12.22.2012

Merry Christmas to US!

I have been giddy these last few days.  I've also been weepy - in great part due to the shootings in CT and my own sense of gratitude for what I have and an ache for what so many have lost.

(I've typed and retyped this post several times.  It's long - I apologize.
It also contains a lot of videos.  A lot.  So many that perhaps you'll only watch one (or two) (the last two!)  I can't help myself - they just convey it the best.
Also, Ellie's therapists & I have searched youtube often over the past few years for ideas on how to help her learn to accomplish various tasks.  I've put these on youtube in case there is another mom or therapist looking for help.  I realize that most of them will be really boring for everyone else.)

I've been thinking a lot about miracles recently.
Actually, I've been thinking a lot about miracles since 2007.
I wonder, sometimes, when people look at our family, do they see answered prayers?  Do they see miracles?
I think many do see miracles - though maybe it is not as most people would define "miracle."
Most people likely would not agree that someone born missing hands and feet is a "miracle."
However, I think all would agree that a child born missing hands and feet who runs?  Definitely a miracle.
A child born an amputee who embraces life and laughs and has incredible joy?  A miracle.
I've read that a miracle is defined as something only God can do.  A miracle has a divine aspect to it.
Only God could reach down to earth in the form of a baby.  
Only God could save His people from ourselves.

In 2010, I was told by a medical student that "Ellie might not walk but there's no reason to believe she won't still have a quality of life."
 My response was quick and sure, "We do not define 'quality of life' by one's mobility."
That young med student stood there quietly.
Perhaps he thought I was some crazed hormonal new mom in denial.
What he couldn't possibly know is that I had already decorated Ellie's future wheelchair in my mind.  (It's pink.)
He didn't know that we have friends with children in wheelchairs & they are living life to the fullest.
I don't define quality of life based on whether or not one can walk.
For the most part, our doctors and therapists have all believed Ellie would walk.  They've encouraged me on hard days.  They've supported my girl and cheered for her and pushed her to her limits.
No one knows where Ellie will go.  No one can really predict how far she will make it.
It's quite possible she may need a wheelchair at some point to help with uneven surfaces or long distances or safety issues.

Last spring, I was asked what made Ellie a miracle in a live television interview.
I think I froze up.
 I suppose, with Will, it is easy to spot the miracle as one watches him run without feet or grab a toy without fingers.
But Ellie has hands and feet.
I began to consider my answer and I've thought about that a lot since the spring.
What does make Ellie a miracle?
My gut reaction is that she is a miracle because we feared she would not survive pregnancy.  She gave us so many scares then.
Perhaps she is a miracle because she is not attached to wires in a children's hospital - as I once prepared my heart for her to be medically fragile.
She's quite healthy, in fact.
Perhaps she is a miracle because, honestly, all of her doctors have been amazed at how far she has come. Her therapists have told me that it is so unusual to see a child with arthrogryposis who can do many of the things she can do.  She doesn't fit the "mold."
Perhaps it is a miracle that she can raise her arms up 180 degrees - a difficult feat for someone with dislocated shoulders.
Perhaps it is a miracle that she can now go into a tall kneel on her knees- something that caused her agonizing pain last summer, and that must be hard with a hip that is out.
Others have suggested that the miracle lies in her spirit - she is truly happy most of the time.  She rarely whines.  Though she struggles to keep up with her peers she rarely fusses.  When her little body has been trapped in casts or splints, she finds joy.
But do all of those things constitute a "miracle?"  

But here's the thing. 
Twice, I've sat in hospital rooms with babies who won't be celebrating Christmas this year.  
These babies were beautiful and loved and wanted desperately.  They were prayed for by many.  
They are no less fearfully and wonderfully made than each of my children or any other child on this planet.
Tonight, I dropped a meal off at Hospice - for a family I don't know at all - because their infant is there and they aren't from here and maybe a hot, homemade meal will help them just as so many have served us.  
Their child is fearfully and wonderfully made.
I suppose I've struggled as I've realized that too often, I was defining "miracle" by human terms.  Perhaps I was leaving out the divine aspect - that a miracle may not always look like a miracle, and sometimes in the midst of the heartache, we can't see the little miracles - the divine touch in our lives.

I began to think about miracles in the Bible.
I instantly thought of the manger as I rocked Ellie and sang "Away in the Manger" for the 14,752nd time.
(She insist on a wording change- "little" becomes "baby.")
At the time, no one expected the Savior to come as a baby.  No one imagined a King born to poor,  young parents.
He didn't look like a miracle.
I began to think about how miracles are always gifts.
The Christ child born to us was a gift of redemption and hope.
Every miracle performed by God was a gift - sometimes in answer to prayers, sometimes in response to faith, sometimes in response to a flicker of hope, but always, always a gift.
Biblical miracles always resulted in gratitude on the part of the receiver and glory to the Giver.

We got our Christmas miracles last week.
By far, this is the best gift I could have been given.
I have prayed and prayed and prayed for this day.
At one point, I never imagined bringing home my baby, much less seeing her walk.
Last week, Ellie accomplished three of her therapy goals in one day!!!

First, I let her push her own little cart at the grocery store and for the first time ever, she did it!
Granted, it took us 45 minutes to get down two aisles!
Thankfully, the other shoppers didn't seem to mind our little therapy session or my tears and squeals of delight.
This is part of our goal for community access- that Ellie would be able to independently move around her community and places she frequents. (parks, schools, church, store, etc.)
For stability out in public, she is also now able to walk with just holding one of my hands!  This has been a huge relief for my back!



Next, while I was unloading those groceries (lots of baking to do around here) Ellie sat up by herself!!!
This is HUGE!
She sat up independently for the first time last May - at 21 months old.
We have been working hard on this task since she came out of her spica cast at 9 months old.
She is now 28 months old.
Between May and December - she literally sat up independently 7 times.  
Until last Thursday.  
Suddenly something clicked and she just kept sitting up repeatedly and it was amazing!
It's hard work for her (as the video shows) - and takes her a lot of energy- but she is doing it!!!
This has changed my life.  I no longer have to help her up when she falls down while playing!
For months I've told her therapists I just want to lose count of how many times she had sat up.  I wanted it to be common place.
Guess what?
I've lost count!  I have no idea what number she is at because she is doing it daily!
Let me be the first to say, however, that commonplace will never mean taking it for granted.
I'm so so grateful.




Then, before lunchtime, she accomplished goal #3!  She walked from one room of our house to another independently!
This meant changing flooring surface types and crossing thresholds - a big deal!
It also meant learning to use objects and furniture to go room to room.
I was beside myself with happiness! I texted my mom and husband.  I called a friend who is a pt.  I cried and cried.  I texted our pt and told her we had big surprises for our next session!
So FUN!

Look at her go - crossing more thresholds and even using the wall for assistance!

How Ellie pulls up all by herself (bending those knees like this is tough for her but she does it!!)



For the record, she is officially (as of tonight) walking all over our house!  She just pulls up on furniture and takes off!  She is even turning corners! AMAZING!
For the first time ever, she chased her big brother while walking!!!
Then, she pushed her baby stroller all by herself!!!
(Have I mentioned that I am giddy?!)

Finally, yesterday, we went to see some friends who know first hand how hard this girl has worked.
We stopped by the Children's Miracle Network offices where Ellie showed off walking to Mrs. Robin.


And then we headed to Dr. Rick's office.
First, I begged the receptionist to let us see the special needs nurse for two seconds...
she and several nurses came up front and Ellie showed off her skills.
My favorite part is 30 seconds in - they are both crying!
So was I - something so fun about celebrating with others who just know.  They know how hard this road has been.  They know the tears and the hope and prayers.

They insisted we stay for Dr. Rick so as soon as he came out of a patient's room.
(Dr. Rick whipped out his phone and videoed her - this is from his phone and I just love his exclamations!)

Merry Christmas to us!  
Praise the Lord - we are so thankful!!!


As I've pondered miracles this week and the depth of joy and gratitude I feel at hope fulfilled, I've become so thankful for a God who delights in us.  I'm so thankful for a God who created us so differently and who gives me such incredible opportunities to parent these precious children.  What the rest of the world calls "normal," I get to call "miracle."
My girl is walking.


8 thoughts:

Kristin said...

Wow amazing! Your Joy shines through this post.

I see my miracle every June when my now 9 year old gets up on stage for her dance school's big recital.

She has PDD-NOS and it is a miracle.

Brooke said...

Crying tears of happiness for you guys! God is good!

Mrs. Jenk said...

Crying with you- so wonderful to see her and your work pay off!

Christie Minich said...

Oh I am so happy for you and for Ellie! She is the sweetest little girl! :)
I often wonder how far Erika could have progressed had she had care before the age of 8.
In Ukraine, all they saw was defect.
Here, we see Precious Daughter, cherished one, MIRACLE.
It is a miracle she survived. It is a miracle she came into our lives. And she is a miracle in that she is proceeding in her education and has every plan for college, marriage, family, putting the Lord first in her life.

I look at our son Tim, whom I have mentioned often. He is a miracle.... went from declared "brain dead", said he would never walk, to a walking, talking, teaching, married father of 3.

I am thankful for the miracles in our lives. Our children help us to remember to take time to smell the roses. :)
Merry Christmas!

My name is Annette said...

ELLIE!!!!!!!!!!! Great job!!!!
This touched my heart so much!!! Merry Christmas mama! :-)

lisa w. said...

Love LOVE LOVE this post!
Yeah Ellie!!!

~Stevie~ said...

Beautiful!

Cheryl Linder said...

Crying at this post! With the busy holiday season, I haven't checked in for a while! I saw your New Years post and could tell that Ellie had come a long way in a little while! I KNEW she would do it! She has too much spunk not to! She has always, praise GOd, defied the odds!
LOVE YOU! MERRY CHRISTMAS AND HAPPY NEW YEAR!
Cheryl

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