Monday, March 19, 2018

Changing Seasons

Looking at my girl, I'm coming to terms with the fact that she is growing up.  I've had several moments of late where I stop, look around me, and think - where has time gone?  Elena is closing in on seven years of life - SEVEN!  She looks every bit of it too.  This realization has had me in a perpetual state of wonder and reflection.  How did we get here?  What happened to TIME?

Following Elena's injury, it was like someone had take our life, crumbled it into a million pieces, shook it up in a bag and handed it back to us with assembly instructions in Mandarin.  There was so much time spent sorting through the grief, piecing our life back together again and in fear of what our future, what Elena's future would look like.  It breaks my heart to think of our naivete at leaving the hospital with hope that Elena would "wake" up from the medication she had been given, and settle back into the "old Elena".  I knew in my heart she would never be the same, but as a Mother how do you come to terms with that?  You may remember that we clung to Ephesians 3:20 "Now to him who able to do immeasurably more than we could ever ask or imagine according to his power that is at work within us."  I was certain this meant recovery, healing, restoration for my broken baby girl.  

Those early days I worked with Elena around the clock.  We were constantly going to doctor appointments, therapy and if we weren't doing those, I was doing therapy with her.  It was overwhelming and a rollercoaster ride of emotions.  But, I began to really understand her.  I was learning my daughter, soaking up information about her vision impairment, GI issues, muscular struggles and bone development.  Though this role gave me purpose and hope, I often found myself in tears, feeling much more like therapist and manager than Mom.  

Then came the Jackson Center, it became my sanctuary.  It was a place where kids were like Elena and the other Moms understood me.  I could ask a hundred questions and listen to the wisdom and compassion from the other Moms who had been in my shoes, comforting me and quelling my fears.  That was such a critical time for me, it was a time where I began to accept that Elena's life would not look like the one I had dreamed.  I was learning to both grieve that and be ok with that.  While Elena performed hours of grueling therapy, I would have a little bit of therapy myself.  

Somewhere over the course of this time, I found (one of many) a miracle.  Peace.  I'm not sure that I ever once prayed for peace over this situation.  But, then again - Ephesians 3:20 ".....more than we could ever ask or imagine".  Granted, I would give anything, ANYTHING for my miracle to have been for Elena to be healed.  And it will be my forever prayer to see her continue to achieve.  But, this recent time of reflection has given me perspective, which if you've read anything I write, I am a firm believer in the incredible gift of perspective.  And this bout of perspective flows from the peace that is within me.  

I will forever grieve the expectations I had for Elena's life.  I will forever grieve her struggles, our struggles as a family over her injury.  I will forever have good days, hopeful days, joyful days and angry, fearful, cripplingly sad days.  But the resounding beat of my heart lately has been peace.  I am at peace with my beautiful girl, just the way she is.  This doesn't mean I'm not constantly searching for ways to help her, make her life easier or pushing her to achieve.  It means that this life, her life is meaningful and rich and fulfilling and lovely even in it's broken form.  

It feels as though a new season of life is ushering it's way in.  Oh, I'm still in the trenches with her wild and crazy brothers, schedules, and such, however I'm settling into a better rhythm.  A more stable one, a more hopeful one, one with loads of perspective.  Being a sharer by nature, I feel like it's positioning me to be able to be more generous in supporting others and paying forward the experience that all those Moms helped me (and still do!) with along the way.  And there is just so much darn hurt in this world to help. 

My days are long, my to-do lists longer, and there always seems to be a kid who either needs something or needs to be cleaned up after.  But as I crawl into my bed each night, there's an inner satisfaction with this wild, difficult, fulfilling, joyful life of mine.  I never could have imagined it this way, or honestly, nor would I have wanted to, but that's the how the beauty of my faith works.  I put my trust and hope in something bigger than me, my circumstances, my control and my failures, and somehow, inexplicably (but actually very explicable) in the end, it gets redeemed.  My heart gets changed over and over and over again.  Fear and anxiety get replaced with peace.  Despair and heartache with joy and gratitude.  And the promise He made to me in Ephesians 3:20 will continue to reign true again and again with more blessings than I could ever ask or imagine.  The best of which, to spend each day with my living, breathing miracle, who is and always will be my greatest inspiration, my Elena.  

Thursday, March 8, 2018

Coming Out of Hibernation

This may be the longest hiatus to date I've taken from sharing with you.  I wish I had some terrific announcement or news to update you with, but really it's just been life.  You guys, I'm having trouble lately catching my breath.  I don't like it.  Everything is whizzing by and I feel like I have hardly a second to interpret it, before it's like three weeks later.  I hate talking about how busy I am, because newsflash, everyone is busy!  But my busyness feels hollow and lackluster.  I'm desperate for inspiration, for insight, for anything other than going all day and hardly being able to keep my eyes open at 8:02pm.  Who am I?  Where am I?

Since January, my last post (eeeeeek!), I can hardly come up with one legitimate thing to share with you.  The boys and I took off for Arizona for a week in mid-February to spend some time with my parents and the sunshine.  But that's it.  Isn't that terrible?  It's like I have no idea how I've arrived on March 8th.  Part of it, I know, is just this season of life.  I'm needed A LOT.  Sometimes that's endearing and affirming and other times it's suffocating and straight-up annoying.  Finding balance between those sets of emotions can be tough.  In the midst of that, I'm constantly looking for inspiration and perspective.  It's not always to be found or better yet, I'm too tired to articulate it! 

I know you guys get it, many of you are in it with me, some of you have been through it, but I appreciate the grace nonetheless. 

For now, I'll leave you with a quick Elena update.  In the next few weeks, Chad and I will be meeting at school to revise her IEP (Individualized Education Plan) for FIRST GRADE.  I'm dying a little when I say that.  With two years of Kindy under her belt, she's pretty much a pro!  Ha!  This year has been much better for her, not without it's own set of challenges and struggles, but we've been much more confident in her time there.  You guys, she's huge.  Her legs are like a mile long and her sweet, chubby baby face is growing into a bright-eyed, beautiful girl one.  All eight of her front teeth have been replaced with adult sized teeth, which is still insanely adorable, but gone are the days of her gap-toothed baby teeth.  She's still as happy as can be, laughing when her brother's get in trouble or start to cry, and squealing in delight when it's loud and chaotic.  She still loves music, school, her therapists and being told she's pretty.  We remain encouraged about all the possibilities for her future and all her achievements.  But, she still has her struggles.  Her little body can be so frustrating for her and for us, as we watch her light up with intent, then struggle to act.  We are still praying and believing in a solution for her to easily communicate with us.  Patience is a virtue in life and especially on this road we walk with her.  But, we continue to trust God and her team that we will be led to just the PERFECT device/routine/adaptation for her.

You guys, the best part is seeing every day how ridiculously, utterly, totally loved and adored this girl is.  Not just by us but by friends, family, classmates, teachers, therapists and anyone who sees her big hair bow, glittering blue eyes and toothy smile.  Just this week, two of her little friends at school painted her a picture and hand-made her a coloring book.  I emailed her teacher to ask if they were specifically for Elena and her reply was YES!  The girls in class simply adore her!  This confirms to me, that even though my precious girl is without words, everyone is drawn to the light that shines from her.  This makes me beam with pride and comforts my heart to know how loved and appreciated she is.  What a gift! 

Happy girl.

Being silly with one of Calvin's Valentine surprises!

Standing tall with Miss Polly (her PT)