"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be." 

The Lucky One

Most people probably don't think of my life as lucky.

I can usually see it in the eyes of friends and family. Sometimes even strangers. They look at Lilly's hearing aides, her glasses. Overhear me making more appointments. Scheduling more therapies. Bear witness to my pill crushing, and medicine mixing. They take notice that she doesn't walk. Or talk. They hear the latest story about another sleepless night. Or another meal that has gone uneaten. Pretend not to see me wiping away a roque tear while I sit stiffly in front of my computer at work, hoping no one has noticed. Or when I share the most recent diagnosis, yet another doctor has now added to her increasingly long list. 

THE LOOK. 

With the soft tilt of the head. The downward gaze that doesn't meet mine. There sits the look of sweet relief that whispers. "Thank God that's not me".  

The funny thing is, I actually do consider myself incredibly lucky. Every morning, I rise slowly. Pile  my hair up on top of my head. And before my feet even touch the ground, my mind starts to turn. I look over and see her chest rise and fall. Hear the soft snore from her tiny open mouth. I thank God. As if she knows I am staring. Her eyes slowly open. She rolls away, hoping I haven't seen her. I thank God. She wriggles away from my often insistent kisses. I thank God. 

She flashes a sly smile as I scoop her to get her ready for the day. I thank God. She twists and turns. Eludes my grasp as I try and wipe the sleep from her heavy hazel eyes. I thank God. She sits when I want her to lay. She goes left when I go right. I thank God. She kicks madly through the air as I carry her down the stairs toward her first (of many) in-home therapy sessions of the day. I thank God.

My tired eyes manage to whip and slice, chop and puree her purely liquid diet. My clumsy hands work against the childproof medicine caps, the syrups and syringes. I thank God.

I carry her on my hip through the grocery store while other children her age scurry through the aisles. 

She focuses on the overhead lights while her peers hold their sippy cups, and feed themselves savory snacks. She sits silently, while they ask for more. We sit side by side on the porch while the other children champion the neighborhood playground. I thank God. 

Throughout the day I watch her skid by in her walker, hop in tune with the Fresh Beat Band, squeal with delight when a sudden whisper of wind blows through her hair. I watch her hum, sway, scoot when she is playing with her iPad. I watch her swing, toss, and knock over every single toy she owns. Eagerly turn each and every one of the pages in her book. I thank God. 

And in the early hours of the evening, before the sun has even completely set.  I slip her into her pajamas with the penguins on the back. And I settle down with her in her chair. We begin our often rocky nightly routine. I say a little prayer that I get another chance to do all of this with her tomorrow. And I thank God. Yes, I thank God that I am so incredibly lucky.

Being Lilly's Mom

Being Lilly's mom is such a roller coaster ride of emotions. We have our sad days, our stressed-out days, our busy days, and lots of days filled with nothing but pure chaos.

There are moments when her disabilities completely overwhelm me. Moments when I cannot breathe at the thought of having to care for her every need, every single day, for the rest of my life. The idea that she may never go to college, or get married or ever live on her own, paralyzes me with sheer sorrow. 

However, there are other times, sometimes, early in the morning before anyone is awake or late at night when everything is quiet. As I peel back the curtains that face out over the  smoky grey mountains, I find an honest moment that allows me to remember just how amazing it is to be in her life. I am struck with a feeling of just how privileged I am to be sharing each of her days here on earth. 

Here are just some of the reason's it is really cool to be Lilly's mom.

She is innocent. She does not know what it means to manipulate, coerse, lie or deceive. She is absolute honesty, always. 

She has no ego. She is never embarrassed or uneasy with herself. She stims, rocks and giggles at will. She sees no reason to hold back. 

She doesn't have the capacity for envy or jealousy. These are emotions that serve her no purpose. She doesn't know that she is different, therefore, she has no motive to envy her peers. She is content with who she is. She knows no other way to be. 

She is humble. She is happy with a paper towel roll,  an out dated magazine or even an empty shoe  box. "Things" mean nothing to her.  

She lives in the moment. She doesn't worry about the past or fret about the future. She is fully engaged in the moment she is in.

She is pure happiness. A curtain blowing, a fleeting shadow, a simple breeze can bring her endless enjoyment. She can cry and laugh in the very same moment. 

She doesn't hold grudges. Or stay angry. 

She is a love machine. Her hugs are so magical, I am pretty sure they could solve the majority of the world's largest problems. And that soft spot hidden between her neck and her ear....yeah, I am pretty sure that is the eighth wonder of the world.

According to her she has the coolest life ever. She is adored, cared for and has access to endless amounts of cartoons. Coolest-life-ever.