Angelversary x2

>> Monday, March 16, 2015

There were two angelversaries this week. Two children lost a year ago this last week.

On March 11, 2014, my lovely FB friend and completely naughty Mommy, Laurie lost her lovely boy Andy to Otahara Syndrome. That loss was raw, emotional, heartbreaking in the midst of what we had going on at the time. When Andy passed, I spent an evening watching Bug sleep. Wondering what in his genetic code we were missing that could mean an early loss. I watched him breathe and sigh, the sure sign he is asleep. I cried for Laurie, such pain, I hope to never know but I have resigned myself to maybe feeling. I am a Mother, and a Mother of child with a scary condition that has no basis in science yet, it's a very real possibility still. The loss of Andy sat heavy on me.

Then a short 4 days later, little Miss Charlee finished her mission and took her last breath due to Batten's Disease . Charlee, whom I had touched and tickled. Charlee that had affected so many people and was adopted by the Utah Senate. She sat on the floor of the House of Representatives and, at lunch afterward, she closed her eyes, never to open them again. Charlee's loss was tangible. On top of losing Andy, I remember being overwhelmed with emotion that I had to repress. But I cried on Glenn. 4 times last year I cried on him about the loss of a child. 4 times he held me while I sobbed at the stars and begged the heavens for it to stop. He said: This is why you do what you do, because you feel.

Too much sometimes, I believe.

It's this dichotomy that I have been working to reconcile. But I don't think I should now. I think I should feel, I think I should cry, I should let the emotions flow, wash over me and through me until only I remain. I should scream at the heavens when Bug has a seizure, and I should expect few people to understand that after thousands of seizures, I am still angry that this sweet boy has to be tormented by them.

He is sleeping now, after a tonic/clonic seizure, after I held him and assured him that it would be alright, that I would not let anything happen to him. He is sleeping now, and tonight, I may just have to sleep next to him.

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