We could never learn to be brave and patient , if there were only joy in the world- Helen Keller
I’m sitting in the kitchen on a hot June night. It’s a typical evening. Marvin is yelling at his video games. Cary Lynn is snoozing. She’s been on sleep strike for 5 days and it finally has caught up with her. She sounds like a big bumblebee.
I’m hoping that I can finally write everything that has happened since December. Every time I sat down to write a post I either started to cry or have such vivid flashbacks I get physically ill. But I can’t pretend away the last six months. They stare at me in the face every time I look at my daughter
Finally one of our palliative care nurses came over after I begged him to just look at her. She was so swollen and sick. On a cold winter day he told us to take her to the ER. So we went.
So we intubated her and found out that it wasn’t mucus in her lungs. My baby girl had a pulmonary hemorrhage and her lungs were saturated with blood. Her platelets and hemoglobin were at record lows. She was intubated and got her first of five platelet and six blood transfusions.
But she started to mend and fight back. Hard. The team though for sure she could be extubated and we could go home. We tried. Twice. Cary Lynn’s body was just worn out from being so sick for so long. So we made another really hard choice.
Annnnddd one month later……
But I also know this. Even if our time is short she’s still Cary Lynn. She still loves driving her brother crazy. Playing with her bunny. Eating cotton candy. Watching Daniel Tiger and being read to every night. Unicorns.