Monday, June 30, 2014

The Past, The Future

I was anticipating this.  The past is again coming alive.  I knew when Calvin would arrive, we would be flooded with memories of when Elena was born.  And it's happening.  And it's just as hard as imagined it would be.

Cal is starting to smile, coo, "get busy", all the things that Elena used to do before her injury.  He looks so much like her, it's hard not to remember our sweet little girl that way.  I found a slew of pictures from my old phone on my computer this morning and they really hit me hard.  They were of Elena, those short four months we had her that way.  But, they were also pictures of Elena at Riley, covered in wires and tubes, her swollen little face.  Those days are fresh in my memory.  They partly feel like a dream, but only they're much too vivid.  We lived minute to minute, hour to hour those days.  I honestly feel like I remember every minute from that first phone call to the day we left.  We had no idea what we were facing when we walked out of the hospital.  No idea.

Then I found the videos.  She was chatty, smiley, giggly, holding her hands together, looking Mommy right in the eyes, our ridiculously happy baby girl (and all the things I took for granted).  I remember watching the same video of Elena at least twenty times a day in the hospital.  I remember wondering if she would ever be that girl again.  I can't even begin to explain the sadness that fills my heart when I watch those old videos.  There are still so many why's and what ifs.  The people in those videos are gone, replaced by a different Elena, a different Emmalee and a different Chad.  

The last few weeks have been difficult. There's nothing new really, it just seems like we've had to face the future a little bit more lately, and that pretty difficult.   We're having to face that Elena isn't just a baby anymore.  She is growing up.  And when you're a parent of a child with severe disabilities, growing up is scary.  I'm planning on sending my little Elena to school in August.  I'm afraid of what it will be like for her.  How will the other kids treat her?  Will she have friends?  Will she be scared?  Will she be getting everything she needs?  We have to get Elena a new wheelchair.  Ugh, yes a wheelchair.  To even think about my baby in a wheelchair is such a punch to the gut.  I could barely endure even looking at the different models without having an emotional breakdown.  We are worried about her muscle tone, her hip, her head growth, her vision, her reflux and the list goes on and on.  I've never been a worrier and lately, the worry just feels never ending.

I found myself this morning longing for the days before all the worry and heartache.  I wanted to go back to the day I took that sweet video of Elena and soak up every minute of it.  I can't help but long for that little girl and wonder what she'd be doing today, what she would be like.  There's so many reminders of the past and so much we're facing in the future, it's been hard lately to live in the present.  I just want to enjoy seeing Cal change and grow without having to endure the sadness of knowing he's going to achieve things Elena never will.  I want to live in the present and forget the rest.  I knew this was coming and that it would be a challenge for me.  I'm just praying that like anything else, that we will get through it.  It's just an adjustment, just a phase.  But geez, this one hurts.



Friday, June 20, 2014

Slowed Down Summer?

So much for our "slowed down" summer!  June is nearly over and it hardly feels like we've had any break.  Our typical Jackson Center/Mother's Day Out days so far have been filled up with appointments and busy days.  It's hard to remember how we used to fit everything in!  Elena has only three weeks left of First Steps before she transitions out into private therapy.  Eek!  How is my baby going to be 3?!

Right now life is all about getting to the next transition.  I keep thinking once we get there, things will slow down but inevitably....they don't!  There are always big decisions to make, health issues to manage and appointments to fit in.  It can all be pretty overwhelming, especially when I'm sleep deprived and I feel like my brain is operating at 30% function!  Thankfully, Chad is great at taking things off my plate and assuming the reigns.  I honestly would lose my mind without him.  He's so patient (when I lose mine).  He never complains (when I'm a ball of complaints).  He rarely has time to himself between working all day and then rushing home to relieve me.  He is such an amazing Daddy.  Elena lights up when she hears him come home from work.  Chad works incredibly hard at his job and works even harder to be the best husband and Daddy.  We are so lucky to have him and we love him SO much!

He celebrated Father's Day last weekend by doing all of the above.  I was able to get away last weekend to celebrate one of my best friend's birthdays in Louisville.  He did have to call in back-up in his Dad and Step-Mom to help, but I was able to get away without fear of our house falling apart!  But, I was thankful for much needed girlfriend time and 24 hours without a crying baby.  And for the record, as soon as I got home, I released him to the golf course :)

Before I wrap up this post, I guess I should mention our other child!  Cal is doing well.  Just when I was hitting rock bottom trying to get him on a consistent schedule and doing everything humanly possible to get him to sleep longer than 3 hour stretches at night, he seemed to finally get the hang of it.  Thankfully, we have had several good days and nights in a row, where he actually naps longer than 20 minutes and has slept 5-6 hours consecutively at night.  I'm hoping it's here to stay!  He is as cute as can be, looking exactly like his Daddy.  In the last week, he's showed us his sweet dimpled smile. I had forgotten how quickly they change at this age and how fun it is to watch them develop.  I think we'll keep him :)

Thursday, June 5, 2014

Scars & All

A few things have happened in the last couple weeks that have had me flashing back to the more difficult memories we've endured in the last three years.  I can remember that awful feeling, being in the thick of heartache, not knowing if I would ever get through it.  It's been a reminder to me of just how far we've come as individuals and as a family.

We still bear scars.  My heart still aches for Elena each and every day.  Chad and I often wonder what our life will look like 5, 10, 15 years from now.  Fear still creeps in, tears still fill up my eyes.  I would still give anything to go back and change things.  And even though the scars will remain perhaps forever, they have made me stronger.  They have made me more grateful.  Happier.

Not a week goes by that we don't feel the blessing of someone sharing how our little Elena has inspired them.  I am always humbled to know that my daughter, my precious baby, has touched the life of someone.  I can't explain to you what that means as a parent.  Our Elena and her story, is making a difference in the world.

We'll never know why this happened to us, why we had to endure this.  Just because we expect life to be a certain way, doesn't mean it always turns out that way.  But perhaps you'll be the better for it or that you'll receive blessings tenfold.  If we would have never had to endure this painful life trial, who knows how our lives would've turned up.  And even though the scars are still there, we've come through.  Life can still be awfully sweet, scars and all.

My sweet peas.