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Tuesday, January 25, 2011

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?


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.


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.


Sheila said...

Wow! I can't believe it's been a year! I'm so sorry that it didn't fulfill all your dreams. Seems that's the story of our lives, hah? But you're SO right - Miss Ellie's determination is AMAZING! Malayna struggles with a couple hours of therapies (back to back) a week, she'd never tolerate 4 hours per day! And for that, you deserve to be perfectly proud of that sweet girl!

Amy said...

Oh, I got emotional reading this because I totally felt your heart. While Emma is not really a candidate for SDR, I have tried so many other things, hoping to be the incredible success story--the miracle that people talk about. Our latest adventure is in ABR. While, I am glad we have tried it, I am not sure that it has met my expectations for Emma. I was hoping she would be cruising easily on that walker this year. I know what you mean about seeing your child work so hard and wanting it for them. But, if it is any help to you, you can know in your heart that ALL was given this past year. You did above and beyond what most parents would even consider doing or sacrificing. I applaud you all for spend so much time in Florida. God only knows what results Ellie will continue to reap from that experience. I don't believe that all results are spontaneous and timely. Some happen over a year or more. I think intensive therapy is like that. For giving it all you had, you will never have any regrets. That's how I try to look at things. THAT THE BEST WAS GIVEN. We gave it all we had. I think your feelings are perfectly natural and real. I know about wanting that miracle thing--those jaw dropping looks from doctors, etc. Oh how I know!!

Fortunately though, Ellie does have plenty of time to keep on progressing. It ain't over yet. She has a lot more progress in her. It's so obvious.

Ellie is so very blessed to have you for her mother! That is a fact.

I love the picture of Ellie, and I love your honesty. Thank you!

Jennifer said...

we love you and you're always in our prayers.... keep hanging in there! Miss Ellie has the world's best guys are amazing and she is blessed beyond measure.