The ‘bruty’ of life

A few months ago when I was in London, I had a chance to catch up with a dear friend who has had her fair share of struggles.  Over tapas and red wine, we talked about how life can be both beautiful and brutal at the same time.  Hence, the word ‘brutiful’.  I can’t take credit for this word.  Another mommy blogger came up with it.  But wow – so fitting.  And so true.

The past few years, and especially months have been both of these things – beautiful and brutal.  Every day I watch my sweet Lily and am amazed at how loving and kind and sweet and smart and resilient she is.  And then I get bogged down with her diagnosis – the seizures (she had her very first seizure last week), the fears of when/if other Rett monster symptoms will poke its head out, the struggles she has to deal with on a daily basis.   It is brutal.  And it knocks the wind right out of me.

But then I look at my little girl and shake myself out of my gloom and remind myself that she has so much potential.  And she is perfect.  Just as she is.

I have been accused of being overly optimistic about my sweet angel.  But this is not the case.  I am well aware of the gravity of this diagnosis.  But I refuse to live my life in a state of brutality.  I choose to focus on the hope, the potential, the beauty.

Cousins - one of the greatest gifts from God.

Cousins – one of the greatest gifts from God.

Her second-most favorite place to be; the first being her mommy's lap.

Her second-most favorite place to be; the first being her mommy’s lap.

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Am I strong enough?

I came across this short article the other day which REALLY described – spot on – how and where and why we mommas of special needs kids find the strength to do what we do.  It truly is a joy to ‘care’ for my L-bug, even when we are on vacation, at the hospital.

Click here to read the article (I’ve not figured out how to insert it correctly into this post): strong enough

Sitting pretty at the Mother's Day party in Millburn, NJ, May 2014

Sitting pretty at the Mother’s Day party in Millburn, NJ, May 2014