This Part is Hard

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Compared to where we were last week, Emmy is in much better shape. She is making slow but steady progress, and every little win brings us one step closer to holding her.

She was on a paralytic, which didn’t allow her to move, since May 16. It pained me to see her on the paralytic because it seemed unnatural for a toddler to be still. I wanted her to MOVE. I kept asking, “When are they going to take it off??”

Well, they just took her off the paralytic, and she’s moving. It’s a good sign. She’s closer to coming home. But, wow, this part is hard. She has tubes down her throat and up her nose so, when she tries to make a sound, nothing comes out. She is sedated with morphine, but she still reacts to noise and touch. She has her eyes closed, and she opens her little mouth. Her forehead strains. She looks upset and, perhaps, in pain. The nurses have to suction old blood out of her lungs. And when they suction, Emmy looks so incredibly uncomfortable. She squirms away from the suction and seems to be saying “No no no,” but there is no sound. This is hard.

The nurses are excellent, and I know they’re treating her with such care. They give her baths in bed and even put little clips in her hair, which make me smile. So I know they’re gentle and wonderful with her. But I also know that when I see my kids suffer in any way, I suffer. I can’t even watch when they suction her. I have to put my head down.

There is a woman down the hall who has been living here with her daughter for 6 months. I have friends who have lived here for 1, 2, and 3 months. I’m in awe of the strong people who live and have lived on this floor.

This energy here is mixed. In one room, people are celebrating. In another, they are crying. Ten days ago, I was the mom kneeling on the floor outside her daughter’s room weeping and pleading and praying. Today I’m the nervous mom who doesn’t like to see a suction. You swing back and forth. One day you’re depressed and the next you’re panicking and the next you’re feeling positive.

At this point, I see the door. I want out. I am desperate for us to be able to lift the sedation, take out the tubes, and interact with Emmy. I want to see if she remembers me. I think she does because when she hears my voice, she starts moving. Her forehead strains. And I can almost hear her say, “Save me, mom. This hurts. Come save me.”

I’m trying, sweetie. I’m trying.

16 thoughts on “This Part is Hard

  1. Sweetheart, she knows you are there waiting for her to be released from all the tubes and Machines..just continue to touch, hold and talk to her and she will find her way back to you. God bless you all.

  2. She can hear you, she can feel you and she can smell you. Tell her all your favorite things and keep talking, this will keep her fighting. Blessings and prayers to you.

  3. The home stretch is usually the hardest part… but you’ve gotten through so much already. I know you and Emmy can make it through this part. Still thinking of you, praying, sending good thoughts your way! ❤

  4. I read your blog on Tiny Buddha – I enjoyed it very much. You and I have a lot in common. I’m also a recovering perfectionist, a writer, and a teacher who’s taught special needs students. You are so brave for your daughter and she is lucky to have you. I know it feels like a never ending storm of emotion and chaos now, but it will calm down. Until then, I send you well wishes and good thoughts your way.

  5. I am thinking of you and your family. sending so many good thoughts, prayers, wishes….xoxoxoxoxo ❤

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