Thursday, November 15, 2012

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

Sunday, September 23, 2012

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!

Friday, September 21, 2012

O Brother!




Sammy's a big sister again!  
Welcome home baby Micah!  We love you so much.

Tuesday, July 31, 2012

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.

  

Wednesday, June 6, 2012

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.    

Wednesday, May 30, 2012

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.

Friday, May 18, 2012

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!

Monday, May 7, 2012

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.

Friday, April 20, 2012

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


~*~*~*~*~
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


















Wednesday, April 4, 2012

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.


Tuesday, March 27, 2012

Progress Report

Yesterday, Sergio was so excited about Sammy's progress that he was giddy!  Here's what's been going on:

* She can hold positions that she couldn't before: standing, half kneel on both sides, upright kneeling, and a 4-point crawl position.  She can hold these positions, on her own, for 2 seconds.  May not seem like a lot, but it's a big deal.
* Samantha is beginning to really walk.  Before, she used momentum to go forward.  Now, she is starting to actually pick up her legs and move.  It's cool to see.
* She's much MUCH calmer.  Both Bryan and my mom have commented on how much easier it is to hold her.  Seriously, over the past 2 weeks, she has calmed WAY down.  It's been almost strange to see.  And it's not just that she's tired.  It's different.  I can't explain it.
* For the first time, my mom saw Samantha pick up a Cheez-It one right after another, and put it in her mouth, instead of just swiping her hands around trying to pick food.  She does it very well with her left hand and still struggles with her right hand (her tighter side)
* She seems to direct her mouth to a spoon better when eating
* We bought a new cup for her, and she is figuring it out.  She isn't holding it yet, but she is drinking from it better.
* Samantha does stand up more erect more often.  When she's on the go, she'll bend over, but she will stand up straighter more often.
* Her gait was a little slower at times today...has more control.
* Sammy's arms are soooo much more relaxed.  Look at those arms!  This was on a walk on Sunday.  The entire time, her arms were down.  Now, this is the normal for her.  Today in therapy, she was in the stander having a snack.  She kept her right arm down the entire time and used her left hand!  Wait a minute...I just realized something, that's a bigger deal than I first thought....
* Today, during her snack, her right arm was down by her side as she ate with her left hand.  This was of her choosing.  Instead of having to have both hands working at the same time (which is normally the case), they were working independently.  Um, woa!
* My mom was singing with her, and Samantha mimicked 3 sounds immediately after.
* Overall, she is sleeping better!  Hallelujah! (and knock on wood)



* Samantha is starting to pull up her pant leg ALL the time (eating it only this once).  Is this the first sign of maybe one day being able to dress herself?
* Today in the car, she took her shoe off.  I have no idea how it happened.  I heard the velcro, but she has never taken the shoe off.  Again, I have no idea how it happened, but she got that shoe off!  I call that progress (even if it's potentially annoying)

Way to go Sammy Sam Sam!

Thursday, March 22, 2012

Samantha's Doing Great

Wow.  This trip to Utah for therapy has been so much more than that!


1. Drive from California to Salt Lake City and stay with my friend for a week.  She has her baby a bit sooner than planned.
2. Come down to Provo.
3. Marcus flies into town for the weekend because Samantha is invited to be the BYU Football Team's Thursday's Hero Awesome
4. Since we're here, we travel a bit to try some alternative therapy for Samantha and my mom.
5. The Daily Universe (BYU's newspaper) comes to Now I Can to interview Tracey (founder) and interviews me about Samantha.
6. Buy some doTerra oils and sign up to be a consultant and seller.  If I sell some, great, but I signed up for the discount really.  We'll see how they work for Samantha.
7.  Oh yeah, and we're here for therapy.  Sheesh.  We've been so busy.

I can't believe we're already approaching the end of week 2.  I'm so glad we're here for 4 weeks.  Here are some changes in Samantha that I've noticed since being in Utah.

*  Samantha sleeps with her arms straight.  She has never done that before, but many mornings, when I pull her in bed with me, she lays flat.  Incredible actually since she is always so tight and curled up.
*  Though she is always pretty verbal (aka: loud), this wasn't a huge thing to me at first, but Sergio has said that she is more verbal with him during therapy than she's been in the past.  They "talk" back and forth more.  He said it seems more conversational.
*  The other night, she was crying.  I went in to see what was wrong.  She was saying "mommy."  I've never heard her say Mommy.  Mama, yes.  Mommy, this is a first.
* Overall, she is much calmer.  It surprises my mom and stuns Sergio!
*  She can hold a static position longer.  Before, she was unable to truly sit still in good form for more than 20 seconds.  Now, she is holding some positions for over 30.
* She is standing taller and straighter.
*  She is flat foot more often.
*  Her natural position is to have knees bent, tummy tight and tucked, slightly bent at hips, shoulders hunched, and arms bent.  Anywhere she can fold in, she will.  Those "bends" aren't as severe.
* Her hands seem noticably more open and relaxed.
*  I sat in the back of the car with her the other day.  She held my hand.  Not, Sammy-I'm-going-to-hold-your-hand-and-you'll-like-it, but she sincerely held my hand when I reached over for her.  She's never quite done it like this. 
*  Today, during her snack, at least 90% of the time, she picked up the food she wanted and got it in her mouth!  That is HUGE!  Yesterday, I was watching her struggle and I sad and frustrated for her.  Today, she was a new kid.  Here's hoping that sticks!  Nearly everything she went for, she picked up on the first try and got it in her mouth.  That's either huge progress, or starvation is a bigger motivator!


Friday, March 16, 2012

One Year

Yesterday, I met a new friend.  I took Samantha and Callie to Rock Canyon Park to play and relax before I went out with some friends.  Grandma and Grandpa would be putting them to bed, and I was trying to assure that they would, indeed, be tired and go to bed -- the kids that is.  While at the park, I met Argie.  She's a dear older woman with a heart of pure gold.  She then introduced me to her daughter-in-law.  I was briefly told the story of Julie's son, Brigham, and felt that there was a reason we met that day.  I felt uplifted by her tenderness, sincerity, and the immediate connection with her ~ all of this needed after a rather tough emotional week for me. 

We exchanged contact information and this morning I spent some time reading about dear Brigham Reneer online.  I read an article in the Deseret News.  I read from Argie's blog.  I read as much as I could because I was just falling in love with this boy's smile, courage, and Christ-like example.  Truly. 

Death, itself, is not what hurts my heart.  I do not cry for those who pass on, but for those who remain and wait for their reunion.  It's the days, weeks, and months that follow that I often think about.  I think about the small moments when a parent passes their child's empty room.  Or when that darn lost sock shows up in the laundry basket and sparks uncontrolled tears.   

At the one year mark of Brigham's death, family friend's created a video.  I watched it and was so touched at how they explained the first year without their son.  It is beautiful and real.  Painful and filled with hope and love.  Charity.  Pure love.

It has been over 2 years since Brigham passed away and Julie still teared up as she told me how hard it is to take care of our special needs kids, but when they're gone, we miss it...every little tough thing about it, we want it back.  The Savior can heal our hearts.  I have no doubt about that.  But I also believe when you love so deeply like that, tears will still flow...even for an earthly lifetime.  


Thursday, March 15, 2012

Reality Check

Being a mom isn't what I could call "easy."  And that's ok.  I kind of knew that coming into the job. 

Being a mom.  It's a tough job. 

And it gets even harder when you have to make all these decisions about therapies and treatments, surgeries and equipment. 

Today, I feel overwhelmed.  Of course I want what's best for Samantha.  Don't we all want what's best for our children?  And yet, with these little ones who struggle to move, eat, or even breathe on their own, I want so much more for her...or maybe less depending on how you look at it.  I've never had such a deep desire for every day things that we take for granted.  All those simple tasks.  Simple skills.  Simple stuff.  I want that for Sammy.  I've never dreamed about my kids being the next president or famous engineer.  But I never dreamed that I'd so deeply desire them to move "normally" or eat on their own either.   

I have felt on many occasions that there was so much potential within Samantha that just needed to be unlocked somehow.  (Maybe I'm too focused on unlocking the wrong kind of potential ~ a thought that just occurred to me and that I'll have to think about more.)  And so I research.  I read.  I search.  I ask questions.  I try to truly figure out what is best for Samantha.  I mix and match what I think is working, or will work for her.  Why?  Because I really feel like those things will help her.  Much of it is trial and error, and other times I feel divinely led.   

And in all that we do for her, I still feel discouraged and sad at times.  The past week has been hard for me.  I've had difficulty keeping my emotions in as I've watched Samantha around other kids.  In the past, I had compared her.  I don't do that so much anymore because to me, Samantha is her own little person, and all considered, I'm really ok with that. 

But during this week's time, we've played with cousins, friends, and strangers at the park.  In all the situations, I've watched with joy as Callie played and had so much fun with them, while my heart broke watching Samantha wanting to play with them but couldn't.  She kept going towards the kids, but they just pass her by.  It's ok.  I'm not saying that these kids should stop and play with her.  I get that 100%.  It just made me so sad to watch.  And it made me even more sad when she'd cry because she wasn't playing with them.  At first I didn't recognize it as that.  But as soon as I relocated her to be near the other kids, she was happy. 

Samantha has always loved people and being around others.  Aside from any other desire I have for her, my deepest desire is that others will love and want to be around her too.

Here I am, doing all these therapies for her, feeling confused about what is best...liking bits and pieces of this, all of that, parts of something else and trying to figure out how to make them all mesh together and work for Samantha...and what tugs at my heart is ultimately how it will all play out in the end.  Will all of this really help her achieve not just a more functional life, but a happy one as well.

Being Samantha's mom sometimes is not easy.  And I guess it never will be until my heart is separated from hers.  But, I'll take it.  Forever.  
  

Tuesday, March 13, 2012

Better

I was about to sit down and update Samantha's blog.  It's been a while and I felt like it was time to post some new stuff.  We are in Utah again for Samantha's therapy session at Now I Can.  I wanted to talk about our trip out here and how she's doing today.  But I've had very limited internet access since being here...and so I thought I'd take some time to catch up on blogs I follow.

I wept as I read about Caleb's last 24 hours with his family.  I am not sure how a mother goes through that pain of losing their child, yet I know people do it every day.  I have been so touched and strengthened through the pain and loss of people like April and Becky and Erin, and so many others.  It sounds so selfish and horrible, actually, but it's true.  During these painful yet sacred moments, as these valient women, who I consider my friends, walk through their own Gethsemanes and then truthfully share their raw feelings, they radiate their faith, testimony, and pure love.  There is no doubt in my mind that the Spirit is nearby, that their children are nearby, that angels are surrounding them, and that the Savior knows their pain.

I am forever changed, and a better person, for knowing these mothers, families, and these angelic children.  My heart aches and I weep, sometimes sob, thinking about their loss, but they make me a better person.

So, I will update later, and I for now, I'll let their words and spirits simmer in my heart as I continue to daily pray for them.

Monday, February 27, 2012

Stander

Oh, there's been so much on my mind that's it's been hard to sit down and actually begin.  Does that ever happen to you?  I'll have some time in the near future to sit down and think...and write...but until then:

Today Sammy got a stander.  Yep, her very own Lecky stander.  It's a strange feeling.  I was actually really excited for it, but this is our first big piece of equipment.  It's a weird feeling.  More on that later.  Until then...we will be standing as we snack.

Tuesday, February 14, 2012

News Flash

Last weekend, Michael Ririe displayed the photographs of kids working at Now I Can that have been published in his book.  The exhibit was fantastic (so I've heard) and I'm so excited to get my copy in the mail.  KSL did a news report of the event and they used Sammy's picture in a few of the shots.  Pretty cool.  You can see it here.

LinkWithin

Related Posts with Thumbnails