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Wednesday, November 3, 2010


I'm testing out a beautiful shade of dark gray on my fingernails. It's by Avon and it's called "Nocturnal." Gray is very in right now and I'm finding myself jumping on gray's bandwagon.

I'd like to say that my attraction for gray is in color only, but that wouldn't be truthful.

I'll just warn you right now that I don't really write about the really tough stuff. Some may think day to day things can be hard or talking to ego inflated doctors is hard or life, in general, is hard. It's nothing compared to the deep down stuff. The really tough stuff that surfaces when you're just left to your own thoughts and dreams.

You'll have to excuse me, I'm at the airport tonight.

I read a blog entry by Kelle Hampton tonight called Grays and Colors. She writes of her daughter with Downs Syndrome and life expectancy.

Life expectancy hasn't really been something I had visited when thinking of Christian's future. Not because I'm avoiding the subject, because there's no reason, at this point, to believe he wouldn't live a long life. I mean, thank God, he's healthy and has no respiratory issues, not even the slightest cold. I'm deeply thankful for this.

But recently, I don't know what set me off on this tangent thought and I'm not sure if I heard the question out loud or if I asked it to myself regarding your children outliving you. But, every parent hopes and prays they'll pass on before their children. I'm no exception.

However, when I dug a little deeper into my own psyche, and really thought about the concept of wanting to pass on before my children, I had a different answer for Christian.

The truthfulness with myself took me by surprise, but it was truth nonetheless.

I had to analyze this question knowing what I know to be true now. What is true is that Christian needs to be taken care of. He is my forever baby. The truth at this moment is that he needs a lot of assistance. Assistance to do everything.

I'm not counting out more healing in the future, but as the truth lies with us right this second, in Christian's current condition of depending on someone else to take care of him for his everyday needs, I can honestly say I'm not sure I want to pass before him.

The sole reason I feel this way is because I'm scared of what would face him if I weren't here to love him and protect him. I'm scared of the unknown. And maybe it's way premature to even think about this stuff, but it's there, floating around in my head.

Tough stuff, I know. I don't mean to get all "gray" on you. But it's the truth. After reading the Kelle Hampton's blog addressing her thoughts and sadness pondering life expectancy for her child, it hit a nerve.

By no means do I sit around thinking about my son dying. Please. After our first encounter with death, I don't really wish to revisit it...ever again. And when I picture these thoughts I picture both Christian and I old and...gray.


WhitneyBooze said...

Yep - I hear you - loud and clear. I have gone around and around with the same thoughts. At first, when Suzy was in the hospital, fighting for her life, I thought the worse thing that could happen was that she would die.
But she didn't - she lived - and we thank God every day.
And I still pray for her her to live - no parent wants to have to bury their child.
But as time has gone on I know realize something - and maybe it is an ugly, unspoken truth that many other have - but now I pray that I DO get to bury Suzy. I pray that I DO outlive her. Becuase NOBODY will EVER love her, and take care of her like Chris and I. My heart cries louder when I think of her as an adult in an institution with strange nurses caring for her than when I think of her funeral.
(sad, but true, and just another crappy and painful part of this journey).
But I have made peace with this thought.
I know it's BECAUSE I love her SO MUCH that I pray for this.
Nothing is stronger or sweeter than a mother's love.
Thinking of you. WHitney

Alicia said...

I appreciate you "getting all gray" on us. It makes me understand you and your wonderful heart more. Thank you so much for sharing, even the gray times.

Hugs and love to you...

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