The Answer

Hey, what were YOU doing one year ago today?

Me? Oh, I was just having a panic attack.

It was the night before my kid’s surgery and I thought for sure the worry would cause me to puke. While excited about the “after”, a year ago today, all I could think about was the “during”. And that scared me more than words can describe. I was more terrified about Ellie’s SDR surgery than at any time during her NICU stay. Because I hadn’t yet fallen in love with Ellie during that first month of her life. I loved her, yes, but there’s a big difference between loving and BEING IN love.

But, by the afternoon of Ellie’s surgery last year, we knew that she would be okay. The “danger” was over, and she had woken up from her surgical sleep. She wasn’t going to die on the operating table. She wasn’t going to be administered the wrong amount of anesthesia. She wouldn’t suffer a stroke as she woke from her medically-induced sleep. A pair of scissors wouldn’t be left in her back. She was okay.

And we could focus on the recovery, rehab and results.

The real question today is, “One year later, are you satisfied with the results of the SDR? Are you glad you went through with it?”

I have two different answers for two different blogs.

I will post one answer on “Ellie’s Footsteps”, the blog that EVERYONE reads; the blog that’s solely about Ellie; the blog that is relatively happy and surface.

But, on THIS blog, MY blog, MY heart-song, I will be more real.

I do not regret our decision to have Ellie undergo the SDR procedure. I really think that her spasticity (muscle tightness) would be much worse today had the surgery not been performed. We have seen an improvement in a lot of areas (for more details, read Ellie’s Footsteps in the next couple of days….when I get a chance to type my thoughts onto cyber-paper!). Though the week in the hospital was pretty brutal and my heart nearly broke to see her in pain, I think it was worth it overall. I’d do it again.

Where I struggle, however, is answering THIS question:

Were the results of the SDR what you thought or hoped they would be?

Sigh.

I worked feverishly to gel my heart and my head so that my expectations of Ellie post-SDR would be realistic. I told myself over and over again that it would be okay if the “only” outcome of the surgery was reduced spasticity. I tried earnestly to convince myself that it wouldn’t matter if she wasn’t walking with canes by the time we celebrated the “one year surgery anniversary”.

But, deep down, I think I wanted more.

Oh, I hate admitting this, because I don’t want anyone to think that I’m disappointed in Ellie. I desperately want to stay clear of undermining her incredible courage and hard work.

But…

I wanted her to be walking with canes. Everywhere. Easily.

I wanted her to be the miracle.

I wanted her to stand unaided in Dr. Steinbok’s office during our one year follow-up appointment.

I wanted Dr. Steinbok’s face to light up and his jaw drop.

I wanted to be the teary-eyed mom who says, “Thank you for changing our lives!”

I wanted to stay in our house. Because we didn’t have to think about wheelchair or walker accessibility. Just re-do the kitchen and put in hard wood floors. And get a flat screen TV for the bedroom. That’s all.

I didn’t quite get what I wanted. And that makes my heart a bit sad.

I got A.LOT. But, not everything. It’s like winning silver in a hockey tournament. Even though you win a medal, and you’re better than 99% of the other teams in the tourney, you still feel empty because you lost the gold medal game. I wanted the results of the SDR surgery to be gold, not silver.

Of course I realize that it’s “only” been a year since the operation, and Ellie’s improvements will certainly continue for a long time yet. I also know that Ellie can and will live a very full life in a wheelchair or walker. My heart has become surprisingly okay with that.

But, it’s still not what I WANT.

Our one-year follow-up with Dr. Steinbok is scheduled for February 21st. It’ll be interesting to hear his thoughts. I have a feeling that he’ll ask me some of these questions, and I’ve yet to determine how I’ll answer them. Or, maybe he’s dealt enough with parents whose expectations are unrealistic that he won’t even ask about my surgical satisfaction!

Despite some heart-disappointment, though, I DO know this: We could not have done more for Ellie this year. I have no regrets about the amount of therapy she’s received over the past 12 months. I don’t ever question our decision to go down to Florida. There is not a regrettable penny that was spent on rehab. And that makes me feel good.

Really, it all comes down to this; the most important part of this entire post:

I am completely convinced that Ellie has worked as hard as is humanly possible. Sometimes I actually wonder if she goes beyond human strength. She went to therapy for FOUR.HOURS.PER.DAY. for nearly half-a-year. Who does that?! My girl, that’s who! She has not disappointed me. Not once. I am so proud of her, I can hardly stand it.

I suppose it’s BECAUSE of her hard work, BECAUSE of her conquering spirit, BECAUSE of how in-love I am with her, that I had big dreams for this surgery. I wanted more for HER.

And there’s my heart. Again.

I feel like it's been a while since I've posted a pic on this blog, so I'm plugging this one in!  Oh, she *is* my heart.  Here she is, at therapy, playing Uno.  Sweetness.

The GOOD Stuff!

Ah, it's time to blog again!  You all thought I'd forget to pop in this week, didn't you?  But, no!  I'm squeaking in with my weekly post, bwa ha ha!  Take THAT, New Year's Resolution Devil!

I was skimming over my recent posts and realized that I've been Negative Nancy lately.  Haven't I?  While "being real" is what I'm about, I also realize that sometimes that downer-posts can get old.  And, really, there are a lot of great things going on in my life right now. 

So, let's "talk" about those things today, shall we?

I lurve my job.  Toward the end of Christmas break, I was counting the hours until I could return to work (though, admittedly, the contempt I started feeling towards all FOUR of Ellie's annoying Zhu Zhu pets contributed to my "get me out of this house!" feeling).  I love my job so much, in fact, that I'm taking the steps to keep advancing in both knowledge and position.  Oh yes.  I will (if all goes according to plan and the admissions committee likes me) be a Masters of Library Science grad school student in the fall.  I'm excited and nervous in the same breath!  I plan on still working full-time and taking one course per semester via distance ed.  So, the ole plate will continue to be full.  But, I think I can do it.  And I think I'll really enjoy it.  And, hey, Richard's a pretty decent writer, so if push comes to shove, he can fire off a research paper or two for me.

Ellie is cute.  She's starting to tell stories and SING stories and play games.  She's cute AND fun.  Cute, fun AND funny.  I like being around her.  I like listening to her make up new card games, which include rules that allow her to win every round.  I like watching her play "pretend school", where she's the teacher and Elmo and Cookie Monster are her students.  Her language has really taken off in the last year and she can take part in pretty interesting conversations.  I am so very thankful for her verbal abilities.  I know that so many of my fellow CP moms would give anything to hear their child speak.  I never take it for granted.

We put our house up for sale this weekend and we had two showings yesterday!  I don't know if anything will come out of them, but it's a good start.  I feel surprisingly calm about house-selling.  It's those darn blueprints for the new house that are causing me all the stress.  BUT, I am thankful that I feel at ease about selling our current house and am hopeful that someone will make an offer soon.  It *is* a bit weird, though, to know that strangers are going through your house, opening your closets.  I had a slight panic attack yesterday when I realized that I had left 2 of my bras hanging in the bathroom (they were drying on the towel rack).  THANKFULLY, I remembered before the showing.  Can you imagine?!  Especially in this small town, because half the people who will see our house are either relatives or acquaintences.  HA!

There are many, many more good things goin' on in my life right now, but those highlights will have to suffice.  Because, oh Evil New Year's Resolutions Devil, I have to get on the treadmill now.  I've got a marathon to run in December...

Tiny Bubbles

(Bangs head on table.)

Why? Why? Why?

Why do I keep doing this to myself? By now, I should know that living in a flowery bubble is so much better for my heart. Don’t break the bubble. Don’t venture outside the protective shell. And, certainly, CERTAINLY, stay away from people who carry pins.

You know, like those scary, pin-wielding kindergarteners.

Pop, pop, pop.

EVERY TIME.

I walk into Ellie’s classroom with determination and zeal, ready to conquer. I pray that I will see Ellie catching up to the other kids. I rally my heart, convinced that I’ll be able to handle it this go ‘round.

I lasted about five minutes today. Then, I began fighting the battle against the tears forming in the eyes of my soul.

Every kid was writing their name on the top of the worksheet. Legibly. Every kid was reading the word “the”. Easily. Every kid was counting by tens. Effortlessly. Every kid was cutting out their shapes. Painlessly.

Every kid except mine, that is.

Did Ellie notice that she was the only one not completing the task? I don’t think so. Was Ellie happy tracing the letter-that-she-can’t-yet-recognize in her macaroni? Totally. Why, then, did *I* notice? And, tell me, why wasn’t *I* happy? It doesn’t make any sense, because Ellie’s happiness is always my top priority.

I was in Ellie’s class today because the vision therapist was coming to observe her for the first time. Of course, when one therapist comes, the whole team follows. It’s FANTASTIC that they communicate and that they’re all pulling together for Ellie’s success. But, at one point this afternoon, I looked at the scene in the kindergarten classroom and sighed.

Surrounding Ellie were SIX adults—the EA, the occupational therapist, the speech therapist, the vision therapist, the teacher and the mom. The other kids were seated at their desks, working on their writing skills while my daughter was surrounded by a special needs entourage.

Pop, pop, pop.

Another mom was helping out in the classroom. She noticed that Ellie was starting to get impatient, listening to all the “big people” talk about her. The mom, in a gracious effort, snuck into the circle and gave Ellie a box filled with Mr. Potato Head parts.

My first reaction to this gesture? I wanted to punch the other mom in the face.

Don’t take pity on me! Don’t be so condescending as to think you can shove a box of toys in front of my kid and hide your sympathy! Don’t mask the fact that you look at me and think, “Thank God MY daughter isn’t like THAT!” Don’t try to be friends with me! Don’t try to talk to me! Don’t say that you understand! You DON'T understand! I didn't want it this way! This wasn't the plan! I wanted to be YOU!

Of course, I smiled at the other mom and mouthed “thank you”, while my heart was screaming insults. Completely unwarranted insults.

I hate going to Ellie’s class. There, I said it.

What kind of mom feels that way? And, more importantly, what do I do about it?

Do I force myself to continue my monthly classroom volunteering stint? Or is it okay for me to come up with some sort of excuse that will get me out of it? Do I need to suck it up, because sooner or later, Ellie will pick up on my feelings (which is my nightmare)? Will Ellie think that I'm disappointed in HER?

Is my pretty little bubble unhealthy?

Sigh. It’s been a rough day. Thankfully, tomorrow is Conductive Education day. A day when every kid in Ellie’s class uses a walker. A day when the entourage encapsulates every student. A good day, smack-dab in the middle of the bubble.

Realty Reality

Living rooms.  Bedrooms. Bathrooms.  Kitchens.  Floor plans.  Square feet.

My head is swimming with house stuff.  Thankfully, that’s a figurative statement, because the LAST thing I need right now is brain matter on my clean walls.

We are selling our house AND  building a new house.

“That’s so exciting!” I’ve heard people say.

You’d think so.  But, I don’t feel that way at all.  Instead, I feel overwhelmed and even a bit sad.  And, I’m trying to figure out why.  Normally, I would dance gleefully in the studio of anticipation and planning.  That’s what I do.  I plan.  I dream.  I figure. 

But, my heart is singing monotone.

First, it’s a lot of work.  For someone who tries to avoid physical labor as much as possible, this is a definite down-side.  We’ve lived in our current house for 4 years and it’s embarrassing how much stuff we’ve acquired in that time.  I’m not even a pack rat!  We have one kid, but you’d think we were the Duggars by the amount of toys we’ve got strewn around the house.

Organizing all our STUFF makes me feel materialistically gluttonous.  Honestly, it gives me nausea.  So much money wasted on crap. 

Second, I’m anxious.  I want our house to sell for a decent price.  I want it to sell fast, yet I’m also nervous about the interim.  I kinda doubt that the buyer will give us a 7-month closing date.  So, we’ll have to find temporary housing, and that’s always a bit of a challenge in a small town and when you require a place without stairs.  BUT.   We’ve been in this exact spot before, and it worked out beautifully.  Experience, in this case, is comfort.

Third, coming up with the perfect floorplan for the new house is completely overwhelming.  I thought this would be the fun part.  But, it’s a thief of sleep and sanity.  I feel so indecisive.  I can’t wait till we have that final blue print.  Cuz, you know, then I get to worry about picking out all the “inside stuff”….

Fourth, and probably the biggest joy-stealer, is contemplating on the reason WHY we’re doing all of this.  We need a wheelchair accessible house.  Not because Richard and I are getting old.  Not because Grandma is moving in with us.  But, because our 5-year-old daughter can’t walk.  Sigh.

I’ve known for a while now that this day would come.  It’s not like I’ve had some sort of pipe dream that Ellie would be able to navigate stairs by the time she hit school.  But, every time these moments arrive, even if expected, they hurt.  I didn’t want it this way.  I didn’t want it to be this way for ELLIE.

It’s difficult for me to not backspace this post because I realize that my complaints are completely hollow.  We are beyond blessed to have the means to build an accessible house for Ellie.  So many parents of physically challenged kids can’t even entertain this option.  I know that.  I so know that.

And I am very grateful for this opportunity.

But, man, I’d take a 500 square foot fourth-floor walk-up apartment in a second if it meant that Ellie could navigate those stairs.

And, sometimes, I just need to blog-vent.  And then move on.

The thing that excites me most about the new house is Ellie’s bathroom.  Oh, I can hardly wait to start working on complete bathroom independence; something we can’t do until we have a restroom that’s big enough for her to navigate in/out of with her walker. 

And, a fridge with an ice water tap.  That excites me too.  HA!

I'll leave you with a picture.  It's mostly unrelated to this post, but it's been a while since I've posted a pic.  You can, however, see the outside of our current house.  Anyone want to buy it?  We'll even throw in the Bama flag if you want!