Dani - Cedar's 8-11-19

WARNING: LONG AND NOT FOR BABIES

I think I have PTSD from yesterday. Watching my daughter suffer in very severe (I-want-do-die pain) for eight hours. We do not blame the doctors or nurses, of course. Complications happen. They are the best. They were all moving as fast as possible and very caring. We are grateful to be at the best colon-rectal facility in the country. I will be writing thank you cards to ever nurse, doctor, and toilet cleaner.

It was like seeing myself in the mirror all day, all week. I was Dani's age when I went through my years of high-does chemo, bone marrow transplants, complications of the Pneumothorax after (emergency surgery) putting in the Portacath and double lumen Hickman line on a Saturday - fevers of 106 plus while in isolation at Hoag for days and days, no esophagus lining to even swallow a Tylenol. And, oh, the pain. I knew I would die there in room 860. I never expected to leave that room, ever! There are only four rooms, one on each corner for isolation. How I survived, I have no idea. Reliving my own trauma from many surgeries, hospital stays, chemo, hair loss, steroids, friends dying from cancer and Aides, fighting two cancers --- and trying to be supportive for Dani has...?? no words! Every time I pushed the nurse button the flashbacks came rushing back.

Yesterday, Dani was begging them to take the pain away. She kept saying, "I cannot do this anymore". I have been there, in her hospital bed. She really said, Help me. I want to die. She meant it. 
Begging, crying, doubled over in severe pain. Seeing your child like this is not something I can forget. Talk about a fucking rollercoaster of life. From helpless patient to helpless parent.

It was as if we had matching hospital gowns (colors not changed), matching thoughts, matching fears while being rolled down the elevator to the scans and MRIs....that fear of "where is the nurse" my veins are burning. Not eating for weeks. What will the results be? More surgery? More cancer, in my case.

I get lost coming home from Cedars almost every day. My brain is on overload. My emotions, -- don't even think about it. She is going to need a lot of help when she gets out. I will be there as much as I can, while trying to work and hold down my business.

But I am coming away from this experience stronger than ever. People who live in their glass houses and cannot handle life's ups and downs, do not cross my path. I have no patience for you. Pay your bills, man the fuck up, stop whining, be grateful for your life, no matter what. If you can eat, poop, do your dishes, walk, then do it. If you are in ill health from lack of exercise, then get to the gym. I don't want to hear a complaint because you have to work! Be grateful you can work. Some cannot. Many Vets and others ride bikes with one leg, one arm, run marathons in their wheelchairs. There are no excuses!

Dani will be living the rest of her life pooping in a bag, thanks to negligence that happened in 2015 at a different hospital. She suffered these last four years for nothing. That news, alone, on Tuesday out of surgery, nearly put me in a walking coma. But she will adapt. She will make the best of it. She is happy she is out of pain. She wants to help others now. Follow her lead. Volunteer. Help another human. Be kind. Say hello the homeless and mentally ill, it could be you some day.

Today, so far, seems better. How Team Rebecca Riley did what they did with such strength and continue to do is the best example of being a strong parent. I can say that doing this all alone has made it extra difficult.

Most people don't want to hear it, or deal with....yeah, the glass houses. Be careful, it could be you some day in that lonely place.

The only people I can talk is you, here on FB. My friends here are supportive and your feedback has gotten me through every minute. Thank you for caring!

The Rileys are my mentors and heroes! Team Riley gave me courage. They have been through much more and they keep living, laughing, loving, and sharing! Learn from them too. Dani wants to meet you Rebecca Riley!

Looking for some bright to pull me from this darkness, this sadness for my baby, all 5'11 of her. I will stand stronger. I will pay it forward, as she will. We are grateful, at the end of the day, because we are blessed with knowing that the only way to live is in finding gratitude in every corner. Be your best self today. Donate! Send a stranger some money! Send someone in need some money. Help others, with no expectations. Dream, live them, work for them. Love your loved ones. Tell your friends you love them today. Most of all, don't be selfish, unless you like misery. Write! Journal! Make memories! See how it easy it is? Are you smiling? Are you petting your cat, dog, hugging your kid? Money and material things are far from happiness. Make your own "happy" :) We all survive, until we don't. We all die. I thank God for saving me over and over so I can give back.

If you don't like my post, please feel free to unfriend me! I don't like you either.

For all who have been texting and offering me support. Love you! Thank you!