Monday, July 9, 2018

My Birthday Babe

You, who have been following our family for the past seven years, have shared in the ups and downs of the road we have travelled with Elena.  I realized, however, that many or even most of you know what we have been through, but you don’t really know our Elena.  As any kid with a disability, she is so much MORE than what her challenges are!  On her seventh birthday, I want to share my girl with you.  I want to introduce you to the heartbeat of our family, our Elena. 

When I look at my seven year old Elena, I see a beautiful little girl with steel blue eyes and long black enviable eyelashes.  She has golden hair, curled just around her face, ruby-red lips that one could swear are lined with lipstick (but aren’t!) and the tiniest bit of freckles that run the bridge of her nose to just above her cheeks.  She has a big girl smile, still waiting on two teeth in front to come in.  When she is able to look me in the eye, it makes a little piece of my Mom heart soar.  She loves getting kisses, the more at once the better and is the most ridiculous snuggler.  Burps, coughs, sneezes, yawns and toots still make her roll with laughter.  Her neck and ribs are the most ticklish  and when she sleeps she looks like an angel.  When her hands are relaxed, fingers open, outstretched, they’re still chubby with dimpled knuckles and are as soft as can be.  She is perfect from the ringlets on her head to her curled under toes. 

She loves all the Disney Princesses, Moana especially, and never tires of the Disney Hits playlist on Spotify.  We have heard them all thousands of times but the ones with prominent harmonies and “big finishes” or crescendos in music speak, really get her grooving.  Her taste is eclectic, dancing along to Taylor Swift to Queen to Mary Poppins.  She’s happiest in the pool where she can float, swim and squeal with each splash.  As any big sis, she often gets annoyed by her loud brothers but just as often, they keep her smiling and laughing.  She laughs when they get in trouble and loves their nightly hugs and kisses.  At school, she loves when her friends talk to her about nail polish, unicorns and their weekends.  Each day this year she would come home with a backpack stuffed with hand drawn pictures and notes.  She loves to swing because the wind blows in her face and that’s always made her smile.  The same with the sun, throwing her head back, grinning and blinking as it shines on her face.  Books have always been a favorite, but only ones that have a good cadence and rhyme to them.  When an airplane flies overhead, she stops every time to listen and then breaks into a huge smile.    She has a strong preference for loud people and if you’re silly and loud, you’re even better.  She likes to be read to, sung to, talked to, cuddled with and told she smart and pretty. When she can get it out, she loves being loud and vocalizing.  Lately, in public restrooms she screams with delight when you flush the toilets, the louder the better, then uncontrollably giggles when you tear paper towel off the automatic dispenser.  When I have to get the ‘honkies’ out of her nose, she always laughs and snorts.  We read the same book to her every night before bed and she’ll fuss if you try to sneak in a different one.  She goes with the flow, is happy 95% of the time and never protests a therapy or doctors appointment.  Elena is funny, sweet as can be, resilient, brave, strong-willed, determined and loving. 

There are many things physically that are difficult for her, but it doesn’t change her spirit.  It’s hard for her to hold her head up sometimes, but she’s not asleep!  So beware, she is always present, listening and taking in her surroundings.  She can’t see very well or very far, but that just means she can hear the tiniest squeak of a floorboard or the sound of an unrecognizable voice.  Swallowing is tough so there may be some drool but she still likes to taste the applesauce her brothers love or the sweetness of strawberries.  She can’t communicate words yet, but she will definitely let you know what she wants, what she likes and what she doesn’t!  It’s hard for her to walk, but when you see her do it, it will leave you in awe.  The things that are hard for her, aren’t for me, but it has taught me to love and appreciate the differences in everyone, and especially to empathize with others who face a variety of challenges every day. 

Elena was not born with the disabilities she must live with every day, but I know in my heart that inside she is exactly who God designed her to be.  If she was a walking, talking, typical seven year old, I know she would be the same.  Those blue eyes would light up just as brightly and a burp would be just as funny.  As her Mom, I have the unique privilege of knowing her the way I do, seeing her overcome impossible obstacles and continue to achieve what science says she shouldn’t.  Elena, our brought-back-to-life miracle, our shining light, teaches us every day to keep our eyes on what is important, what matters, to keep perspective, to be courageous and to fill our lives with love.  Elena has taught me more about life, myself and my faith than anything.  She is truly a gift. 

It hasn't been seven years of storybook bliss, but they’ve been the most beautiful and love filled of my life.  We love you, Laney girl.  You are our light.  Happy 7th Birthday.


Newborn Laney

1 Year old

 2 Year Old

3 Year Old

4 Year Old

5 Year Old

 6 Year Old


7 Year Old

1 comment:

  1. Happy Birthday, sweetie. I love reading about all the work you're doing.
    I know it's not easy but you have a lot of help and support. You have
    Come so far! Congratulations.

    ReplyDelete