6.06.2013

a Walking Miracle (AGAIN!)

I have so many posts stored up in my head...
like our trip to the beach (with pictures!  Lots and lots of pictures!)
& my thoughts on people who are parking in handicapped parking places without placards at 5:30am in my exercise class... 
& summer fun (loving our summer so far!)
& heartache as I try to parent a child facing some very real fears and anxieties - and the exhaustion that comes from driving two kids to a children's hospital for a day of appointments and dealing with one's anxiety about being stared at.... only to find ourselves moments later surrounded by elementary age kids ON TOUR of the hospital.  Not ok with me.

But.  I keep getting distracted by rainy days and kids to play with and tickle and read with and books I'm devouring and swimming pools that seem to call our name and a lake nearby.

So those posts will come.  Maybe.  Hopefully.  Eventually.

For now - 
how's this for a WALKING MIRACLE?!?!


Sometimes, I think I am the luckiest mom in the world!  I've now experienced the "walking" milestone twice with each of my kids - once with prosthetics or braces & once for each without medical devices!!!

Also, I know all the hard work that goes into walking - it's not such a simple one foot forward process.  It's balancing and muscles that are underdeveloped and a dislocated hip and 7 surgical procedures (1 hip, each foot 2 times) and tendons and hours and hours and hours of physical therapy and bended knees in prayer and quiet pleas in the dead of night and tears and many falls from a lack of stability and muscles and range of motion.   It's stretching and learning to bend and straighten.
It's 887 days of working and wondering.
It's two years, 9 months and 20 days. 
It's far from simple.  It's far far far from easy.
It's painful actually.

It's exhilarating and overwhelming.

Tonight, after bath yet before we put on her splints, Ellie suddenly exclaimed, "Mama!  I'm walking!"
 MY GIRL WALKED.
BAREFOOT.
She repeatedly went about 8 steps between me and the coffee table.  Later, we tried in her room and she was able to take a few steps on hard wood floors.  



Just about an hour earlier, I had been in tears as I rocked her and kissed her after a particularly bad fall.   While playing a game with Will & I, she had fallen mid -stride and crashed her forehead into her dresser.
She's ok - but my tears fell as we cuddled after.  I dread the day she falls hard enough or at the wrong angle and breaks something or hurts her brain.  I don't really think it is an "if" but more a matter of "when" as far as breaking something.  Ellie falls multiple times a day - probably 6-8x/day.  Of those falls, probably 2-3 are bad.  Every single day.  She is cautious and we have done what we can to give her stability and security - but there is a fine line between security and independence.
I once read about the "dignity of risk."  I need to allow her to experience life & its risks while seeking to give her as much independence (mobility) as possible and somehow keeping her as safe as possible... yet letting her figure out her own limits and capabilities.  With arthrogryposis, falling is a life long issue.  I've heard adults & teens talk about how they still fall frequently and how they try to protect themselves in their falls.  It's just a part of dealing with this particular medical condition.
So - today, after her bad fall, it just kind of hit me.  I realized that someday she is going to break something or gash her head open or worse... and it scares me. 
And then, just an hour later, my girl took a huge risk in walking barefoot.
And I breathed a sigh of relief.  
We're figuring this balance out together, my Ellie & I.

Definitely the most blessed mom in the world.


***side note - because someone is going to comment (hopefully!  I do love a good comment!!) or email me or something... 
for the record, walking 8-10 steps on carpet barefoot does not mean Ellie will soon (or ever) be able to quit wearing splints.  She will likely always need splints.  They offer her stability and security and enable her to wear shoes (therefore more stability & cultural acceptance.)  It was also rather painful for her tonight - I'm guessing because of the lack of stability and inability to hold her feet down flat without splints... like walking on the toes of one foot & the side of the other foot... painful.)  So, just to clarify, this is exciting for us just because it is.  I love seeing my children develop some independence from medical equipment.  I love seeing their confidence explode when they are able to accomplish something new.  I love seeing them walk without assistance.
But I am also really grateful for her splints and what they offer her and just want you to realize that they aren't going anywhere soon.***

But barefoot walking after baths - heck yes!  

So proud of our girl!



5 thoughts:

Goodmom42 said...

Great job, Ellie! Your kids are so adorable and I love reading your blog. You are such a wonderful Mom, so much so that God chose you for these two very special babies. And I would bet that the bond the two of them share will be even stronger due to the challenges they both face. God bless your sweet family.

Christie Minich said...

So precious to see her walking again! And oh those falls. They are so hard.
I'd like to say it gets easier as they get older, but I won't lie.....
Erika falls less as she has gotten used to her prosthetics over the last 6 years. For Erika, who doesn't bend at the hip, when she does fall it is very scary because her arms don't bend and her body doesn't bend. She takes some pretty hard hits. I was tempted a long time ago to make her wear a helmet! But Mike and she both said, "don't worry!"

So I worry quietly. :)

The good news is.... she falls less. When she does, I run to the loud boom where ever it happens and 90% of the time she is laughing at my reaction.

Tough kids.... :)

Liz said...

I love it when she calls out "Daddy, watch this!" So proud!!!

I just love, love, love your blog.

the Sebring's said...

I love reading your blog and hearing about all the wonderful victories for Will and Ellie! You are an awesome mom and your kids are so lucky!

God Bless your sweet family,
Alice Ann

gtown1 said...

Go Ellie Girl! So happy and proud of you...Katie --I love the pure joy in your voice. Love you friend--EJ

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