Another day

I keep writing so its not all so blurry to me later. Bear with me if I repeat myself post after post.

Every day is a huge range of emotions usually including heartbreak, guilt, hope, exasperation, confusion, joy, sadness and everything in between. This morning I woke to a new one.

Terror. I got up and knew Abby was warm, but she seemed so peaceful, I didn't want to bother her. About an hour later I checked her and she was hot. I checked her temp to see 105. I gave Tylenol, because her intestines don't work, I'm limited in what I can give. 20 minutes later she was 106.1. I tried cooling her down with cool cloths, but 20 minutes after that she was blue with a temp of 107. Panic doesn't come close to what I was feeling. Her skin literally blistered on the side she was laying on. I called the hospice nurse, who came right over. By the time she got there, her color had gone from blue to grey, and her temperature was slowly coming down.

Once she cooled off, she's been mostly stable. She doesn't respond much, but seems to make little eye movements if she wants something. Once or twice, she actually opened her eyes.

I had no idea this could go on so long. I am shocked everyday . I think when we finally ready to accept that this was our only choice left for Abby, we saw it as the kindest thing to do at this point. She was in horrible pain everyday. She couldn't recover and we just wanted to let her go peacefully and naturally. I don't feel like what we've experienced is either of those things. She does seem peaceful, but this process is not.

I have to go against every instinct I have as a mother every day. It's not a decision I made once and that was it. I desperately wanted to keep going, even when I knew it wasn't best for her. Every minute since we stopped TPN, I've desperately wanted to restart it. Each day I have to wake up with the resolve to continue to do the one thing on the planet I don't want to do. The longer it goes, the harder that is. Picking up my daughter burning with fever and simply holding her when I feel like I should be calling 911 doesn't even feel real.

I just keep praying that God would take her peacefully. I don't want to be horrified by fever or seizures or any other awful thing in her last breath. This morning, I just kept praying "not like this, please, not like this!". Then she hung on, and I thought yet again how selfish I am. I need to just let go, however that looks. I keep asking Abby why she can't let go so she won't hurt anymore, but it's painfully obvious where that comes from.

I've spent the evening back and forth between hymns and lullabye stations on Pandora while holding a very quiet Abigail. I'm not even sure what to pray for. I guess God already knows what we need.

Come back kid

Just a quick note to say Abby is hanging in there. I thought last night was it. She was breathing erratically, her chest was congested and she looked awful. I didn't think she could keep going like that. She probably couldn't, so her breathing evened out, she sounded pretty clear this morning and woke me up with a "ma" for more juice on a sponge. I know better than to count Abby out, but yet again she proved her point.

All in all, she didn't have a bad day. She was more alert than Friday, and answered us more consistently. Until just now, I felt peace today. Nights are harder. They are so quiet and long. I feel afraid that I'll wake up and she will be gone. I'm okay with her going peacefully in her sleep, just not with her going in general.

I kept thinking today of all the people that have loved her. Her grandparents, family, friends, church, teachers...really anyone that took the time to know her loves her. She is a remarkable girl. This planet just doesn't seem like it could ever be as bright a star without this one little girl on it.



-Abby surrounded by family Thursday; her 86 year old great grandmother sang "Jesus Loves Me" for her that day. Precious moments.

Aching

We are aching through this day. Abby is becoming unresponsive for longer periods of time. We took her outside for a few minutes this morning. It was sweet to have her out. She hasn't wanted to taste anything this afternoon at all.

I don't know how I thought this would go, but I'll say that generally its been awful. I don't want to do this, and every minute of every day I want to change my mind. I have to tell myself the story of what she's been through, and what she would continue to go through if we somehow were able to keep her going. I desperately want to pick her up and beg her to forgive me for not being able to fix this for her. There is nothing, and I mean nothing, on this planet worse than watching your child die.

If I only think of her, I know she'll be perfect and not in pain. I can't do that. I am completely surprised by how selfishly I love her. I want her here with me. I just want her here. There has been this abstract thought in my mind telling me she wasn't going to make it. There have been numerous tests and doctors telling me that her little body couldn't recover. I have seen her in pain, and with IVs and lines keeping her alive for a year and a half, and I still can not believe this is happening.

Can't I just scream STOP! Do over. Not this way. But it is this way, and when I trusted God with my life and hers, I trusted Him for this place I am in.  I trusted Him to have a plan greater than mine, and a place for Abby far greater than the place I am able to give her. 

As a mother, this breaks my heart.  I spent the evening with Jeff and I telling her stories of when she was born, and all the things we've done with her.  I told her about when I was carrying her and her little bottom planted itself under my ribcage and stayed there.  I spent months barely able to breathe.  Feels familiar. 

We told her of times in church, and at the beach, taking her to the mountains, and all the walks through the neighborhood.  We told her how much we love her.  And we do.  We always will.

We just put her to bed, praying for peace and angels to surround her. 

I called Pastor Keith and Nora tonight, to pray with me.  Such comfort there.  Thanks to them for being there for us, even on vacation.  There is nothing like a church family. 

There are also heavenly bodies and there are earthly bodies; but the splendor of the heavenly bodies is one kind, and the splendor of the earthly bodies is another. The sun has one kind of splendor, the moon another and the stars another; and star differs from star in splendor....

When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”  1 Corinthians 15:40-41,54 (niv)

Chosen

I read this on another blog today and thought....how true.


CHOSEN

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you...

If God had told me "this soul will one day need extra care", I still would have chosen you...

If He had told me "that one day this soul may make my heart bleed", I still would have chosen you...

If He had told me "this soul would make me question the depth of my faith", I still would have chosen you...

If God had told me "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you..

If He had told me "our time spent together here on Earth could be short", I still would have chosen you...

If He had told me 'all that you know to be normal would drastically change", I still would have chosen you...

Of course, even though I would have chosen you, I know it was God who chose me for you...

-~unknown

Today was a much harder day. I'm holding my girl knowing that the only thing special about my life is that she is in it. I was chosen, and how blessed am I?