Thursday, January 14, 2016

The Life of a Heart Parent

"So, how are things now that Tehilla is all better?"

"You must be so glad to be living life normally, now that Tehilla is doing well."

"It's so nice to see you worry free."

These are common things said to Ron and me quite frequently. The speaker is always well meaning and genuinely cares about Tehilla and my family. It never feels good to have to correct them.

"Actually, Tehilla is not all better. She never will be. She will live her life with half a heart and will always be carefully watched."

"Tehilla is not exactly well. She is in heart failure. Looks are deceiving. Yes, she's undeniably adorable and her skin tone is a beautiful shade of peach. But she needs 5 strong medications a day to keep her heart functioning."

"I don't think we will ever live our lives worry free. There are no guarantees. Tehilla looks great and has survived 3 surgeries, but she needs at least one more. A large portion of these kids end up needing a heart transplant later on. There is no telling what the future holds in terms of her health and future surgeries. We thank G-d for each day and live our lives in the moment. We push devastating thoughts out of our minds, we don't plan too far in the future and we don't take a single day for granted."

We are blessed. Truly and completely blessed by G-d. Hashem saved our daughter's life.  We live every day fully aware of how truly special our little girl is.

Tonight, a friend lost her baby boy to HLHS. My heart is broken into all kinds of complicated emotions. Ones that I can not properly articulate. My feelings are too raw and my arms ache to grab Tehilla out of her crib and hug her. (I won't because logic dictates that I love sleep too much.)

This picture of her is so silly and delicious that I find it soothing. It reminds me of the hope and light that we have to hold onto.

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