Then things just kind of slowly went downhill. Her work of breathing increased, and she was clearly not feeling well all day. They ended up discontinuing the medication they had started yesterday, and then they increased her dose on another one, hoping it can ease some of the work her heart has to do. There was lots of talk about giving her additional respiratory support -- such as putting her on cpap -- but for tonight they are just watching her.
It wasn't all bad. There were some highlights, like getting to read her books this morning, and the bunny slippers of course, and giving her a washcloth bath this evening. But there were a lot of worries today and things overall felt heavy.
The question of the day was, again, how can Cora, who is so marginal and only eight days on the transplant list, possibly sustain this for months and months?
I'm thinking tonight about Dominic. He has a rather unusual obsession with dressing up as a villain these days. His regulars are Captain Hook, and most recently, Darth Vader. And sometimes when he's displaying some poor four-year-old behavior and we ask him to stop, he says, "I don't wanna be the good guy! I wanna be the bad guy!" Well, the other night he said, "Mama, do you know why I always want to be the bad guy? It's because if you're the bad guy, bad things can happen and you won't ever get scared."
I think that sounds pretty reasonable.
Sometimes I'd like to be the bad guy and avoid getting scared or hurt by anything. I'd like to have far more power than I do, and if not, then I'd at least like to flip to the last page of this novel and see how it ends. I feel like if I could just do that, then I would know how much to give of myself, or to not give of myself, and maybe I wouldn't be as scared.
But that's ridiculous because, in reality, there's nothing I would or could change. I only have one mom-speed and it's: All In.
So I am here now, just trying to accept things are they are and as they come. But sometimes I can just picture myself leaning over sleeping Cora, putting her bunny slippers back on, and gingerly removing each tube, line and cord. Then we could tiptoe out quietly and go somewhere fabulous. Like Disneyland.
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love the slippers; love the photo; love your words. what a lovely thought - to slip out quietly and go to disneyland! maybe only eight days on the transplant list, but four months tomorrow of somehow hanging in there and making it yet another day. another day of hope; another day of love; another day of trying to find the right formula to ease her problems until the miracle arrives with her robust health! like so much in life, michele - one day at a time. all in, for sure; one day more! my thoughts and prayers are for you and your little bunny-feet. God continue to bless you all with the strength to hang on - especially precious Cora!
ReplyDeleteHappy 4 months to Cora Vivienne and Happy Birthday to her wonderful Mom and one of my best friends in the world! As you already know, God made you a rainbow for your birthday today (I saw it on my way to work), and I hope he's working on his big gift for Cora today too!
ReplyDeletethink about Disneyland all the time. Maybe even every day. I picture us there, how things were then. How Cora looked in your tummy from the outside, warm and cozy in the excessive heat. You trapsing all around over both parks–over 8 months pregnant, but your only concern was where to head next and how to make Dom and Cosi's Disney little dreams come true. You have always been all in. How many parenting conversations have we had? The question may be how many have we not had in the last 4+ years?! Even in the 100 degree weather and mega preggo, you were all in. Because that's you. We don't know how this story is going to end, but we know how it began. You always wanted her. No matter how crazy life could be, you imagined three. She was meant to be here. And now that she is I, we, will be forever impressed with who Cora is, how she fights, and what great great love she represents. How she unites us and brings us all closer and tighter than ever before.
ReplyDeleteWhat I wouldn't give to go back to Disneyland with Cora in her pink Happy Girl beanie and little bunny slippers.
PS - I should have added, Happy Happy Birthday to you Michele, and happy 4 month birthday to Cora Shabora precious sweet angel muffin . Love you both infinitely. XO
ReplyDeleteHi Michele,
ReplyDeleteI ran into Lance who told me about your blog, and my heart just hurts for you, and Lionhearted Cora. What an amazing fighter she is, and how blessed she is to be surrounded by so much love. She is so lucky to have you as a mother. I remember our talks from the bus, and how impressed I always was by what an incredible mother you were and are. I loved what you wrote...especially the image of Cora in her bunny slippers. You, Cora and your entire family are always in my thoughts and in my prayers.
Much Love,
Annie Carroll
Dearest, dearest Michelle, The All in Mom, with her lion hearted daughter and her wise son. And her precious middle daughter and wonderful dad of these special 3. Those bunny slippers were magnets to Shelby & Ashley, they knew immediately that they belonged to Cora. My heart just aches but swells large with love to see them on her little feet.
ReplyDeleteSo much love coming your way.
Deb Scholey