Before I try to get some sleep

Addie's somewhat stabilized again. She's definitely more blue than she was before and her heart rate is higher. She seems to slip in and out of good times, then bad. Sometimes she takes her entire bottle. Sometimes she doesn't have the strength to eat at all. She has problems with, well, certain bodily functions, and that scares me. She has apnea spells sometimes at night. All signs that her heart is failing.

I am so, so exhausted. My in-laws and my family have been so helpful. I'm too tired to think about meals or cleaning or laundry or bill-paying and I can't remember the last time I truly grocery shopped for anything other than diapers, snacks, or formula. My brain is in a constant struggle over how I can let my child die and not have surgery to fix her. No one else understands this either. But the doctors insist that, because she has trisomy 13 (a disorder they term "incompatible with life"), she will only continue to have problems. The statistics do point to this, but she's already beat so many other odds.

I have a true moral dilemma. I am not ready to give up on my child, but I am also not ready to have surgery. it truly frightens me to hand my child over, not knowing if I'll ever hold her again, unable to comfort her if something should go wrong. I'm so scared of her dying in a cold, sterile environment, when she could be in my arms. We've been through that already, when she was in the NICU. She would also have a tremendously difficult recovery, even for an otherwise healthy child. Even if I demanded surgery, I would have to struggle to find a doctor that would even refer me. Then there would have to be a surgeon who would be willing to perform the surgery and an anesthesiologist who would put her under, in a facility that would legally allow the surgery in the first place. Everyone is afraid of litigation. My health insurance might not cover the surgery under the circumstances. All of these are things I do not have the energy to fight. I'm ashamed to admit it, but I really don't. I'm scared to even make a decision.

I have this conflict going on in my mind non-stop and I can't believe the stress it causes. Between taking care of Ainsleigh and Addie, fighting with our Healthcare providers, and visits from hospice, it's really hard to even have a conversation with Tim. I'm trying to be strong and focus on Adeline. It's only fair since she has been such a strong little girl. She is so beautiful. She's getting these beautiful long eyelashes and she talks all the time now. She grabs her blanket and holds on while she sleeps. We know she is seeing something because she's starting to look up at people who come to see her. I just wish I could cuddle her without feeling like I'm making her uncomfortable.

I go through this list of things I want to do but can't under our circumstances. I keep thinking to myself, "once this is all over, we can do that again." It's just little things, like buying my own groceries and cooking meals, visiting friends and family, going for walks, taking weekend roadtrips, taking Ainsleigh to story-time at the library, going on vacation, seeing some bands play, staying up late at night once in awhile, leaving the house without having to find someone who's comfortable watching Addie and then staying out as long as we want, sleeping at night. I know that sounds so selfish and I feel awful for admitting it, when I know that it probably means that Addie won't be with us anymore. That ISN"T what I want!! I just wish she could be healthy and do things with us. I just want life to be normal again, in some sense. I just don't want to lose her. I'm scared that I will forget the way she smells, the way her voice sounds when she talks or cries, the way it feels to have her little fingers wrapped around mine, and how incredibly beautiful her little eyes are when she looks up at me. She has the sweetest little face and tiny baby body. Ainsleigh loves her so much. She prays for her every night. I tried to explain that Addie was born with some problems and she is getting sick because of them. Ainsleigh said, "no, mommy. Baby Addie isn't sick. She'll be okay because I prayed for her." How do I handle that?

I always hoped I wouldn't have a child with special needs, who doesn't? Now that I do, I'm surprised at how you sort of separate your love for the child with the struggle over how to care for her. I love Addie in such an awesome way. She's amazing to me, because I know how hard she struggled to come as far as she has.

I'm going to bed now, but I feel a little better getting that all out. I really shouldn't blog late at night. It's that time when I kind of go over everything and try to unwind.

Thanks again for everyone's concern. It's so neat that people love little Addie when so few of you have even met her. It's awesome and it keep me going just to have her existence as a person acknowledged by someone other than Tim and Ainsleigh and I.