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.  

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.  

  

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.

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.

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.

Movin' On Up

Sammy,

I want you to know that I'm always here for you.  Moms are kind of important people (thank you very much).  We are a source of great knowledge, wisdom, and infinite love.  Use me.  Ok?  Good.

So, remember when I was feeling so sad?  I talked to my mom...Grandma.  And you know what?  All she did was listen, and then after all the listening, she said one little sentence that somehow made me see everything differently ~ or begin to.  And, I feel like I'm moving back up to where I was feeling before.  Like I said, moms are kind of great. 

Then, the next day, after writing that letter to you, something pretty awesome happened.  We saw Tiffany.  You know, she's your OT.  I'm glad you like her because she adores you.  At least she really seems to.  You were up for your 6 month evaluation, and do you know what?  You rocked it.  We could only do part of the evaluation because Tiff and I were talking so much and you were enjoying the swing so much, so she just kept you on as she worked on your balance.  ANYway.  Did you know that only 1 year ago, one of your goals was to put a small-ish object into a bowl/bucket, hand over hand, with minimal assistance?  A year ago, you didn't want your hands touched.  You didn't want to be directed.  You were a tad challenging, my dear.  But on Tuesday, you took 6 small blocks and put them in the bucket, by yourself! 

By yourself Sammy!!!

I cried happy tears.  I felt like a dork, but I couldn't hold it back.  And then Tiffany teared up too.

You have such a light about you Sammy, and I just know that as you continue to progress and gain better control of your body, you will be able to express what is in your heart.  You have left a mark on this world Samantha Lee.  And you have a bright future ahead. 

I love you so much.  I'm totally smitten.

Mommy

A Mess

Samantha,

I love you.  There is no question about that.  I adore you.  I can't imagine my life without you.  And I know you're molding me into a better person everyday.  I know it.  But evenstill, sometimes my heart aches.  You've been doing so well lately.  You haven't had a seizure since last March (knock on wood) and hopefully that means that we've finally turned a corner with those blasted seizures.  Something seems to be clicking for you recently...a lightbulb has gone off.  You are giving more eye contact, seem to have a desire to DO things, and overall, I just couldn't be happier. 

Except. 

I'm not.

I feel horrible about that.  I know the blessing you are to me.  And, yet, I have struggled this past week more than I have in years.  Seriously.  Years.  I haven't felt this way since you were an infant.  You, in your Samantha fashion, have been waking up way way too early.  The other morning, as I tried to get you back to sleep on the couch, I wished you were "normal."  Oh, it makes me sick to even say that...but it's true.  I wished you didn't have to move your fingers constantly.  I wished you'd stop rubbing your face against my shoulder.  I wish you were able to hold. still.  I wished you would sleep.  I wished you could say words.  Words.  Just thinking about you being able to TALK makes me cry.  I look at this picture, into your eyes, and I know you have something to say.  So...Say It.  I wished you didn't have tight muscles and you didn't have to wear stinkin' braces on your feet that rub against your skin and give you sores.  But do you tell me about it?  No.  I just discover it.  I wished you didn't have the necessity to chew on your fingers, incessantly, leaving you with chapped skin.  I wished.  I wished.  And I wished. 

And then, I felt really bad that I had wished all those things instead of wishing for a patient heart. 

But, that's what I'm praying for now.  I'm not exactly sure why things are hitting me like this right now.  It's been a long time.  I understand that this is probably normal.  But I don't want to be "normal," just like deep down, I'm not sure I want you to be "normal" either. 

Until I figure this mess out, know that I love you so so much.  And all this stuff I wished for that morning, YOU I would keep the same ~ and if that means keeping all the rest, ok.

I'll work on my attitude.

I love you,
Mommy