Shift, NOT quit

As I've mentioned lately, Abby hasn't been doing well. Although yesterday was pretty good, all things considered.

Last week, I had a long talk with the pediatrician about what to do next. Jeff and I have had several conversations lately,and I wanted to see what the doctor thought. She agreed that Abby is suffering, and not likely to recover at this point. Saying that is NOT giving up on her, it is only shifting our thinking.

Over the last year, there have been many things we wouldn't do or try because most meds and treatments impact the belly. We haven't wanted to slow it down more than it already was. Now, with her spine curving so severely, she is in pain. Her nausea is constant too. It could be pain making it worse, or she could be simply tired. Oh, how I wish she could tell me.

The Dr. suggested we contact Hospice. Hospice is for people who have less than six months left, and we can't know how long Abby has, but her doctor thought they could advise us on comfort measures. Dr. Lowe spoke with them for us, and they contacted me on Friday. They offer many different services, not all of which include hospice services.

Abby will enroll in kidspath, which is a program run by hospice for kids not likely to make it to adulthood. I tried to get her enrolled in it in December, but there were no spaces available. The doctor helped with that, I think. Anyway, they will help advise us as we try to make her comfortable. We will also write a DNR, so if she goes at home, we can comfort and hold her, rather than pump on her chest. I want to make that decision while she's okay. I don't think I'll have the strength to do it in the moment. I want peace for her. I want to care for her in the end. I've known I would want it to be that way for a long time, but I didn't know how to ask for it. I think I'll feel better that I did.

As I write it sounds to me like we are giving up, but we're not. We will continue with all of her care. We will feed, do TPN, antibiotics, and anything else she needs. We just won't do extraordinary things to keep her alive if it's her time to go. We will make her as comfortable as we can, even if it's not best for the tummy. We will also continue to treat her condition as well and as aggressively as possible, without being invasive.

Jeff and I are both at peace with it. We believe we are doing the best we can for our daughter. God will decide the rest.

I also had to write an IEP for her last week. It was awful to speak to the hospice coordinator before a meeting that planned for a year from now. But I did it. Exactly how I would have if she was fine. That's what I mean by shifting, not quitting. We are walking with one foot on both roads.

My friend, who lost her sweet boy last year, reminded me to get lots of kisses and just enjoy her. That's what I am doing. Loving on her, and still hoping that she will do better. She is still our Abby, and we love her very, very much.