Dad's blog heart-wrenching

Excerpts from Kevin Slack's blog, Carli's Weekly Updates.

9/23/09

I hear the mocker. The insulter of my faith.

I hear him in the echo of the doctors words "Carli needs a miracle, and folks there ain't going to be one."

I hear in the wailing of parents in the room next door to Carli's, who last night lost their own precious child. ...

My insulter does not even bother to whisper any more. He is very bold.

"Where is your God?...Is he asleep?...maybe he is on vacation...Look at that poor family, he failed them too...you beg and beg, but where is he?...If this is love what does it look like if he doesn't care for you?...If he does hear you (he is the all knowing God), then he must be ignoring you...day after day you wait, and where is God, nothing has improved, your child's body is falling apart, not one spot is healing, and your God just watches...

It angers me, because I don't have an answer right now. Because my mocker speaks with my own voice, echoing my fears and thoughts.

9/24/09

I lost count of how many times we changed Carli's bed due to pools of blood. ...

Anyway, this was all day, and Carli was doing her best to keep her head covered and sleep through it all. I left for a couple of hours late last night, coming back to her room sometime around one in the morning, and I was caught by surprise.

"Is that a smile I see?" Carli was laughing with the nurses and Edith. ... Carli was talking, laughing, showing pictures on her computer, ate a Jolly Rancher (let it dissolve in her mouth), and basically just appeared happy, like the Carli I have not seen in a long time.

We watched a silly movie, "Ghost of Girlfriends Past," and my soul just soared.

Yes, like the eagle. I don't know what today holds, but my heart is flooded with hope. Seeing Carli smile is what I needed. Doctor's may call it "False Hope," but I call it "Renewed Strength."

9/26/09

After yesterdays procedure the main surgeon met with Edith again. ... Again he is stating we need to make a decision, and is asking if we are talking to Carli. Basically He wants us to convince Carli the battle is over, she is dying anyway, she should just surrender, stop wasting blood products and go peacefully away so she will have no more suffering.

He wants us to let go and to help her to let go.

How stupid is that.

... Edith's answer was "No, of course we are not going to give up. We will wait on God and see what he does."

That did not sit well with the Surgeon. He asked "Don't you know she is miserable? Don't you know she is suffering?"

A doctor who sees our daughter once, maybe twice a week asking if we did not recognize our daughters suffering? Are you kidding me?

Last night, before I was aware of what she was doing, Edith began to talk to Carli to try to prepare her for a conversation with the surgeon. He had stated he was going to come by to talk to Carli after we spoke to her. Carli's response was to violently cry and pull at her hair.

I stopped her. "Look at me Carli." I had to say it a couple of times. "Look in my eyes Carli. I want you to look in my eyes to see the truth of what I am saying." She finally looked up.

"I am not afraid. Why would I be afraid? How many times have we heard this same story? I am tired of hearing it. If God wants to take you, he will take you and there is nothing to be done about it. BUT THEY ARE NOT GOD. And they haven't been right yet. ...

I then explained to Edith that "no" this doctor is not going to talk to my daughter. I will not allow it.

10/1/09

Edith has been upset, and it is not just this issue with Carli's bleeding. She does not usually read my updates. ... But she did go on the site this week and she read some of the comments. Of course she would be drawn to the one comment that called her (us) selfish.

She asked me if I thought we were being selfish. I laughed. Of course I am selfish. I am unapologetically selfish, because Carli is my daughter. Not the doctors, not the person's who wrote the comment in the guestbook, not anyone else: She is my daughter.

It is interesting to be called selfish. Is Carli also being selfish? She doesn't want to die. She has stated clearly she does not want to die. Should I tell her, "Carli, you are being selfish. I am tired of seeing you in pain. Just give up so I can sleep. Don't you see these poor nurses and doctors have better patients, ones who they think have a future, who they should be spending their time on? You should feel guilty, because you are wasting blood product every day you are alive. This should be spent on someone whose life is more worthy than yours. Look at all this time we have to spend, taking care of you, changing your bed, cleaning you. You are being very selfish.

Maybe Edith is being selfish. She hasn't worked since July of 2008. Has lived in this hospital room with Carli. The only time she has been away more than a day was to help our oldest daughter move into college. Only goes home to take care of the needs of our other children. We trade off nights because you start to go stir-crazy when you are here too long. I don't think she has even been shopping for herself in over a year.

Maybe I am selfish, because I do my best to steal one more kiss from my daughter, to play one more (game) of "Super Mario" on the Nintendo, to watch one more episode of "Monk" on our weekly TV date night. Maybe I am selfish because my day is not complete until I hear "I love you, too,"

I don't plan to stop being selfish any time soon.

11/10/09

We are not moving forward. And though we don't seem to be going very far backward , when you consider the situation there is simply not very far to go.

She still has moments when she is talkative, and will watch a movie with me. But the moments are further and further apart.

Carli had a dream recently, and in it all her friends and family were lined up to say good-bye.

Not what I want to hear.

11/18/09

This particular resident surgeon absolutely does the best wound changes. When he does them, they simply don't leak. ...

He was done around 1 or 1:30. ...

Edith came to me with a surprising request.

"He would like to pray with us for Carli."

"Excuse me?" (I have had doctors say they were praying for us, and we have asked certain doctors if we could pray with them, but I have not had a doctor request to pray with us.)

"He wants to pray."

"Okay. Well. Let's do it."

And so, around 1:30am this morning we gathered around Carli's bed and prayed. ...

After we prayed he shared testimony of miracles he has seen in his own life and his family, and had these final words. "Never give up hope."

I haven't.

01/01/10

Edith says she is open to, can accept, whatever God's plan is for Carli. I hear her. I don't believe it, but I am listening. I have seen how Edith gets when Carli's condition gets bad, and I don't think she is as accepting as she thinks she is.

I don't have a problem with that. Acceptance is overrated.

You accept things that are in the past, those things that are truly done, that cannot be changed or undone. ...

But you never accept the unacceptable when it is your present situation. You never say to someone, " you're life stinks and you just need to accept it," or "so your husband beats you, many people (live) in domestic violence, accept it," or "You are an alcoholic, (or addict or whatever), it is never going to get better, accept it," or "your daughter is dying, accept it."

To accept implies that our prayers are in vain. That our situation is already written in stone. That this is somehow God's will, and that God's will is unchangeable.

I don't accept it. And I certainly don't accept that it is God's will.