Little Moments that Matter.

This morning she made perfect eye contact with me.  I looked down at her and she smiled big.  She knew where I was and for a moment I believe she really saw me.  This seldom happens.  In fact, when it does, it takes my breath away.  It's hard to believe most days that she doesn't even look at me.  I often wonder if she's ever seen my features for what they are.  I see other babies memorize their mother's faces and mine just looks in my general direction.  So when I catch her staring and her gaze matches mine perfectly, I literally stop and stare as long as she does.  These are the moments that I speak so often about--moments in life that I believe I would be missing if not for this every day reminder that life is fleeting and little moments matter. 

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She makes this grunting sound lately.  It's constant.  But it's verbal and I'm so used to it I hardly notice.  Except sometimes I do.  Sometimes it hits me like a ton of bricks and it's incredibly odd to think that she'll never speak a true word.  How exhausting it must be to only grunt and growl all day every day.  How grueling it can be to think that I'll never hear her voice speak a word. 

Because even though there's this acceptance that most generally surpasses all other emotion, it sometimes creeps in; the painful truths behind it all.

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She still doesn't use the bathroom on her own.  I know her cues and have to physically help her poop every other day.  Again, it's something I'm so used to that I don't even realize I'm doing it anymore.  I don't think about how different it is than other people's 'normal' days.  I do it with ease and contentment because she is my child and her body is awful to her.  She doesn't even have the strength or ability to poop.  And yet, she smiles.  She giggles. 

She trusts that I am here and I will help her do it. 

And I trust that He is near and will help me to continue doing it like He always has [and like I always have.]

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There's this brilliant masterpiece wrapped up in her.  It's name is Love. 

The Bible describes God as Love.  I know this to be true.  And I believe He is wrapped up so tightly in her that love exudes from her every pore.  She is delicate and genuine and purposed for a life far beyond this one.  She is made for eternity; a beautiful solitude of rest and play.  She was designed with a purpose for here, for now, and I believe with everything in me that her purpose is being made known every day. The hearts of those who look into her eyes are touched deeply and they walk away changed.  But I believe that she was designed to go on from this world and live in a home of eternal comfort and beauty.  I see those things in her now and I so enjoy the idea of a gentle, more peaceful forever for my girl. 

 

It isn't scary or sad. 

It is a hunger for rest.  A desire for peace.  It is this comforting knowing that she will be fulfilled in her Maker's purpose. 

 

When I look into her eyes and they match my gaze I breathe deeply in the hope that she has seen me clearly today.  I imagine my loving God doing the same when I peer in His direction at the start of my day.  I believe, as my caretaker, my Father, my protector that He sees for me an eternity of peace and rest as well.  I know He must see a purpose in me that far surpasses this world, like I see in Mabel.  And I believe that for Him, just like for me with my own child, He longs for me to fulfill my purpose here in the most powerful of ways, knowing that it is nothing compared to my reward in Heaven where I will be wrapped in a forever of calm, steady, restful love. 

 

This is the hope and the purpose of having it.

There are a million wonderful things happening in this world that give me hope.  There is research, there are drug trials, there is money being raised and studies being done--all in the hope of finding a treatment and one day, a cure, for batten disease and many more.

 

But beyond the things of this world, my hope always has and always will lie elsewhere.

The hope is that our faith will be fulfilled.  That eternity will swallow us up and that we will be with our Creator.  That the things of this world that are so painful and so hard to understand will be forever trampled by the perfection of Heaven. 

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I listen closely to her noises; the grunting, the grinding, the growling.

I burrow deeply into her neck and smell the scent of her. 

I look intently at her eyes, even when they don't meet mine and I watch her closely.

And I send a silent, reverent thank you to the only One who understands this love-bond the way that I do. 

He made her, after all.

 

He made each of us. 

Today, my hope is that we all learn to catch His gaze the way that she catches mine because I'm certain He stops to stare back for as long as we will hold it. 

It's these little moments that matter, both here and there.