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.

Better

Poor Sammy's been having some serious problems with her feet.  I usually don't get into the pity-party mode, but a couple weeks ago I was so frustrated and just thought... "Most kids don't have to deal with this.  Most MOMS don't have to worry about this."  And I was just upset and sad and frustrated and annoyed.  

The story is long, too long, to write.  But a lot of factors played into why Sammy's right foot has gotten so bad.  Some of those factors are bad decisions made by professionals.  Whatever.  Moving on.  Below is a picture of her right foot.  She had worn her night cast -- she wears casts at night to stretch her achilles tendon as she sleeps -- and this is several hours after her cast has been off.  Look at that redness.  This picture was taken last week and it's now beginning to fade after not wearing casts or braces as she should.  

So.  Frustration. Anger. Annoyance. Sadness.  Back to that.

During the Christmas break, I took time to really work on Sammy's legs and feet.  She would be home all day and I just knew I could "fix" it, or improve her foot at least.  I began to massage her feet and legs 2x a day.  Whenever she was standing and playing, I'd come up to her and put downward pressure through her hips and legs.  I used essential oils as I massaged her.  She took many more warm baths than she normally does, so we could loosen her up.  And all those feelings I had had melted away.  They were replaced by love and gratitude.  I was helping her.  And that time we spent together was happy time.  It wasn't always easy, but I knew I was helping her and there was an exchange of mother/daughter love during those times of service.

I love being Samantha's mom.  She adds so much light to my life.  I'm constantly reminded that those harder times are important because they bring added joy to my every day.  And, every day, she makes me a better person.  It never fails that I only recognize this AFTER the problem, but that's ok.  I'm still trying to be better.  And she's helping me.

Sammy at Now I Can

Now I Can sent this video a while ago and I keep forgetting to post it.  It's funny to watch this video after being home for a few months.  It brings me back to those long days...and I just feel so grateful.  Grateful for the therapists and staff who work there.  Grateful for a beautiful daughter who teaches me compassion, patience, and charity.  Grateful for friends, family, and strangers who help us get there.  My heart is full.

Watch the video HERE

Walking

After our last session at Now I Can, I was happy with what was done, but I also felt like Sammy hadn't made as much progress as she had in the past.  Sergio and Nacole were happy with what Sammy was doing, so why wasn't I?  Sergio told me that I'd see a difference when she got home.

Well, I have seen a difference, and I was able to capture some of it on video.

One of Sammy's big problems is that she moves super fast -- she has no control.  And because of that, she hunches over.  She is definitely standing up straighter and taking smaller, slower steps.  This is actually huge progress and we're really happy.  Yes, we need to work on her upper body and being down on her heals, but I'm still pretty thrilled.  Way to go Sammers!

O Brother!

Sammy's a big sister again!  

Welcome home baby Micah!  We love you so much.

Week 1: Over

More pictures on our family blog

We're Back

Well, Sammy is back in therapy here in Utah at Now I Can.  I've been really distracted the past 6 months and I have not done as great doing at-home therapy with Sammy as I had been in the past.  CCS (California Children's Services) is where Sammy gets most of her physical and occupational therapy.  She also gets that and speech through school.  Previously, Sammy had PT 2x a week and OT 1x a week.  They have slowly been dwindling that down and she now gets PT 2x a month and OT 1x a month.  I've questioned the point in it all, and even asked if 1x a month did anything for her.  The response was "No, but it keeps her in the program."  And then I question, do I even want her still in the program?  At what point is enough...enough?  I think it's a question we'll all face at some point....maybe.

Anyway, I've thought a lot about it.  I've prayed about it.  And about a week ago, I feel like I really got my answer.  There is more to do.  I can't tell you how that answer came to me really, but it was an answer and I recognize it as an answer to my prayer.  And, it was motivating.  I really wasn't looking forward to coming to Utah again.  I'm tired, and quite frankly, a little burned out.  But I'm glad we're here.  This is where Sammy needs to be right now, and I feel like I have the Lord's support in finding what therapy Sammy needs.  That's a good feeling.

  

Sisters

I love this picture.  On this particular day, we were spending some time as a family at a park around her.  Vasona Park.  It was a beautiful day.  I think, actually, we were there celebrating Marcus' birthday.  The picture is now a year old, but my feelings are still fresh.

When Callie entered our lives, I knew she had a special connection with Samantha.  I felt that before we even met her.  Over the next few months, I'd notice patterns.  Callie seemed to sense certain things about Samantha that we couldn't.  In the evening, Callie would get super fussy about an hour before Sammy would have a seizure.  I didn't recognize it at first.  It was my mom who pointed it out to me, and then, sure enough, I saw the pattern.  Callie has always been proud of Sammy.  She has gone through phases of being annoyed with her (which I consider healthy), but she is one of Sammy's biggest cheerleaders.  She enjoys helping her in any way she can.  She shares with her.  She hugs her, carries her (yikes!), and kisses her.  I frequently here Callie say, "Aw Sammy.  You have such a cute little head."  In the past, when Sammy would cry more often, Callie would try to calm her by saying, "It's ok Sammy.  It'll be ok.  I'm here.  There you go."  She has always taken a motherly, or rather...a protective role when it comes to Samantha.  Though Sammy adores Callie, she most likely takes for granted how important Callie is to her.  One day she'll know.

Early on, Samantha did not like Callie.  It wasn't anything against Callie, it was the fact that there was a new baby in her mommy's arms (which I also consider healthy).  But over time, she has grown a tight bond with her big little sister.  She adores Callie.  I think it's among the few words she says, in fact.  Callie is her playmate, sister, and friend.  She gets excited to see Callie which is clearly evident as her face lights up and her squeals and laughter are heard.  And Callie loves Sammy so much, partly, because she knows how much Sammy loves her.

Pictures can only show so much.  But occasionally, when it's a really great picture, it really does say so much more than words can.  It doesn't have to be a professional picture, just a picture that touches your heart.  This is one of them for me.  In my eyes, this accurately represents their relationship.  Sammy playfully is looking off, distracted by something ~ while Callie holds her head up higher, eyes wider, looking around, watchful.  Callie sits in front.  A leader.  Sammy, full of trust and submission, gratefully and cheerfully sits behind.  Both of them are happy, though Callie's face shows her self-appointed sense of duty.

I love these girls, and I love this picture.    

Loving Our Sammy

Thank you, again, for all who were involved with Sweatin' for Sammy one way or another.  I can't express my gratitude enough.  I have always thought of Samantha as a blessing.  Yes, there were times, especially early on, when I was sad about the situation.  But I have never been sad about her.  She has brought so much joy to my life.  Her disorder/condition have brought me frustration, sadness, and emotional pain.  However, her little self has brought more joy than I could  e v e r  imagine.  But, you know...the microcephaly and cerebral palsy and epilepsy...they are a part of her.  So, in a way, yes, those things bring me happiness too.  hmm  Weird.

Sweatin' for Sammy is more than just a way for her to have money to cover this therapy in Utah.  Long term, it will cover other therapies that have been recommended for her that we would like to try.  It will cover other medical expenses and/or medical equipment that she will need.

Sweatin' for Sammy started as a fundraiser, but it has become something more special to us.  I love crowds and parties!  And this day that we devote to Sammy has become, to us, a celebration of Samantha.  It's a party to celebrate her life.  The money is important and fantastic.  It goes right to her trust and we can use that to make sure she gets all that we hope to be able to provide for her.  But...she is an amazing little girl.  And it's hard for me to keep dry-eyed at the end of Sweatin' for Sammy when I think about all the people there loving our little girl, whether they know her or not.  I truly feel honored to be her mother.

The other day Marcus and I talked to a friend on the phone.  As she talked about Samantha, I felt overwhelmed with so much love.  I know there are other ways, surely, that I could have learned the lessons that I'm needing to learn in this lifetime...but I am grateful that my Heavenly Father chose to teach me through Samantha.  She is all things good.  And I'm grateful to have her in our home and in our life, forever.

For all who have asked, I posted on our family blog about the grand total.

Again, thank you to all who came because you know her, love her, don't know her but want to, or just because a friend dragged you along.  No matter why you were involved, I love you for it.

Sammy's teacher and friend from school.  Samantha's teacher is nothing short from phenomenal.  We are greatly blessed that Sammy is in her class and that Laura came to Argonaut this past year.  Sammy plays on the playground with this little boy.  He seems to have a special connection and affection for her.  I deeply love his parents for teaching him to see Sammy and other kids like her as his equal.

Sweatin' Preview

Getting Ready to Sweat

I am getting very ready for tomorrow's big day.  Yesterday we went to packet pick-up and got our t-shirts and bib numbers.  I was so excited I could hardly contain myself.  Road Runner was awesome.  Even though we are among the smaller events that do packet pick-up there, the employees were full of energy and so fun.  Callie had a great time playing red light, green light with the employees there as she waited for me.

We have awesome t-shirts this year.  

We have about 500 bananas in the minivan.

We have a ton of bagels that I need to fit into the van.

We have 200 Nutrigrain bars.

We have about 500 energy bars.

And even more food.

600 bottles of water.

More people are still registering.

Sammy will be on the NBC news tonight.

Firefighters are scheduled to come cheer the kids on during their race.

Music is set.

Prizes packed.

And we're doing all those final touches, hoping we don't forget anything.

I am filled with so much gratitude.  Last week, I was worried that people wouldn't come.  But then, I didn't care.  Something happened and I just didn't care anymore...not in a bad way...in a good way.  I realized that whoever was there would be celebrating Samantha with us, and that was enough for me.  I felt calm and really really blessed.  And now, in the 11th hour, I cannot believe what is coming together.  Sponsors deciding to write another check, just because.  What?!  People signing up, just because they want to be a part of it.  Volunteers coming out of the woodwork, just because they want to be there.  I'm touched.  I'm excited.  I'm so so happy.

I remember when I did the Hellyer 1/2 Marathon a couple months ago.  I was so excited.  Well, honestly, I felt some dread at the same time...but that morning I was so excited.  When I sit back and think about the people who will be there, excited to run in this race, and that it is all because of Samantha, it makes my heart overflow with such love and gratitude.

So, here's to tomorrow, and here's to Sweatin' for Sammy!

Little Angel

A family friend, Britney Black, created this video for a school project.  It was nominated to go to the film festival among the middle schools...way to go Britney!  For more details for Sweatin' for Sammy...scroll down.

Sweatin' for Sammy 2012

Be a part of the fun and help us raise money to get Sammy to Now I Can again this coming year! 

What:  Sweatin' for Sammy 2012 -- 10K, 5K, Kids' Fun Run

When:  Saturday, May 19, 2012

Where: Hellyer County Park 985 Hellyer Avenue, San Jose, 95111

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Kids' Run Specifics

Kids' Fun Run starts at 10:30am
Race day registration is at 8am IF we are not sold out -- limited to 100 Kids' Run participants.  If you are interested, please register online to secure a place for your child.  

Kids Run distances:
30 yards -- 2-3 yr olds
100 yards -- 4-5 yr olds
200 yards -- 6-7 yr olds
300 yards -- 8-9 yr olds

~*~*~*~*~

For more information and to register, visit www.sweatinforsammy.com   or http://www.active.com/running/san-jose-ca/sweatin-for-sammy-2012

If you were there last year, no doubt you were sweatin' for Sammy (or...hikin' for Sammy) on the trail at Quicksilver. This year we are on a paved, flat trail!

Thank You to our Sponsors!
Amato Pizzeria (www.amatopizzeria.com 408-997-7727)
JM Williams Accountancy  (www.jmwac.com)
Kevin Calvert DDS/Christopher Walton DDS (http://www.calvertdds.com/)
Saputo Cheese (http://www.saputousafoodservice.com/)
Jim Pojda: Alain Pinel (www.jimpojda.com)
R. Martin Judd DDS  (408-377-3366)
The Learning Map (www.thelearningmap.blogspot.com)
Motif Spa (http://www.motifspa.com/)
Leonard Peterson DDS   (408-873-8484)
Diamond Fence Company  (http://www.diamondfenceco.com/  408-374-4282)
Araujo's Mexican Grill (3070 Senter Rd  408-300-0814)
Elo Photography (www.elophotography.com)

Pictures from

Sweatin' for Sammy

2011

Two Days

I can't believe it's almost time to go home.  Four weeks is a long time to be away, and in some respects, I feel like we've been here forever...in others...like the time has flown by.

Here's some more progress from our little super star:

* Today, for the first time, she walked in a straight line by herself.  Seems so simple.  There's so much we take for granted.  But for her, these are huge things.  Sergio had her and she walked right to Aaron when prompted (about 6 ft. away).  Sergio was thrilled.  Me too!

* Hands and arms are still so much more relaxed.

* Her overall body is more relaxed.  I can't believe it.  I know there's still spunk in her, but she's so much calmer.

* ummmm, I had more things on my list, but I'm tired now and can't think.

I'm proud of her.  They are small accomplishments, but also really BIG!  I'm do have this fear that people won't see the change and think we are wasting our time, but then I remember that that's just lame.  And I get over it.  Just Thursday and Friday left.