Meet the McNeil Family

Meet the McNeil Family

Thursday, July 11, 2013

Just Breathe

Waverly has been doing much better the past few days. The increased medication seems to be addressing her pain and making her much more comfortable. Thankfully she isn't experiencing any side effects from the drug and is her happy, cuddly self.

Last night, I went in to hook her up to her feeding pump. She wasn't asleep, just drowsy. She gave me some wonderfully goofy grins as I connected the tubes and starting feeding her. As soon as I walked out of her room she cried. I knew that cry. It is a lonely cry. A "mom, please stay with me until I fall asleep cry". As soon as she saw I returned, she greeted me with a giggle and settled down. I sang a few favorite songs, stroked her hair and kissed her forehead. As I looked down at her beautiful smile, I was overcome with anticipation of loss. One day I will not be able to head that silly giggle or see her toothy grin. I cannot imagine the pain.

I sat down on her bean bag chair and cried. 

Eventually the rhythmic sound of her breathing calmed me. I love that beautiful sound.

5 comments:

PK said...

A beautiful post. Know that there are readers out here who hurt with you (though obviously not in the same ways as you do). Waverly and Oliver are blessed to have you as their mom.

Joanne Huff said...

I'm so sorry for this wave of immeasurable grief, Shannon.

Today, driving home from school after a particularly grueling week with Sasha, it suddenly struck me anew how our life and more importantly Sasha's life is altered by this cruel disease. I felt sickened with sadness as I drove the car home and marveled at how unrelentingly painful an unanswered wish such as the one we carry can be. Love to you all, Joanne

Anonymous said...

You know her so well... Nm

Anonymous said...

Praying for you and your family. My heart is so heavy for you.

Kathryn said...

That's good that she isn't having side effects. My brothers seizure medication keeps getting upped, because he's having grand mails so frequently, and he's wonked.