All I Wanted for Christmas...

HOPE!

This morning, in Ellie's therapy appointments,

I was given the best Christmas gift...

the gift of hope...

Ellie began to walk using her gait trainer for assistance!

She needed the therapist to help her move the trainer  (she's not strong enough yet) but she was taking the steps all by herself!

My Girl Began To Walk!

She moved her legs in the necessary repetitive motion & at the end of the session, she even began to bend her right knee!

How grateful we are for doctors and therapists who have worked so hard to get us to this point and who are committed to our little girl and our family.

How full of gratitude I am for a God that would see fit to let this happen just days before Christmas - in this season of hope to give me a glimpse of what is coming -

that my girl will walk someday.

And how blessed are we?

Will took his first independent steps just a few weeks before Christmas in 2008.  

Two children - both with differences and yet both have surpassed expectations and overcome (or are overcoming) challenges...

and both have surprised us with hope.

I don't take these little steps for granted.  This is huge!

Go my Ellie girl, Go!

How fun to celebrate these precious steps with an audience of therapists cheering for her.

And then to go straight to Daddy's office to show off.

(though it was hard on the cobbly surface)

There are two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle.

-Albert Einstein

We are blessed and are celebrating our precious miracles.

(& If I run into you in public, don't be surprised if I whip out a somewhat gaudily decorated gait trainer complete with lights & make you watch my girl show off her new skills!  And be sure to clap! :))

Miracle Children Lighting the Christmas Tree

Oh my goodness. 

We have had a very fun night!

We darted through traffic & around blockades & possibly drove the wrong way on a one way street and finally made it to the parking lot to board our trailer for the Christmas parade.

Will was so excited to see that the Grinch would be walking alongside our trailer carrying a sign with his name on it!

(Later, he had some jealousy because "the kids are calling out the Grinch's name instead of mine!")  

And because Will & Ellie were riding in the parade, we got to hang out with the various other people in the parade, including this guy & his wife!

Will went ahead and filled him in on his list.

Ellie was terrified. 

By the way, Will devised a plan during the evening to set up our own North Pole at home & have me play the role of Mrs. Claus while he plays Santa.  Love his imagination.

The Clauses were riding in an old fashioned firetruck which Will climbed up into.

Ellie & Robin - the local CMN director

petting the minature horses/donkeys reindeer

No, you're not seeing double

At last the parade was on its way!

Ya'll.  My kids are both such performers!

Will loved waving & yelling "ho ho ho" & "Merry Christmas!"

Ellie loved clapping and waving at her audience.

When we got to the square, we jumped out of the trailer and headed to the giant Christmas tree.

They had a little stage set up and our favorite pediatrician ever, Dr. Rick, joined us.

(Thanks, Dr. Rick for coming - even though tonight was your anniversary!)

By this point, Ellie had had it and needed to be down & moving.  We let her scoot a few inches but kept moving her back.  Dr. Rick noted that we were making him nervous.

Look!  A Will shirt in the crowd! :)

After some singing, some dancing, a speech by the mayor, a prayer, & Will & Ellie's Miracle Story being read out loud, it was time to light the tree!

Will flipped the switch & 

WOW!

What a fun night!

And two tired miracle kiddos!

Will & his buddy Luke

We saw lots of friends and family lining the streets during the parade!  Thanks for coming and supporting our kids.

More on the Children's Miracle Network coming soon.  (It's way more than I ever imagined!)  

Now - it's off to Run the Rock & Rock the Cause with 

Team Where There's a WILL, There's a Way!

(Yes.  We're going to be exhausted (or more so than usual) by Sunday night.)

(And yes.  Will & Ellie are having a very fun week being celebrated for who they are and how they have overcome so many challenges.  They are loving all this attention!)

On Being Her legs

I desperately want her to walk.


It was the first time I had admitted this out loud.  I've always heard about moms who never doubt their child will walk.  I'm not one of them.  Before she was born and when she was a newborn, I was too afraid to be that kind of mom.  I was terrified of the thought of her thinking I wouldn't accept her or love her as much if she didn't walk.  I don't believe that the quality of life is defined by the ability to walk.  And I didn't want her to ever read somewhere or hear that I insisted she walk.  In fact, I even began to plan how I could pink out a wheelchair if doctors told me that would be best for her.  It's not that I didn't believe she could walk... I just wanted to embrace my daughter regardless of whether or not she walked. And my love for her was not conditional upon her mobility.  So I was cautious for a long time about mobility.

It's a fine line for us moms.  We have to carefully balance as we push our children to achieve and yet accept them just as they are.

It's a daily struggle for me as I push push push in therapy... and yet want her to feel accepted just as she is.  And I push push push Will to be successful in various tasks...while also wanting him to know it is okay to ask for help and I accept him just as he is.

I'll never forget the day her therapist in Dallas and her doctor told me they believed she would walk.

So I've fought and struggled and pushed and worn us all out with therapies.  Because I have every reason to believe that she will walk.  (And I'm still planning on pinking out a walker. :)

Recently, she began hydratherapy.  I want her to do a few sessions so that I can learn it and implement it in the water with her this winter.  Both kids love to swim so I thought we might join an indoor pool for a few months.

But for some reason, it bothered me watching her in the water.  It seemed like I was turning a once peaceful, playful place into just another place to work.

After that, I hurriedly took Will to preschool where I spent some time checking his letter journal and watching him work on his letters so that I could show his Dallas OT a few days later as we worked to creatively figure out ways to help him be more successful in school.  He is really struggling with writing and coloring and after watching him, I see why.  It's a challenge for him in so many ways and I so want him to be successful.

I left his school feeling wiped out already from the morning and not knowing how best to help each of my children.  I felt overwhelmed and exhausted and it was only 10am.

I called one of my best friends and burst into tears saying, "I desperately want her to walk."

I just had never admitted it outloud before.

But I do.

Sometimes I forget she is technically a toddler.  Her crib mattress is still at the highest setting since she is not independently getting into a sit yet.  Yet.

She is not pulling up or cruising. Yet.

She is scooting - on certain surfaces.  And it is glorious.  I cheer loudly.

And she can roll like a little maniac.  I love her wild rolling.

At nearly 15 months (tomorrow!) I get asked a lot by strangers about her walking.  And sometimes, this is just a painful reminder that she is not yet (yet!) walking.  Usually, I can just reply to the random person in the grocery store or the post office that while she is not walking yet, she is a rolling fiend and she is on her timeline.  They look at me quizzically.  So I then distract them by focusing on them... even though I confess that I really don't want to hear all about how fast someone's 10 month old grandchild is running or how clearly advanced they are because they walked early... It's just that it's a common question when someone finds out a baby is over a year old.  They want to know about walking.  Or crawling.  And this reminds me that she is, in fact, a toddler.

This morning, not twenty minutes ago, I was helping to set up at Will's preschool for a Thanksgiving feast.  I sat Ellie down in a corner of the auditorium while I cut pies and set tables.  I sat down my fifteen month old.  And I knew she would be fine - she would, in fact, just sit right where I placed her.  I wasn't concerned that she might crawl or walk away.  A woman came up to me and commented on Ellie's good behavior... and then followed it with "it that were our kids, they would be running all over the place.  And she's just sitting there!"  She meant it as a compliment.  I think.  But it felt like a painful stab - a reminder that my toddler isn't toddling.  That she isn't pulling up on tables and pulling things off.  She isn't crawling around.  She isn't running around.  And after a morning of therapy, frankly, I wish sometimes that she were able to just take off.  To be honest, this wasn't the first time this particular person has made an insensitive comment.  And I've never known how to respond.  I don't want to embarrass her but yet I also wish I knew how to educate her.  I realize she may have no idea about Ellie's condition - but obviously Ellie is wearing splints... and she looks like a toddler.  Or maybe she just thinks I have super obedient children and I told her to "stay." :)  Regardless, it was another painful reminder.

Recently, she's also had some close calls while doing therapy with me.  One of the things we are really pushing her on is her reflexes.  It is not instinctive  for her to catch herself when falling.  So a huge huge risk for Ellie is falls and injuries related to falling.  Her arms don't stop her from a potential head injury.  Twice in the last week she has nearly fallen and my heart nearly stops as I watch her just free fall with her hands no where near protecting her head.  And so while I long for her to walk, I fear it too.  I don't worry about falls with her scooting and rolling.

I've struggled recently as I realize that she is a toddler even if she is not toddling.  Yet she has been stuck in sunday school classes or Bible study classes with infants.  So, I asked recently to have her put with her age group and volunteered to assist with her so that she can be around her peers even if she is not developmentally performing like them. So far, this week, she's done great in both situations while being surrounded by her peers.  And she hasn't been toppled yet by a toddler.

I struggle to treat her like a toddler instead of a baby.  I struggle to find toys that are age appropriate for her yet that she can do independently.  I struggle to know what I should expect of her.

I struggle because sometimes I just want to snuggle her and cuddle with her and sometimes I slack and don't do her therapy as much as I should during the day.  And then I tell myself that I will have to look her in the eyes and confess this someday to her and the guilt creeps in.

Sometimes I just want to enjoy her instead of feeling so rushed to get to therapies  or taping or tired from doing them.

I've heard moms say that life is over when their baby learns to walk.  I've heard that apparently a walker gets into lots of trouble.  I've heard that moms get so tired of chasing a toddler around.

I love having a baby in my arms.

But.  I yearn for the day she can walk away from me at a park.  I yearn for the day she can toddle around with her friends while we play outside.  I yearn for her to be able to chase her big brother.  I long to be able to call her and have her come to my arms.

Maybe that's one of the blessings in being a mom of a child who has some developmental delays.  We don't dread any milestones.  We celebrate them.  We don't feel like life as we know it is over... we long for the day our child walks or talks or reaches a goal we've worked on.

And somehow, by the grace of God, we learn to relish the moments and the work and the challenges it takes to get there.  We learn to find joy in the scooting and in the privilege of being given longer to just hold the toddler as if she were still an infant.

We know it is an honor to be their legs until they can do it themselves.

So for now, though I long for her to toddle, I'll hold my girl and praise her rolling and scooting and I'll be her legs for her so she can play with others.

And someday.  Someday she will walk.  And I'll cheer and cry just like I did for him and then I'll throw a party.

Because that's what we moms who serve our kids as their legs do.

And because by the grace of God, she too will someday be a walking miracle.

I can't wait.  Except that I am waiting.  And I'm learning to find the joy in the wait.  Because for now, she's in my arms.  And I love having her here.

MIracles this Week

Last week, with no prompting and out of nowhere, Ellie went from a sit to a stand while in physical therapy!

THIS IS HUGE!

The PTA was shocked.

I was shocked and crying and grabbing my camera phone.

Will was wondering what the big deal was.

She has continued to do it some this week from sitting on little benches.  So exciting!  She needs support once she is up but the fact that she seems to understand the mechanics of what it takes to stand and the fact that she is apparently motivated is awesome.

 I mentioned to my mom that sometimes I struggle with sharing milestones with therapists.  (Will's first steps happened with his pt in our sunroom.  That day is forever ingrained in my head - December of 2008 we celebrate the anniversary every year.  IT WAS HUGE!)

But, in her wisdom, my mom reminded me that having a therapist present is good - unlike most people, she knows the hard work that went into each milestone.  And she can verify it is reality instead of me dreaming or fantasizing or wondering if I can believe my eyes.  And she can celebrate with me.

This was a great day.

practicing her stand at home:

And that little boy I asked for your prayers for with his bike.

Just a few hours after posting that request here is what happened:

(the sun had set - but you can hear the audio if you push pause on the music playlist at the bottom of the blog.)

Yep.

He rode a bike.

The child who is just barely four years old.  The child in bilateral lower prosthetics and with hand differences.

The child with a determination and strong willed spirit unlike anyone I've ever known.

The child created by a God who knows my fears and my insecurities and all the what ifs and gives me gifts like this...

he did it.  He did it.

And pretty much every waking moment of sunlight (or partial sunlight) has been spent outside riding his bike!

He's figuring out his brakes at last & now can ride pretty far on the long flat street at the bottom of our street!
We actually were able to go on a family walk down the street with him riding beside us!
Little daredevil though loves hills & is so anxious to go down the big hill on our street.  I'm not ready for that!

So fun!

I do not take this for granted.  I have so much to be thankful for and to celebrate.

It is the greatest honor of my life to be their mommy.  

 He gives me a front row seat to behold miracles.

And I am thankful.

The Birthday Girl Turns One... All Week Long!

On Ellie's first birthday morning, we did a birthday parade into her room around 8:30 (she slept late for her birthday & I couldn't stand it any longer and had to wake her up!  However, she did wake up during the night and I was able to tell her happy birthday around 1am...)

So...

R, Will, & I paraded into her room with cameras singing happy birthday.  We were supposed to have balloons but somehow I forgot them at the store.

This is how she was sleeping - too precious.

Ellie takes after her daddy in the mornings... bright and happy.

Someone else around here takes after his mama...

The singing continued while we changed her.  She isn't wearing any pajamas because our a/c broke again this week on Monday & wasn't repaired until Thursday!  Thankfully, our ac that controls the bedrooms was working but the rest of the house reached a balmy 91 degrees!  It was rather stifling!  So, Ellie went pj free to try to keep her cool.

For breakfast, I surprised her with a cake pop - her very first taste of chocolate ever & her first taste of cake ever.

This is the look I got in return:

I believe she may have been wondering where her hard boiled egg and yogurt were.

But, not one to be a spoilsport, she gave it a try...

She wasn't too interested in the cake pop for breakfast... but by her dessert cake that night, she was sold!

We escaped the heat both outdoors & indoors with a swim

And while I had planned on making one of her favorite meals - spaghetti & green beans & having a simple dinner & cake as a little family, the house was really, really hot & we were really, really cranky...

so my mom graciously offered her home & offered to cook so that I wouldn't have to raise the temp at all by turning on the stove or oven.

And being my mom, she outdid herself with a fantastic spaghetti dinner and rented a pink tablecloth & had pink roses.  Perfect!

Both Ellie & I felt very loved!

Ellie makes lots of funny faces.  I don't know why she is giving me this look but it seems she may have been mad at me

And then it was time for her first birthday cake!

She was in awe of the flames!

 And we repeatedly interrupted the singing to yell "no touch" as she wanted to experience the flame.

 And bad mama that I am, after we helped her blow them out, I didn't get the candles out quickly enough & she touched the hot wick. 

which led to lots of tears ...

and which were remedied by the taste of delicious cake

You know what I love?

I love watching someone experience life and all it has to offer for the very first time.  The rest of her life, she will eat cake and it won't seem as special as the very first time she tasted icing...

what an honor to be her mommy and bake her a cake & serve her.

And how flattered I am that she loved every last bite of icing.  The cake, she was ambivalent about.  The icing?  Loved it!

Ellie with her Cookie & Lovie

Sharing with mommy

Yum - those fingers never tasted so good!

(look at R's face - he is grossed out... but a mama never refuses a shared bite)

Our little family...

and one very happy, very sugared up ONE year old!

And then she opened a few presents...

with the help of her big brother who had to be frequently reminded that although she will share her new toys with him and he can play too... technically they are HERS!

Her daddy wrote her a precious letter and gave her beautiful pearl earrings in the hopes that she will someday wear them as he walks her down the aisle.

One of his dreams when we learned we were going to have a daughter was to be able to walk her down the aisle... for so long we were so uncertain she would live very long.

We know we have no guarantees... but we are thankful for every day we get and for the hope of a future with her here with us.

And the girl does love jewelry.

By Friday, we had a/c again!  And R's parents, Honey & G-Dad, came to town to celebrate!

Ellie & Will had fun opening more gifts (early b-day gifts for Will - 1 week to go for him!)

Ellie loves baby dolls and is so excited for her first American Girl "Bitty Baby."

I found her one day recently curled up sound asleep with a doll in her arms.

Saturday, the boys (Will, R, & G-Dad) went to the Children's Museum and had a blast while the girls got ready for the party.

I am so thankful to Honey, my mom, & my grandmother who helped make it perfect!

We invited family and neighbors and some close friends to celebrate Ellie's first birthday with us...

 (front of invite above, back of invite below)

(sorry for fuzzy invite images -  my friend Kelly at www.caproncollection.blogspot.com designed the invitations perfectly!

The Birthday Girl awaiting her guests

The table:

Petit Fours - with her monogram, of course

I wanted to create a really nice evening - kind of a "tea party" esque feeling... with delicate finger foods and sparkling pink lemonade and real glasses.  I wanted it to feel feminine and lovely.

I make no claims of being a baker... but I do like to do homemade cakes for my kiddos.  Here is Ellie's butterfly cake:

The drink table - lots of pink lemonade!

Ellie doing her "party tricks" - rolling all over!

The front door with lots of pink, silver butterfly wreaths, & the bubble machine going full force (thanks, LeeAnn!)

The entry table - for party favors I had pink and green jelly beans and peppermint sticks for children and roses for families.  With each rose bouquet, we attached a note thanking people for coming and letting them know a donation to Scottish Rite had been made in their honor.  We wanted to thank everyone (including many of you and our friends and family in West Texas) who have been so supportive and loving and who have truly celebrated Ellie this year and we hope that a donation to Texas Scottish Rite Hospital for Children in the honor of all of you who have had a significant impact in her life will be a more meaningful favor.

We are so thankful and blessed and we realize that your support of our family has often come at a great effort.

Showing Ellie the bubbles

Ellie gave her mama lots of sweet girl hugs

I ordered some beautiful pro cake pops (with "E" on them) & also made some of my own to supplement them.  I tried all week to master how to make them... I finally got the recipe down but I never could get mine to be this pretty!

Ellie & her friend, Ellie

Will was a great host & enjoyed making sure everyone got a cake pop!

I loved singing to our girl!

And she loved another serving of icing!

Ellie gave lots of love to her guests!

Our neighbors & lovely babysitters

I hung a few favorite pictures up from each month of Ellie's life

I used to take birthdays for granted.  I loved them and they were important and a big deal... but they seemed like a natural part of life.  I expected them.

I've learned with my precious kiddos not to expect birthdays.  I've prayed and hoped and for awhile believed I would never have this day... of course, I had planned that we would celebrate monthiversaries,  or maybe even dailyverseries... whatever I got with her I would celebrate.... but I didn't know I would get this - a full year and the hope of more.

I have been overwhelmed this week by gratitude.  My mom recently told me that she has observed that R & I seem to enjoy every minute of our pregnancies and children - I hope this is true... because we are too aware that it is fleeting and it is not guaranteed and we really are so very blessed and thankful.   I have been so thankful to celebrate her entire first year and to be able to share the celebration with some of the many people who have loved us and walked beside us this year.  

So, Happy Birthday to our Ellie Girl & Thank You to those of you who have Prayed and Supported and Loved and Celebrated her with us!