Home, again

Abby came home yesterday afternoon. The heaviness Jeff and I feel each time she comes home is almost overwhelming. I can't believe it's possible for her to be even sicker than before,but she is.

Because of all the other meds she's on, we couldn't start any seizure medicines. We also moved most of her other meds to IV forms. We do have emergency seizure meds, but this is very scary. We are all on pins and needles because we don't know what caused them.

The last two days she has been in a significant amount of pain. When it comes, she's almost panicking. She holds her breath and throws herself back. Its very scary for me because it almost looks like a seizure. But we tell her to breath and she relaxes.

I know there is a reason for us to be here in this place. There is a reason God is allowing us to experience this in this way. I would be lying if I said I didn't hate it. Seeing her in pain and sick everyday makes our original decision to stop easy. Seeing Abby, my daughter, squeal with happiness when the doctor said she could go home, and laugh when her grandparents come in the room, and smile her big Abby smile when she sees her sisters again makes it all feel impossible.

I want to do what's best for her more than anything. It just feels like letting go of all of those sweet moments with her is more than I can do. I keep waiting for strength that is not my own to fill in, but most of the time I feel weak and scared. I always thought I would be able to let go when the time came, but it is so much harder than I could have ever imagined. Even when we wrote the DNR, I envisioned her being at home and peaceful with us. But that DNR is still in place at the hospital, and it scares me, because there, I only want to treat her. The last day we were there, I had that moment when I knew if she stopped breathing, I would pick her up and rock her the way I always have. I had a single day I felt like I could let go.

Then I brought her home, and saw her here with her sisters, and again, only wanted to hold on. She seems so fragile, and over and over we are told how sick she is, but then she's lying in her own bed sleeping, and again I can't imagine her not being there.

I just keep praying for her and over her. Praying she would know peace. I tell her about heaven each day. "you are one lucky girl Abby, you are going on a wonderful trip, and you are going to WALK there all by yourself. You will see Jesus, and all the people who love you that are already there. You are our forever child, and we will be right behind you".

I absolutely believe every word of it, so why is this so hard?

Abby popping her head up to say "good morning!"



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