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:

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(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.

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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.

O Brother!

Sammy's a big sister again!  

Welcome home baby Micah!  We love you so much.

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.    

Miracle

"The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him."

~ Pablo Caslas 

Samantha, oh how I hope you know what a miracle you are...and there has never been and most definitely will never be another one like you.  I love you.  You have changed my life for the better.

My Biker Girl

Grandpa sure did it this time.  He made Sammy some adaptive bike pedals and bought sheer delight to both her and her mommy.  That's right.  Sammy'll be trying to ride a bike ladies and gentlemen.  Watch out!!!

Trying to push the pedals on her own.

Feeling like a big girl.

Well, we all fall down sometimes, right?

Family

Samantha,

You have a lot of people who love you.  You really do.  Callie adores you.  Today, we went hiking around Castle Rock.  I was walking with Callie, and she asked, "Where is my sister Sammy?"  I told her that you were with Uncle Colin.  Callie replied with a sincere, "Oh.  I love my sister Sammy."  She always qualifies you as her sister.  You're her sister, Sammy.  You, likewise, love Callie.  You really seem to light up around her, and it makes me so happy to see it.  I hope that as you both grow up, you're bond will continue to grow.  I felt so strongly when Callie entered our life, that a big reason for her coming to our home was for you.  I felt so so strongly that she was meant for you almost...that you two make a match of some sort.  I love you both so much.

And then there's your cousin Nathaniel.  Callie called him Famel, and that seems to have stuck.  You and Famel are pretty tight too.  He seems fascinated with you and you're pretty fond of him yourself.  I'm not sure what it is.  I've thought about it a little bit, and maybe it's because he's so fresh still...so new and clean and pure that he is able to more fully see people for what they really are.  Maybe he was told about you before he came down.  Or, maybe he watched you, knowing he'd be your cousin.  Or maybe he just thinks you're super cute.  But you sure make him light up, just like you make us all light up.

I sure love you Sammy.  You're on wonderful little lady and I feel so blessed that you are in our family -- or rather, that we're in yours.

Love you,

Mommy

Cutest Patient Ever

And that's one pretty cute doctor too.

Happy Halloween 2010.

And Chloe...though I don't know you, I'm not feeling any creep-factor.  Read all you want.

This Mare Eats Oats

Maren, a friend of mine from back in our BYU days, is a fantastic person. Our paths crossed for a short time at school, and we reconnected when I moved out to California. She lives not too far away, and it was fun to know someone in the area. When Maren's daughter was diagnosed with Rett Syndrome, I remembered what it was like to get the news that my life was going to change forever. That I was entering the "special needs" arena. I felt a different connection with her ~ and her attitude, her realness, her drive and determination have made me respect and love and be in awe of her even more.

Recently Maren asked a group of women to share "How I Do It." She asked li'l 'ole me to be one of those women. I was flattered. Today, my post is up on her blog. I have written about Samantha many times, but I've never sat down to think about her and our life in these terms ~ how do I do it? It was good for me to write. So, go on over and check out This Mare Eats Oats...and while you're there, check out the other stories. They are truly inspirational.

Normal

Sweet Samantha,

On Wednesday you attended Scribbles and Giggles for the first time. They called me about 45 minutes after you had been there and said you had a fever. I rushed over to pick you up...and you know what? You were happy and giggly and looked just delighted to see me. Yes, you have a way of making a mommy feel ultra-important. The rest of the day at home, you were a gem -- so I figured you had gotten into your tricky ways and somehow managed to make the thermometer read wrong so you could play hookie and hang with me the rest of the day.

Thursday, off to school you went -- and had a great day.

Friday, no school. You have one month break. We played, opened and shut doors -- oh wait, I already said we played, and you were fine. Until, last night.

At midnight you woke up and were upset. Daddy went in and calmed you down. You fell back to sleep. Then at about 4 am, I heard you cry. You weren't screaming, which is what you normally do...your own way of letting me know "I want out of here and I want MOMMY told hold meeeee!" You were more complainy. So, I jumped out of bed and went to the room. You naturally woke Callie up and when she saw me come in, she was very distressed about the entire situation. I picked you up and sat in the room with both you and Callie. You were burning up. You had a fever of 102 -- and I actually think it was a little higher than that, but I didn't get a really good reading since you weren't being super cooperative about me putting the thermometer in your ear. Poor girl. You "slept" with Daddy (apparently you actually nuzzled and kicked for about 3 hours) and I went in bed with Callie and slept with her.

The rest of the day you've been pretty great. Callie has a fever now, but neither one of you have any other symptoms. You're eating well, complain as usual, smile and giggle as usual, are drinking well.

I've recently started working on a project and it's made me think a lot about how different our life is from everyone else's around me. It hasn't made me feel bad or anything -- an observation more than anything. Back in the early days of microcephaly, seizures, hospitalizations, therapies, the global "special needs," I often felt like no one around me understood. I felt so alone, so different. I do recognize that our life is much different than many others. Today though, we were playing on the deck, and as you were stumbling around, trying to pick up and throw Callie's bike to and fro, I thought about how "normal" our life really is -- how we really are just like every other family out there.

We have two beautiful daughters.

You both love us.

We love you both with everything we have in us.

We do everything we can to fulfill both of your needs.

Both of your needs are vastly different.

You get sick.

You get fevers.

You bring us joy.

It goes on and on. And I could certainly write some sentences after each of those statements as fillers -- explaining how our life is different from other families, because it is -- but really, when it comes down to it...we aren't all that different are we? We're pretty normal. And today, I really felt it. In a way, this realization was a tender mercy from the Lord. I think I needed it, and I know He knew it.

I love you so much. I hope you get that. I hope you understand how deeply I feel about you. You are beautiful, clever, and perfectly amazing in every way. You are the sunshine in our life. You, and Callie both, have made my life more complete.

I love you to pieces -- and I love all your pieces.
Mommy

Michigan

Dear Sammers,

We are having so much fun visiting family here in Michigan. We just spent an entire week at Aunt Lisa's and Uncle Adam's. You loved playing with your cousins, and they so much loved playing with you. Despite all the sunscreen, you're bronzing up like the bathing beauty that you are and you've just been really happy here. That makes me happy. Like, sincerely, deep to the marrow in the bones happy.

I love that you love playing in the yard.

I love that you have been wearing your bathingsuit a lot.

I love that you have been opening and closing doors here with such joy and gusto!

I love that you turned four while we were in Michigan.

I love that you were introduced by Callie individually to all the goats at Domino's Farm.

I love that you haven't had a seizure even though you woke up all stuffed up.

I love that you are my little baby girl.

No matter how old you are, you'll always be my baby girl.

I love you.
Mommy