Previously written on Caring Bridge.
You see what I want you to see.
You hear what I want you to hear.
The carefully cultivated facade of a woman, a mother, who is trying to hold it together.
To hold it together for her girls.
To hold it together as the support person for her family.
The reality of what I feel on a day to day basis is enough to make anyone crumble. Yet I keep going, even though I am crumbling, breaking, dying inside.
The pain is so much more intense than I ever imagined. I remember being at the hospital and having the doctors tell us she might not survive the next few days. I wailed on the floor, crying at just the thought of losing Sloane. I remember being asked if we wanted a DNR in place in case she coded. I again, shook with fear at the thought of losing her. That was June 2021.
Then she started getting better. Then when all seemed lost, she started coming back to us. She started to become alive again. To sit up, to crawl, to walk with help, to play, to eat. Then it all went wrong. That was July and August 2021.
I thought that when she failed to respond to antibiotics for her ears, it was just a mistake. What we were being told by doctors was right, she would be back to normal…just one more antibiotic, just get ear tubes, she would be our happy baby again. I should have listened to my momma instincts. Oh how everyone was wrong. That was May 2021.
Then it happened again, misdiagnosed as swelling around the tumor only to find out that no, it’s not swelling, it’s new tumor growth. How we missed another opportunity to get it right. To fix what was going on. To try and get a step ahead of this awful disease. That was September 2021.
Instead, she died. She died in an ambulance surrounded by doctors and machines. She died without us. If we had known that the trip to OSU would have killed her, we wouldn’t have let it happen. We were told “this isn’t it, this isn’t a Hail Mary, we have options”. If she had been able to stay at OSU and we could sit bedside with her, we wouldn’t feel awful for not being by her side when she died, holding her hand, holding her body, rubbing her head and telling her we loved her more than life itself. That was September 14, 2021.
You see what I want you to see.
You hear what I want you to hear.
The carefully cultivated facade of a woman, a mother, trying to hold it together in the wake of the unimaginable. This is today, this is my everyday.
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