Better

Poor Sammy's been having some serious problems with her feet.  I usually don't get into the pity-party mode, but a couple weeks ago I was so frustrated and just thought... "Most kids don't have to deal with this.  Most MOMS don't have to worry about this."  And I was just upset and sad and frustrated and annoyed.  

The story is long, too long, to write.  But a lot of factors played into why Sammy's right foot has gotten so bad.  Some of those factors are bad decisions made by professionals.  Whatever.  Moving on.  Below is a picture of her right foot.  She had worn her night cast -- she wears casts at night to stretch her achilles tendon as she sleeps -- and this is several hours after her cast has been off.  Look at that redness.  This picture was taken last week and it's now beginning to fade after not wearing casts or braces as she should.  

So.  Frustration. Anger. Annoyance. Sadness.  Back to that.

During the Christmas break, I took time to really work on Sammy's legs and feet.  She would be home all day and I just knew I could "fix" it, or improve her foot at least.  I began to massage her feet and legs 2x a day.  Whenever she was standing and playing, I'd come up to her and put downward pressure through her hips and legs.  I used essential oils as I massaged her.  She took many more warm baths than she normally does, so we could loosen her up.  And all those feelings I had had melted away.  They were replaced by love and gratitude.  I was helping her.  And that time we spent together was happy time.  It wasn't always easy, but I knew I was helping her and there was an exchange of mother/daughter love during those times of service.

I love being Samantha's mom.  She adds so much light to my life.  I'm constantly reminded that those harder times are important because they bring added joy to my every day.  And, every day, she makes me a better person.  It never fails that I only recognize this AFTER the problem, but that's ok.  I'm still trying to be better.  And she's helping me.

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.

You Make Me Proud

Samantha,

I love you so much.  And you are doing so well.  You are making it through your second full day at Now I Can and you are taking it like a champ.  Yes, you yell and cry at times.  But right after, you are so smiley and it makes everyone here so happy.  I love seeing your progress.  You are already standing taller and straighter.  Imagine what things will be like for you if you can just understand how to stand better.  Your world will be more accessible for you.  You will realize that walking correctly is actually easier...you always do try to make things more difficult than they need to be don't you?  Well, let's work on that ok?

You're a rock star.  Just thought you should know.
Love you,
Mommy

It's Been Awhile...

Hey there little Sammy,

It's been awhile since I've posted on your blog.  This is why...

We've been working like crazy lately.  We recently decided that for sure we were taking you to Now I Can.  Once the word got out, we got fundraisers like crazy going on.  We did a restaurant fundraiser at Chevy's.  It was a hit.  Diane Black started researching, and then creating, a 5K for you scheduled for May 21 (the day after my birthday).  I can't think of anything I'd rather do to celebrate my birthday than run for you.  Sweatin' for Sammy.  I like the ring of it.  I came up with it after Daddy said he wanted something fun and with alliteration.  That was the first thing that came to my mind -- after Sauntering for Sammy, but I wasn't really serious about that one.  Don't worry.

Scott Emert -- you don't know him but Uncle Ted played soccer with him for years and so, I know him too, is putting a fundraiser together for you while we're in Michigan this June.  He, Jason Emerine, Scott Wickham (who I had a crush on back in the day -- and now he's doing this for me...strange really) and some other guys are putting a silent auction together.  It's pretty incredible.  Their new goal is to earn enough money to get you to Now I Can TWO times. 

I've been overwhelmed with the ourpouring of love. 

On Thursday, when I dropped you off at Scribbles and Giggles, Ann (manager) said, "She must bring you all so much joy.  Look at her."  And you know what?  You do.  You bring us so much joy.  And what I have discovered is that what I thought I knew -- that you bring joy to others around you -- is actually true.  People want to do so much for you because you do so much for them, in your little way.  You are great, Samantha.  And sometimes I stand in awe that you are mine.

I love you.
Mommy

I Know

Samantha,

There are some days when I am so sad that you can't just tell me what you want, need, or think. It's not so much because there's this inner-aching within me to hear your voice...though that is there definitely, but because I simply want to know. I want to know what you're thinking. I want to hear everything you have to say. And yes, I'd love to hear your tiny voice tell me the things all moms want to hear...that you love me. I melt every time Callie tells me, so I'm pretty sure you, Sammy, saying it would have equal effect. Today you spontaneously kissed me for the first time in a VERY long time -- though you freely give kisses to Colin! -- and it made my day by the way.

My friend sent me the Meaghan Smith cd. There's no secret, I'm totally loving this girl. I love her style, her awesome voice, and you and Callie love dancing to "Heartbroken"...but when I got to the song "I Know" I immediately thought of you and all of my favorite scenes from your life passed through my mind. I know this is a love song, but I'm so in love with you -- my tiny little girl. And whether you can vocalize it or not, I'm pretty sure that I know you love me too. And I'm pretty sure, one day you'll tell me in words. And I'm also pretty sure that every time I hear this song, for the rest of my life, I'll be thinking of you.

I love you!
Mommy

It's in our hello
In the way your smile glows
And it's in our good bye
In the tear in your eye
And all in between
When you're lookin at me

I know, I know, I know
What you don't say

It shimmers through
In the things you do
When you write me a note
And send it by the post
What you might not sign
On that bottom line

I know, I know, I know
What you don't say

Words are not needed
And though my ears
Could be misled
My heart can hear instead
What goes unsaid

You'll leave me with this
A hug and a kiss
And that little phrase
Those three words
You can't say
But please don't feel blue
Cause I always knew

And I know, I know, I know
And I love you too

Sweet Moment with Samantha

I've been looking for this picture for a long time now. I haven't been able to find it. This was taken a few years back. Just days before Samantha had her craniosynostosis surgery, our friend, Jeff Allen, took some family pictures for us. He's a fabulous photographer and you can see some of his work here. (Plus he has an awesome wife.) He got a good family picture for us, but this was my favorite picture of the entire day. I am so self-conscious that it's hard to get a picture of me in the moment. I'm always so worried about my big nose or uneven smile...(I know I know...I need to work on that...blah blah blah...be confident...blah blah blah). So, because it's not-so-easy to get an in-the-moment shot, there was just something about this picture that is so precious to me. It is that instant...that sweet moment with Samantha...when I'm just talking to her and being her mom...protecting her from the cool March air. I love this picture.

Jeff, I'll always love you for capturing this moment for me. Thanks.

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.

Sleep

Dear Samantha,

I love you. But I will love you more if you start sleeping in longer than 5am. This is a promise.

Love,
Mommy

Ouch!

Little Sammers,

Do you remember just a couple weeks ago? We were driving to OT to have a session with Tiffany. We were almost there when someone drove out of nowhere. I promise baby, I tried to stop. But we crashed. And you screamed. I was so frazzled. I remember hearing you scream, and then I heard a ticking noise. I tried to get out of the car but had to push the door open. Then I realized I hadn't put the car in park. When I did, the ticking noise stopped. And you stopped crying once I held you. The firemen were first on the scene and they immediately disconnected the car battery. That was the last time that we would hear our little car hum ever again.

Looking at this car makes me feel so grateful. I know there are worse accidents, but you aren't in those. You were in this one, with me. And even though it wasn't my fault, I still think about it often, how it could have been worse. I'm grateful for your car seat! It held you safe and tight. Who ever plans on this happening? Not me.

You know, I'm so glad you're ok. The silly thing is that Daddy and I are both really sad to say goodbye to this car. This car has so many family memories. We've had this one car since we got married -- so that means when we got pregnant, we went out to eat in celebration -- this car taking us there. When we got your unofficial prenatal diagnosis, I cried sitting in this car. When the geneticist advised us not to have anymore children, I cried again, in this car. We have had numerous doctor appointments and emergency drives to the hospital. You have thrown up in this baby, wailed your heart out, and giggled uncontrollably in this car. We also drove Callie home from the airport in this car...becoming a family of four. I ran errands with the two of you behind me, in this back seat, for 2.5 years.

I want you to know that it's ok to have a little attachment to things. There are memories and emotions connected with those. But remember, but they are just things. Remember that Mommy, Daddy, Callie and a whole world of people adore you. They are who you should invest your heart in.

I'm so grateful you're mine and that you're here.
I love you,
Mommy

Two Reasons I love You

Little Samantha,

Tonight, I'd like to highlight just two reasons why I love you.

This evening, I gave you a bath. You enjoyed the bath. You splashed and yelled really really loudly. You had a good time. After your bath, I decided that I would try something new. I decided to blow dry your hair. I've done this before, but not like tonight. Tonight, I used my round brush and everything. You loved it. You loved the loud noise. Immediately you began to giggle. And surprisingly, you sat still long enough for me to get the brush through your hair. I think it was the warmth against your bare skin that you so much enjoyed. Either way, I love the fact that you love loud noises and that it makes you happy. Not only is this just really fun for us, but I feel blessed that you do enjoy loud noises. A lot of special needs children are greatly bothered by loud noises. I consider us lucky that this is one thing we don't need to worry about -- because we sure can be a loud and rowdy people over here.

Second. I went out to buy a bridal shower gift tonight. I took you with me while Callie stayed home with Daddy to watch Caillou. You were very pleasant -- and I was happy to get a few compliments on your hair (see the round brush really does work). But the best part of the evening was when we walked back to the car. It is extremely windy today, and as we walked out of the building, the wind blew in your face. You started to giggle your adorable, contagious giggle, and then you opened your mouth. I love that you open your mouth to catch the wind. It's so funny. You do it every time, and it makes me happy.

Oh little babycakes, you make me happy.

Love you to bits,
Mommy

Faith Not Fear

Dear Sammy,

I wrote this last week and found it in my files -- but for some reason didn't publish it. I'm not sure why. So, though I'm not feeling this way anymore, I thought it was important for you to know some of these feelings I've had. I love you to bits.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
You have taught me a great lesson, though I suppose today I needed to be reminded; I needed to relearn this lesson today. Before you were born, I wasn't sure what our family situation would be. I was told you may die. I didn't believe this, but I prepared for it. After you were born, I was told to expect severe mental retardation. I prepared for that. There have been "little" things along the way that I've had to prepare for simply because I don't know what to expect -- and I was scared.

I'm not really scared of the same things anymore. I'm not worried (as much as I was) about you and what will happen. I know it'll be terribly difficult to handle some situations that may arise, but I believe I can handle it. We, as a family, will be able to handle it. I don't worry for you. I don't worry for your life. I have had many moments that have confirmed to me that Heavenly Father is very aware of you, and I feel very comfortable knowing that you will be taken care of -- that you are fulfilling a special mission -- and no matter how hard certain things may be for me to deal with, I don't worry about you.

But lately, I've been a little scared about the future, because of you. I'm sorry. I hate to say that because really you have been one of the best things to have ever happened to me. You have shaken my globe and all the little snowflakes that are now coming down are landing pretty perfectly -- because of you. Even still, even with this knowledge that I have, I find it difficult to push aside my real fears of having another biological child again, or as we adopt -- if they will understand that I love them immensely, even though at times you require more of my attention. I worry about our future and our children, as a family. I fear for the day when one of your siblings says to me, in all sincerity, "You don't love me as much as you love Sammy." I do the best I can to make things equitable, to teach Callie, to love her, to help her be involved with your care as much as she can, to build a real relationship between the two of you...but I constantly pray for Callie and your other siblings (future) so they know of my deep deep love for them. After you were born, I thought I'd never be able to love another child as much as I love you. I truly thought that would be impossible. But I think you'll be happy to know that it is possible -- that my heart somehow expanded the day Callie entered our home...and I'm confident that will happen again one day when the time is right. So far, just having the two of you, I have found so much joy, true joy, in motherhood. You both bring me joy in different ways, and I fallen more deeply in love with both of you by the hour.

Today in church, Bishop Wallace mentioned "Faith not Fear." That really spoke to me as this is something that I've been thinking a lot about lately. If I can more diligently rely on my faith, then I'll be ok.

I love you to pieces, and I know we'll always be just fine.
Mom

Love

Sammy,

I'm not sure what you can completely comprehend at this point. You are almost 4 years old, and that's a pretty big deal little girl. And over these 4 years, each day I grow more and more in love with you. Your messy hair and gunky nose don't sway my opinion of you one bit. If you can possibly understand one thing, know that I adore you. You are beautiful and wonderful, and I love you. Dad loves you too. No matter how big the room is, your little smile can light it up; you have lit up our world.

We are all born with gifts and talents. Some of us are better at certain things than others...and I often find that I compare myself with the amazing people around me. Don't do that, ok? It's a waste of time. There will be many people who look at you and take pity, or feel bad for you. They see your physical restrictions and make big assumptions based on your small head. Some people may shake their heads thinking that it's all such a shame. There will be some people who see you and are absolutely curious. They want to know all there is to know about you, because let's be honest -- there's not a whole lot of kids like you -- you are special in the truest sense of the word, but they won't know how to ask. So they may come of ackward or even kind of mean. That used to make me feel bad. I used to cry when that happened. But, I see now that they are just trying to figure things out...and having never approached this before, they stumble or don't think before they speak. (Shhh sometimes I still get mad when people don't think before they speak...or act. I think it's ok to be sad sometimes, or angry...but keep it in check, ya know?) BUT, MOST people I've met, even with all their curiosities and wonderings marvel at you. That's right. You make people marvel. You make people smile. They see you and smile and laugh. You brighten people's day. And sweetheart, you remind people of their Heavenly Father. They may not realize it in the moment, but you bring goodness, light, and hope into the hearts of all these people -- and those are characteristics of God. Maybe you can't walk very well. Sure you can't say too much, or feed yourself. You currently lack common self-help skills...but one gift that you have that I wish I had...was your innate ability to bring hope and love to the hearts of people whose eyes meet with your yours. You are an angel.

So Sammy, things may be hard sometimes, and you may not understand everything, but understand that you are amazing and extremely, extremely loved. You're my little baby, forever. You're my sunshine.

I love you,
Mom