2.28.2013

Scars & Sad



Twas the day before she got her casts off...
& Ellie did pilates beside me!

So so so excited to get casts off!


Ellie got her casts off yesterday.
It was hard.  Really hard.  
She cried most of the way to Dallas - hard to get comfortable in her car seat with those casts on.
We had been told she could have valium to help calm her down - Ellie is generally a nervous wreck in all medical situations lately (understandably.  She still talks daily about the anesthesia mask scaring her.)    The first person who popped into our little room happened to be a child life specialist and before she could utter a word, I said, "Valium."  I wanted to get it going in Ellie's system before the cast removal began.
But when her surgeon came in, he felt like it wouldn't be a good idea so there were no drugs for Ellie.
Sweet baby girl.  Sweet Jesus, have mercy on us.
It was hard.
She did okay through the removal of her arm casts.  
But then the saw came out.  And she lost it.  She was screaming and terrified.  She clung to me and her child life specialist for dear life.  She cried and repeatedly said "All done!"  I tried singing and we tried an ipad movie but she was not having any kind of distraction.  I hated it because even though I knew she wasn't in any danger, I couldn't seem to convince her of that - & granted, there was a saw going down her legs - not mine.
When the casts came off and I saw the many incision sites for the first time and the stitches and the scars, my eyes filled up.
But I held it together because I am vain and stupid and I guess wanted to seem like I'm okay and I have this all together in front of her doctors and nurses.
Like this is just what I do so no big deal.
Except sometimes it is a big deal and it is hard watching my kids hurt and battle fear.
So I smiled and tried to pay attention to cast care and scar care routines and new instructions.
Then, we headed downstairs in the hospital to receive her new AFOs.  
They have purple straps - I don't like purple.
Ellie's favorite color is pink.
Silly of me, I know, but that bothered me that she couldn't have pink.  
Then, he brought out the shoes.
I get that this is a first world problem.
I get that there are children dying and suffering and in pain and hungry and their mamas are helpless.
But spring and summer are coming and I wish there were some cute, trendy looking sandals that would fit over my girl's AFOs.  And I wish that she didn't have to wear socks and AFOs in the heat of the summer.  
I'm so thankful she can walk (or could - she has to relearn now).  I am.
I am thankful for the AFOs that make walking possible for her.  I am.  I so am.
But I kind of wish I could throw them against the wall too.  I wish I had cute shoe options for her to go with her cute smocked dresses.  I wish that at the pool this summer she could walk to me or stand up to jump - instead of having to sit down because she can only walk with AFOs and AFOs can't go swimming.
I dream of someday seeing her walk into the ocean.
I don't know why the stupid shoes did it to me.  I am not a shoe person.  I have just a few pairs I wear each season and generally, I buy cheap shoes.  I just don't pay attention to shoes.
So why the heck it is bothering me that I don't have options for my daughter baffles me.
But it is.
And I had a good cry about her lack of shoe options and the AFOs covering up her sweet legs all over again yesterday in the car.

And then there are the scars.
Can I just say how happy I am to give her a bath again?!!  Her hair feels so much better now!  The astronaut shampoo served its purpose but her hair feels so silky now after a real bath!
She doesn't like the scar care routine yet so I'm modifying it and putting her in the tub a few times a day to let soapy water get in her scars and help heal her and help dissolve the stitches.
I should count the stitches tomorrow - sweet girl has a lot.  I bet she has around 100.



I tell myself the scars will fade.  I tell myself I can use vitamin E.  I tell myself it doesn't matter that all four of her limbs now have scars on them.
I tell myself they will build character and make her stronger.  I remind us that she is brave.  
I tell myself there are other issues for Ellie - other things that will set her apart from others so obsessing on the scars is silly.
But I authorized these scars.  I choose them because I believe that this is the best way to get her functioning better.
I traded smooth, flawless skin for easier, safer walking.
I'd make the trade again in a heartbeat.
But I'm still so sad.
I don't know if it is because they are so much more numerous than I expected or because some are quite extensive - stretching all the way around her limb or maybe it's simply because she is a girl.
I'm quite certain I'm projecting my own insecurities and fears about middle school mean girls and first crushes and shallow boys and how they may react to her scars or tease her.  I know in my brain that it is wrong of me to assume how kids 10 years from now may or may not treat her based on her scars.
Again, I know it is silly of me.
But my sweet baby girl - each one of her limbs right now is scarred.  Her skin is marked and I allowed that.
Just yesterday, Ellie started singing an Andrew Peterson song repeatedly, 
"Hey Beautiful Girl, Daddy loves you, he loves you. Most beautiful girl, in the whole wide world."
She has continued to sing it all day and it melts my heart. (And her daddy's too.)
Every girl wants to feel beautiful and no guy in the world will make her feel as beautiful as her daddy does.  
Today, she argued with me about being beautiful.  I simply sang the song back to her and she then told me she wasn't beautiful.  She was truly being a defiant 2 year old and saying "no" for the sake of saying no.
But I went straight to my fears that someday she may question her beauty or not believe us when we tell her God looks on the inside or fall prey to what our culture says is beautiful.

I just re read some of this post - I feel so shallow and can not even explain why these scars seem to bother me so much without feeling more shallow.
But I wanted to share that I am struggling.  My kids have not come out of surgeries and casts unmarked.  It's a lot for me to take in, I suppose.
They have also not come out of surgeries instantly more functional.  Though we still believe these surgeries are beneficial in the long run - 
it is hard in the short run.
We are adding in extra therapies starting Monday.
Will still needs help doing some basic tasks.  He is expanding his skills daily but it is hard for him.  He has moments where he totally panics and has major anxiety about what seems to him to be a loss of function (learning how to use new muscles feels funny and is hard!)
Ellie is not walking or pulling up.  In fact, she is back to scooting on her bottom.  Except she knows how to walk and she misses walking!  She wanted to try at the park today and so I held her hands and tried to help her but she seems to have no strength at all to support herself even with my help.  She was very frustrated.
Ellie also needs help with feeding and drinking again.  She is in arm splints and her arms hurt so she is not lifting them up yet to eat or drink independently.
I didn't anticipate this.  I suppose I naively thought when casts came off, life would quickly get back to our normal.
But it is not.  And I'm struggling and hurting as I watch my kids work so hard and feel frustrated and pain.
I'm just so sad the last two days -the scars and the regressions and the dependence and the pain and the hurt and frustrations - it's all so much more than I anticipated.

5 thoughts:

The Bynums said...

Bless your heart and thank you for sharing. As I read through your entire post, I was nodding my head. It all makes perfect sense to me...not shallow, not even in the slightest. Purple AFOs instead of pink, is a big deal to mamas like us, I totally relate. Not being able to pair sweet sandals with pretty dresses...again, a big deal to us. I have been following your blog for some time now, and I just love when you put words to the ways I feel at times. Different scenarios, but similar too. I have been in prayer for you and your littles. Praise God that He defines beauty and not us. Praying for the Lord to meet you in your sadness while continually restoring your confidence in each and every decision regarding your precious, beautiful children.
~Whitney

CYNTHIA ABRAHAMS said...

As a mother, grandmother and breast cancer patient I so understand your concerns for Ellie. A quote I think of often is, Scars remind us where we've been. They don't have to dictate where we're going. You more than anyone will have an impact on Ellie and what she thinks of herself. Love her, focus on other things, sometimes we have to ignore the obvious and she will follow suit.

Christie Minich said...

(((HUGS))))

Our girls and one of our boys also bear those scars. As a word of comfort to you, as we are in the Jr. High mean girl stage....we have run into very little mean girl stuff.
Now it could be that we home school, but that does not mean there are not mean girls in the church or in co op groups, there are.

However, your Ellie girl is so funny and beautiful from the inside out, THAT is what people will see.

And if they don't, it will be their loss.
We have run into those kinds of people too, but they are mostly ADULTS!

About a month ago, Sarah was looking at herself, and she came up and said, "Mama, Did you know there is something wrong with ALL 4 of my limbs?!!!"
The way she said it just cracked me up. :)
"Do ya' think?" LOL

lisa w. said...

Wrapping arms around you, this post is a thousand times REAL. Thanks for being real.
lisa

tami payne said...

As soon as I saw this, I thought of you. I think this little girl has AMC.

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