Monthly Archives: December 2017

0

2017, You Weren’t So Bad

|

The older I get, the more I enjoy New Year’s.  When I was younger, it was all about the thrill of staying up late and seeing the ball drop in Times Square.  I always thought it was so cool that one minute we were in one year, and the next minute we were in another one.  And I definitely remember the change from 1999 to 2000. Our fifth grade graduation party earlier that spring was even millennium themed-eveybody was talking about what a big deal it was, and wondering if everything was going to crash that midnight. Clearly, we are still here, so Y2K turned out okay in the end.

I have come to love this period of the year-the Christmas presents are opened and maybe decorations have come down.  Ads for gym memberships abound, and everyone is talking about their New Year’s resolutions.  It’s a time of reflection on the past year, and thinking about what the next year will bring, and how to bring about positive change in yourself.

I used to scoff at resolutions, thinking you were only setting yourself up for failure, so I didn’t even bother.  Diligence has not traditionally been a strong suit of mine.  But then, last year, I realized that I could accomplish goals (and yes, I had to call them goals instead of resolutions-they sound more long term to me that way), by making them more focused and specific.  For example, one of my goals for 2018 is to do a random act of kindness once a month.  So instead of saying, I want to be more kind, I made a specific way that I can accomplish that.  2018 is also the year I turn 30 (gasp), so I’m looking forward to entering a new decade and finally joining my husband in our old age. 😉

Earlier today, I spent some time looking back over my Instagram posts of the year, and I could not believe how much my girls have grown and changed.  Eisley was a newborn and we had no idea what the future held for her mobility, and Haven was a chubby toddler who had just learned to say book.  Now, Eisley is crawling everywhere and standing with braces, and Haven is speaking in full sentences, able to communicate original thoughts of her own.

IMG_3618

(January 2017-22 months and 3 months old)

 

Eisley started physical therapy, we made it through another busy camp season, we moved to a new house, Josh said goodbye to both of his Grandmas, we celebrated Eisley’s first birthday, and we have seen, time and time again, how the Lord loves our little family and has brought us through.  Eisley had a pretty healthy 2017 (aside from a couple of minor colds and RSV at the end of the year) with no shunt malfunctions or surgeries, which is pretty uncommon for spina bifida.  We are so, so thankful for our 2017.

IMG_3619IMG_3620

(Haven at 23 months old in February, and Eisley at 3 months old in January)

 

Here’s to a great 2017 and a wonderful 2018.  Happy New Year, friends.

 

IMG_3621

(December 2017-13 months old and 2.5 years old)

1

I can’t change disability-but would I?

|

When I go back and read my Instagram post from June 24th, 2016, I can feel the sadness and pain in my words as if I had just typed them yesterday.  It was the day we learned about Eisley’s diagnosis of spina bifida, and we decided to share the news with our family and friends.  I couldn’t stop crying that day, and I felt like my entire world had changed.

IMG_3329

 

And really, it had.

But I wish I could go back and tell myself that it was changing for the better (not that I would have believed my future self, but still).

A question that I sometimes ask myself is, would I change Eisley’s spina bifida, if I could?

The answer is no.  And yes.  It’s a complicated, conflicted answer.

I would take away the physical pain of surgery recoveries, countless procedures, and chronic pain of everyday life.  I would take away the heartbreak that I am sure that she will experience in the future when a blunt child calls her a baby for wearing diapers, or when an adult gives her a pitying look in the grocery store when they see her braces or adaptive equipment.  I would take away the feeling when she realizes that the world sees her as less than, and when she will have to fight to receive equal access to the world.

I would take all of these things away if I could.  But, I also know that if I took away her disability, I would take away a huge part of who she is.

IMG_3293

 

She is strong.  I get so many comments on how happy she is, and I just smile and nod.  Because I know it’s more than happiness.  It is a strength that runs deep.  After her surgery the day she was born, she was on morphine for a couple of days, and after that, she only needed Tylenol.  She was recovering from two surgeries in one-her spinal closure, and the placement of her shunt that goes from her brain down into her abdomen.  She physically works so hard to do the things that typical babies do with ease.  Each time I see her crawling across the floor to get a toy, or when she is grabbing my arm while I sit on the floor and she pulls up to her knees, I know the physical effort she is exerting to do these things.  She works so hard, and does it all with a smile and a gentle spirit.

She is dedicated.  Maybe that sounds silly to say about a 13 month old, but I wish you could see the look in her eyes when she wants to accomplish something.  She sets her mind to it, and she knows she will do it, no matter how hard she has to work.  Her physical therapist has commented on it before, saying, “We just have to show her how to do something once, and then she just does it like it’s nothing!”

IMG_3318

 

She is gentle.  And funny.  She loves to snuggle and loves the cats.  I could go on and on about how wonderful and remarkable she is, but I also want to be careful about turning her into my hero.  Because I want her to feel special, but I also want her to feel like a human being.  She is the heroine of her own story, but she’s not just an inspiration for everyone else’s.

So would I change her spina bifida, and make her just like everyone else?  Ultimately, no.  Because then she wouldn’t be the Eisley Mae that we love and cherish-strong, beautiful, and fearfully and wonderfully made.

IMG_3231