your average neurotypical child...he just loves going to the new cool playgarden -- a place where while they're having fun they gain greater awareness and compassion.  I have found that people who have little interaction with special needs are uncomfortable around those individuals who are different than themselves.  But the more interaction they have with then, the more comfortable and connected they feel with those members of our community.  I feel this is more than helping a few families, but this is about knitting our entire community together.  Lives will be changed in this playgarden.  It's these inclusive play experiences that create leaders...this is the rising generation, interacting together, in an inclusive environment.  

This is the park I have dreamed of for my family.  A place where we can all run around an play.  This is the park that my paraplegic friend has dreamed of for her family . A place where her wheelchair can roll alongside her boys who laugh and play. 

We are excited about the Rotary Playgarden here in San Jose, and that is why we are proud to be supporting it and helping to raise funds.

And then I explained Sweatin' for Sammy a bit.

*~*~*~*~*

It went well.  I got a lot of great feedback that I was able to take back to our committee.  I love Sweatin' for Sammy and what it's becoming. I love that we have this way to take care of Sammy's needs...but the fact that we are growing and are able to support other projects and help other families...it's really exciting.  I say that all while holding my breath because we still need people to register in order to make money, but I have faith that it'll all come together and April 20, 2013 will be an amazing day.

Anyway, my overall objective was to draw people to our event and raise money.  Every registeration counts.  Every $1 donated counts.  And, on April 21 we'll be adding it all up.  (sigh)  It's nerve wracking, but also really really fun and exciting.

Tender Moments

I've been feeling very tender about Samantha lately.  I'm not sure why, necessarily.  Maybe because she's growing so quickly all of a sudden.  Or because we just ordered a stroller for her -- that costs a few thousand dollars (more on that later).  Or maybe because lately, I've just been in awe at her beautiful smile.  She smiles so big.  And it makes me melt.

Tonight, we watched a movie.  Sammy came over, climbed up on my lap, curled up, and fell asleep.  I didn't want to let her go.  And so, I held her for a long time before I put her to bed.  It was just me with my right arm around Callie, and Sammy sitting on my lap.  I felt as if I were surrounded by angels...not just the 2 sitting with me.

Though I feel like I truly am "ok" with her life -- her disabilities and the struggles that she and we face because of them -- I have recently been thinking a lot of "what if."  I really wonder who she would be if she had been born without a faulty mortal body.  Quite frankly, I think she'd be a pill!  But she'd still be tender and loving and ... probably the same way she is now in many respects.  I've struggled a lot with some of these feelings I've had, and I can easily ignore them because I am working on other projects that distract me.    And then, there are nights like tonight, when the house is quiet, it's just us, and her spirit and mine connect...peacefully.  And I'm reminded of what a blessing she is in my life.  And I forget about the what ifs.  Because she's mine and my life is more full because she's in it.

I was reminded of this song.  I've shared it before.  And I guess I wanted to torture myself and cry like a baby, so I listened to it again.  I love it.

Sweatin' for Sammy Helps Others

For years I have had a dream.  That dream was to build a park in our city that everyone could play at.  I have so much fun at the park with Callie, but quite honestly, it's kind of a headache taking Samantha to the park.  When she was younger, it was ok because she could fit into the baby swings.  And she loves the swings.  But now that she's older, it's difficult for me to get her in and out of those small baby swings.  There are some parks that have high back swings for special needs kids, but let's be honest...every kids loves those swings and they are ALWAYS being used by someone else.  And I'm not about to go and tell some kid to get off the swing.  I just can't do that.

Tanbark is difficult for Sammy to walk on.  There are ledges along the playgrounds that often make it challenging for her to walk up and down.  And really, there's just not much she can do.

Little by little, I came up with what I wanted Sammy and other kids like her to have.  I thought of my nephew, too, who is in a wheelchair.  What would he want to do but can't at a park?  I had plans for him and kids like him.

I talked with my committee for Sweatin' for Sammy and the director of the non-profit we use, DCipher Group Foundation.  I asked them how they would feel using Sweatin' for Sammy as a way to raise some money to create this park.  I had my architect, I had what I wanted, all I needed was money and I was getting ready to approach San Jose with my plans.  I needed them to donate the land.  I was looking at old parks that needed renovation and was going to suggest they NOT spend the money renovating and give it to us...and in 5 years time we'd have a special needs park -- all accessible park -- that would bring people to our beautiful city.

We were all on board.

Then, I was made aware of the fact that the San Jose Rotary Club was beginning this same project!  I was momentarily disappointed thinking that my dreams weren't going to be JUST as I imagined.  But relief hit when I realized we could support them and I'd have a huge load off my shoulders!  Wahoo!  Planning a park is not easy, and if I could just help with fundraising, yeah!


So, this year, I am proud to announce that Sweatin' for Sammy is again raising money for Sammy's therapy....(check out our new logo) and after those costs are met......








we will be making a (hopefully LARGE) donation to the San Jose Rotary Club to help build the San Jose Children's Play Garden.  Look at the link and see their great plans.

I'm excited for the future with our family as we visit this park.

I'm excited that Sweatin' for Sammy is not only helping Samantha, but so many other families in our community.

I'm also really excited to see how much money we can raise.

Come be a part of this year with us.  And if you've joined us in the past...join us again.  It's going to be a great year.