April 27, 2011 cl/cp, heart defect, Wife of the Prez 0 Comments

I see this label often on the shared list and advocacy sites.

It hits close to my heart to see it.

I don’t think as I used to of the FEAR.

Of the what ifs.

Of genetic syndromes.

Of shorter lifespans.

Of lower intelligence.

Of open-heart surgery.

Of speech delays that may take years to overcome.

Of unanswered questions.

Instead I think of the JOY.

Of melting popsicles running down their arms as they savor every last sugary bite.

Of giggles and squeals as they play in the ocean waves and on sandy beaches.

Of running and swinging and sliding and jumping and running some more.

Of beautiful wide smiles that remind me of just how hard they fought to live when they had no one to fight for them.

Of a little girl fishing on the banks of a river with her princess pole.

Of a little boy creating a truck and camper out of LEGO bricks all by himself.

Of hugs and kisses coming at me from all sides and “pick ME up” because yes, they do both want to be “Momma’s baby.”

Of little girls dancing and twirling for their first ballet performance.

Of watching their delight in the seemingly simple art of blowing bubbles.

Of knowing that, while the art of blowing bubbles is anything but simple for cleft-affected children, they WILL blow that bubble out of that wand.

Of seeing the label “SN: CHD and CL/CP” and knowing what might be for the ones who still wait.

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