243 Days

243 days since Katy was listed for a new heart.

243 days of worry.

243 days of uncertainty.

243 days of praying.

243 days of smiles.

243 days of tears.

243 days of jumping EVERYTIME the phone rings.

243 days of questioning if this is really needed.

243 days of accepting that this needs to happen.

243 days of learning to love our new normal.

243 days of Why us?

243 days to learn our new normal?

243 days embracing the journey.

243 days of milestones passed .

243 days of accepting our reality.

243 days of planning for the unknown.

243 days of hoping for a miracle

243 days of hope

243 days of being thankful that we have been able to wait this long at home.

243 days of sadness

243 days of happiness

243 of anger

243 of laughter

243 days of loving our girl.

Katy was listed for a new heart 8 months ago. On June 29th it was decided that the best course of treatment for our sweet Kate and her special heart would be a new one. It was speculated that she would have her new heart within 4-6 months, although the average wait time for her age and status is 6-12 months. We thought were told she would have her new healthy heart by Christmas. We thought by this time, Katy and her new heart would be living the new chapter in our lives.

We never guessed she would be thriving and living life at home with her special heart.

I am so thankful for this borrowed time. Since this is the life and heart I know. For the most part I know what we are up against.

I am afraid of what a new heart means for Katy.

New fears… handing my baby girl over to the surgeons to crack her chest open, place her on bypass, hold her little heart(s) in his capable hands, pray that her new heart starts beating right when its supposed to, seeing my darling daughter on a ventilator,again (the picture of her on that at 3 weeks old still haunts my memory) praying she recovers fully, and without setbacks, caring for her chest wounds, new meds, and of course our biggest fear REJECTION!

I don’t know when her new heart will come. No one does. I pray it comes soon. I pray that Katy is able to continue to wait at home with us.