We successfully transitioned me from hospice to home palliative care a few days ago. It went very smoothly, especially for how complicated these things can get! The short (10 min) car ride did absolutely wake me up to the fact that getting out of the house is going to be a very big challenge for me for a while. It’ was fairly painful, though it it never came close to to tracking my top “Top 10 Most Painful Drives” recently. Just nothing I want to repeat unless necessary.
You may recall that when Emmie heard I was coming home, she immediately went into party planning mode, declaring that we needed party hats for everyone, even Jasper, and that she would read from a certain Mickey celebration book for Mommy. I was so glad my parents were able to procure said party hats and my Dad even found noisemakers (a decision he would later regret.).
Coming home was probably one of my all-time best moments. Emmie was SO excited. She ran around delivering hats to everyone, simply full of life and energy, but never overboard, then she squeaked her noisemakers as we took several pictures to commemorate this moment. After that, she sat down and had Daddy read “Mickey’s Surprise Party” to both herself and to mommy. Through it all, she kept running back to me to check in that I was still there–hugging my legs, giving my kneecaps micro-snuggles and generally being as sweet as honey.
We are now getting a little more settled into the daily routine. I think I’ve mentioned it here before, but one of the biggest things I do NOT want to concede to Cancer is my ability to parent Emmie. I might not be able to physically lift her up and away when she is having a tantrum, and I might have to be more careful in playing with me, but that doesn’t mean I can’t still lay effective boundaries, provide reasonable consequences for bad behavior and be Peter’s partner in developing effective strategies for our daughter. This has been practically impossible to do over the last few weeks as she’s been shuttled back and forth between two different locations, and multiple friends and family, and as her daily routine was rocked to nothingness. But now we are back to Mommy and Daddy both being at home every day and night. Bedtime is right at 7. Hitting does not fly. Whiny voice get you nothing. Being sweet will get you more than you asked. Slowly we are coming around and thing are returning to normal.
Now I need to decide what I will do with the rest of my own day. Take a nap? Watch a movie? Try to write more or take care of myself? I feel so, so grateful that I am even here to make the choices. I am calling all of this time after my brush with death “Bonus time.” I know I will die at some point, but until then, I’m loving every second of my bonus time. You should too!