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


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.


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