Sunday, May 29, 2011

How to Properly Thank

I had some thoughts today that I shared over at The Green Piece.  It's something that I realized today -- about the love of the Lord.  And I just have to say, I feel so blessed.  I'm not saying that if all of stuff wouldn't have happened that I wouldn't be a blessed person.  Because, truthfully, I feel like my life is a testament of the Lord's involvement in our lives daily.  But, I'm just saying that I know all this goodness has come because of my Heavenly Father.  I just recognize that all this is one, big, fat, huge blessing...and it's incredible. 

Which leads me to this question:  How do I adequately express my gratitude? 

I'm a huge believer in thank you letters.  I believe they should be handwritten (though some of our business sponsors will only receive typed out letters, and our participants received an email...tacky?  I hope not.).  I believe they should be individualized.  And I believe, above all, they should be sincere.  Ok.  Great.  That's my belief on thank you notes.  So, I can send those...and I have and will continue to until they are all done.

But how else? 

I have discussed with Marcus the desire to begin our own non-profit organization where we can not only continue to fundraise and people can get the tax benefit (thus making it easier to fundraise), but we can pay it other families who are similar.  Sweatin' for Sammy was great, but how many other kids are there in this community that we could sweat for?  I don't know.  It's a lot to consider and a lot to organize, but we are seriously (or at least I am seriously) thinking about it right now.  I have a name in mind, even.  Yeah!  I mean, sometimes that's the hardest part, right?   Who knows what will happen, but I get pretty excited about the idea -- about helping others feel what I've felt recently.  Oh the joy we could feel as we give a helping hand to families who are trying so hard to help their special children.  Pretty exciting stuff.

So, you out there...who's done it -- started a non-profit?  What do you suggest?  What do we need to know that we're maybe not thinking about?  Tell me your thoughts, suggestions, successes, and what to avoid.  I need the good, the bad, and the ugly if we're going to make this work (and I really want to).

Tuesday, May 24, 2011

What's the Diagnosis? Part 1

Now that Sweatin' for Sammy is over, I have other things that I need to focus on again.  Everything else I was involved in was a little neglected, and so now, real life begins again.

One of those things is working with the geneticist here.  When Samantha was born, she was diagnosed with Primary Autosomal Recessive Microcephaly.  We were given information and sent on our way.  There really was no need for follow-up.  There was no genetic test that could be performed to confirm the diagnosis, but she seemed to fit the diagnosis pretty well.  Ok. 

While living in Spokane, Samantha's pediatrician (Dr. Olson) was very much involved in the special needs community.  He suggested we see a geneticist because he was pretty certain there was now a test for this rare condition.  We visited with the geneticist, and she said she thought the original diagnosis was accurate.  We discussed all the same stuff, so none of it was new to me.  As is customary, I received her notes from that appointment in the mail.  This time, however, I either didn't read the report, or didn't notice "seckel syndrome" on that paper.

Last year a family friend passed away, leaving behind his wife and young child.  He was about Marcus' age and it really got me thinking about ... life.  How fragile it is.  How we just never know.  And I got thinking about losing Samantha and it made me sick.  So many of you have lost your children, and my heart breaks for you.  I just can't imagine my life without Samantha or Callie.  I decided that I wanted to give one more shot to finding out if there was a genetic test out there that could confirm her diagnosis -- Primary Autosomal Recessive Microcephaly.  What if she didn't have that?  Are there things we should be keeping on eye on that we aren't simply because we don't really know her diagnosis?  Heart/lung/bone issues?

When we moved to California and Marcus got a job with Kaiser Permanente, I decided it was time to investigate.  I have done a majority of this on my own, as not to stress out Marcus while he endures a stressful year.  I got Samantha's DNA tested (the new microarray test), and it came back "normal."  A genetic counselor has been gathering all our files and we now have an appointment for June 3 to meet with a geneticist.  The geneticist will meet Sammy, measure her, we may get some scans done, possibly additional blood work (not all at once most likely).

I'm not sure what to expect.  At first, I thought "Ok, maybe she has Seckel Sydrome."  But Seckel Sydrome comes with a lot of complications...higher risk of leukemia is one.  Marcus is terribly stressed out thinking of what we may hear that day, and I'm just not sure how I feel.  I'm the type of person who likes to know it all...lay it out on the table and I'll go from there.  But I can also be very "Who knows?  And there's nothing we can do about it anyway." 

The geneticist we met in Spokane, looking back, seemed less thorough.  I'm not sure how many records she had of Samantha's.  She didn't measure her.  And, she states in the report that Samantha "was referred for genetic evaluation by Dr. Olson's office due to a previous diagnosis of primary microcephalic dwarfism (Seckel Syndrome)" yet that's not the original diagnosis that she had.

So, was she just careless?  Or doe Sammy really have Seckel Syndrome, and we now have to watch for life-threatening anemia and signs of leukemia?  I have always felt blessed that we knew her diagnosis early on; we've never had to search and search for what she may have.  But now, I'm starting to wonder if we are just beginning a process that I never imagined we would.

Jenny.  Welcome, again, to special needs living.  Right?

Sammy sitting on the deck, watching her sister and cousins run around.  She's amused.

Monday, May 23, 2011


Sweatin' for Sammy -- 5k was a huge success.  Some of the highlights from the day, for me, include the following:

* Seeing Kelly Dippel there, ready to walk with her coffee mug in hand -- she had been up until 4:30am the night before, and was there ready to do this for Sammy!
* Being at Quicksilver at 6:30am, when it was quiet and peaceful (and cold) and feeling that surge of energy and excitement with simultaneous peace 
After the 5K family picture

* Knowing that volunteers were working at Hellyer Park in order to make this event free for us...incredible...knowing that they weren't with us at the 5K but off-site working for Sammy...feel a lot of appreciation for those guys.

Christine Valasco, our timing guru!
* When Jackie (who vounteered in our committee but has never met any of us or Samantha) met Sammy for the first time.  It was magical for me.
* Seeing Sammy in that oversized Sweatin' for Sammy t-shirt
* The incredible turnout (and the 40 additional people who registered the day of)
* Seeing the awesome banner that FastSigns donated -- awesome
Part of the Davis family.
* Being with my brother and his family who we don't get to see terribly often
* Meeting a woman who wants to hold her own fundraiser for Samantha
At the start line -- all ready to take off.
* Meeting a husband and wife who read about Samantha in the newspaper and decided to come out to donate and give us the blanket she made for Samantha (for the record, I LOVE this blanket and slept with it Saturday night.  I have to keep reminding myself it's for Samantha -- not me!)
* Getting to the top of that blasted mile long hill!
Our gorgous banner.
* Drinking ice cold water up at the top 
* Crossing the finish line with Sammy and seeing the crowd cheer and clap for her.  Quite emotional.
* Being surrounded by family
* Being surrounded by friends
* Being surrounded by strangers who were there for my little girl...humbling feeling
* All the volunteers!

Jen and I before people starting coming in.

* Seeing all the awesome t-shirts that said Sweatin' for Sammy.  It was just a cool feeling knowing that they were all wearing Sammy's shirt.
* Sammy totally happy during the walk/hike and yelling "Go!  Go!"
* Watching people get their medals at the end of the race
Kelsey Black, Sydney Black, Diane Black (event planner/coordinator/goddess), me, Jennifer Williams, Lori Ellington, Marty Judd, Kim Nelson, and Ranger Patrick right in the center.  I loved our ranger.  He was so helpful and made sure we had everything we needed.
* Amazed seeing how many people stayed after the race to just be there
* People taking pictures with Samantha in front of the banner
* Having Marcus by my side
Penni and Chad.  So much hard work from this fine lady!
* Announcing we have enough money for Samantha's 1st session of therapy and hearing those cheers!
* Going to Subway and Pinkberry after the race and seeing how many people were there.
* Talking to a man who participated and he, not knowing I was Samantha's mom, expressed how deeply he felt about the race (I did tell him I was Sammy's mom...and he gave me a hug)
Callie was such a good sport and had a lot of fun.  She took the microphone from Tom Pack and invited everyone over for a party.  The crowd liked that idea.  That's our Callie -- always up for some fun!
* The hugs from so many people
* The fabulous nap afterward!!!
* Callie taking the microphone and inviting everyone over to "my house" afterwards.

Trail of runners at the trail head
And that's just a few of the highlights.  It was an incredible incredible day.  I talked to my mom on the phone later that afternoon and tried to express some of the feelings I had there.  One thing that was overwhelming, was this sense of family.  There were definitely people there who I know and would call family -- aside from my actual family members being present.  And, of course, there were complete strangers there as well.  Yet, noone felt like a stranger to me.  They were all there for Samantha.  We had a total of 179 participants on the trail, in addition to our abundance of volunteers.  We were a large group, but we were small.  It felt very intimate.  We were on a hard trail, immersed in nature, walking/running/hiking/sweatin' for Sammy. 

As people have already discussed plans to do this again  next year, I think about all those who were there on Saturday and the intimacy of that event -- the closeness and the love -- and I feel so blessed to have been there with these people who were there in the beginning of, what I feel, is the beginning of a journey.

This 5K has changed my life.  Yes, it is helping us to cover therapy expenses, but it's more than that.  It has changed me.  To see not only the willingness, but the excitement, and, almost a passion, in these people -- all for Sammy -- it has changed me.  And I'm so excited for our next chapter. 

Thank you to all who helped, volunteered, attended, etc. 
The after-the-5K-party where Subway donated 15% to Sammy.  Pinkberry donated 20% -- didn't get a picture there, but we had a lot of people hitting up that frozen yogurt!

Monday, May 16, 2011

Amato's and More

Tonight I went to Amato's Pizzeria.  Let me just say, I was in awe.  First, yes...we did a Chevy's fundraiser back in April and the turnout was shockingly amazing, to say the least.  Tonight, while I was there, the crowd was smaller, but just a glorious.  I saw friends and family.  I met Mahmood, the owner of Amato's.  He is a kind and generous man.  To name a few things, he bought an acquaintance's shopping items in the checkout line once without her knowing it...until she went to pay and her bill ended up being $5.49 (when the value of her purchase was clearly much much more).  Another acquaintance was stranded and he drove up a rental car to give to her so she wouldn't be stuck.  There are plenty of other stories like this.  He's just a good man.

Mahmood doesn't know me personally, or Samantha.  When he heard about her, though, he decided he needed to get involved and whipped up this fundraiser.  He then told Kelly (I'll introduce her in a moment), "After tonight, I'll write a check for $500 in addition to whatever the fundraiser brings in."  I mean, really.  He also offered his restaurant to me for a silent auction, or anything else we would want to use it for.  This man beams charitable love and goodness.

I also met Kelly Dippel tonight.  She's a petite woman with a powerful drive.  This lady is incredible.  My friend, Penni Allen, decided that she needed to have a meeting with Kelly -- since Kelly was awarded Most Influential Woman in Silicon Valley a couple years back.  Now, it's obvious Penni has some drive of her own!  Kelly, once hearing about Samantha, got involved.  Her organization, Silicon Valley Cares, took Samantha on and got the word out.  They have their members participating in the run.  They are advertising it.  Their PR person, Cheryl Ryan, wrote an article that will be going in the Almaden Times on Wednesday (by the way, Cheryl was delightful...very warm and beautiful).  Kelly talked with Mahmood and instigated the shindig tonight.  Tonight, I met Kelly's other members on Silicon Valley Cares.  They are all like her -- kind, warm, generous, loving, wanting to make a difference in the lives of people living in their community.  I was so touched by their goodness.  And as they gushed over my baby girl, I was so proud to be Sammy's mom. 

I feel like a broken record saying this, but I feel like Samantha is so much more than this one child.  I feel like she is truly representative of the impact one child, one individual, can have on an entire community.  It's amazing for me to witness. 

So, tonight. Thank you to Kelly Dippel and her crew.  Thank you to Silicon Valley Cares.  Thank you to Mahmood and Amato's Pizzeria.  Thank you for loving my little girl and showing it through your service.  It has left a deep impression on our hearts.

Friday, May 13, 2011

In the Mouth

I came across this old picture today.  This was last Christmas.  Oh, Sammy.  She used to love this window shade...not because it kept the sun from her eyes, but because it was a great toy.  She'd pull it and hit it back and forth...and on this day, she found it to be a nice chew toy.  Great. 

Lately Samantha has been chewing on her fingers a ton.  I'm not exactly sure why she has reverted back to chewing her fingers, but I hate it.  I really do.  The tips of her fingers are getting dry -- from always being wet (strange if you take the time to think about it).  She is approaching the big #5 birthday, so it was suggested to me that her 5 year old molars may be coming in.  Maybe.  But whatever.  She's still my cutie patootie with a tiny little bootie.  I love my girl.

Thursday, May 12, 2011


"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.

Tuesday, May 10, 2011

When You Know Her

Recently, I've read two articles in two different newspapers, written by two very different people...about Samantha. 

The first article was written by a local journalist who writes for the local paper here.  Her articles are picked up and published in the San Jose Mercury News.  She's been a writer for a long time.  Though I didn't know her personally, my experience with her was very pleasant.  I was touched by her kindness and sincerity.  As I've posted earlier, her article can be found here

Then, just a few days later, a second article was published in The Eleight -- Leigh High School's newspaper.  This article was written by a senior who writes a column about her senior experience.  I don't know how long she's been writing, but she's talented and has a bright future.  I happen to know this journalist personally, and my experience with her is always pleasant.  I am constantly touched by her kindness and sincerity.  She goes above and beyond what others would think of as "nice," "generous," "thoughtful."  She takes after her parents that way...they're an awesome and poweful force...this incredible family.  Her article can be found here, and it's worth a read. 

There are some similarities in these 2 articles:
* The subject: Samantha
* The plug: Sweatin' for Sammy 5k
* Some back history

However, as nice as both the articles were, Ms. Sydney Black's was just so touching to me.  Why?  How is it that a senior in high school could evoke such emotion from me?  Naturally, I was touched that this person I knew had such strong feelings about Samantha...but that's just it.  Sydney knows Samantha.  She plays with her.  She helps me with therapy.  She holds her and comforts her.  She sees her every Sunday and throughout the week.  She's part Black, part Green. 

And it's made me think: what happens when we get to know people?  For me, I become more invested -- especially if I like ya -- and more attached.  I feel more deeply.  An article about a situation/story/or little girl can be touching.  But when it's written by someone who knows her...when you know's just so much different.  And...that's made me think.  Don't we all have someone in our lives that we just wish people would take the time to know?  We think when you get to know her...if you'd just take the time to know him like I'd seeYou'll fall madly in love with my little girl when you know her.

Anyway...just some thoughts swirling around the 'ole noggin tonight.  I'm feeling very grateful for my friends, and for strangers, who already are falling in love with Samantha...and I sincerely hope that they'll all get to know her on a different level one day.  Possible?  Probably not.  But a mom can still hope.

Monday, May 2, 2011

Christmas Flashback

Came across this picture tonight and had to laugh.  Yep, this was in the middle of filiming our rendition of "How the Grinch Stole Christmas" and of course Sammy was one of the whos from Whoville.  Oh, love this picture!


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