Thursday, December 10, 2009


On June 24th, I wrote this on Jacob’s blog: I hear the words "beginning of the end" in my head as a ringing bell. It is still really hard to grasp. It's hard when your child looks at you with smiles from cheek to cheek, or when he joins into our laughs about a silly story that his doctor told us tonight. It just feels so unreal.
Both Joakim and I are thinking we have to do the most of the time that is left, and no one knows what the time line is. Is it a few weeks, the summer, until the next respiratory season? No one knows, anyone's guess is as good as mine. I am telling myself that Jacob will let us know, and he is a very strong fighter. The only problem is that I will never be ready.

Tonight, I am listening to his breathing, since he actually fell asleep a few minutes ago. I realize that I'm so lucky to have him, and that I am ready to do whatever it takes. I guess that's the love of a mom.

Almost 6 months later, and we’re back in the same place. Jacob is septic, has pneumonia, and possibly something else as well. He needs IV medication to regulate his blood pressure. The tube is breathing for him. Seizures are part of Jacob’s daily life.

Writing has been the best outlet for me this year. It gives me a way to process what’s happening in our intense lives. It gives it meaning. Tonight, it’s really hard to put words on what’s happening with Jacob and the rest of us.

Yesterday afternoon we had a care conference with his medical team. I knew right away that this conference would be different from previous conferences when I saw the nurse from the Butterfly (hospice) program and the social worker. Two people you prefer to not have in your meetings. Dr. E. started out by getting everybody on the same page by describing how Jacob had been acting over the past week, and how she saw him crashing in front of her eyes on Tuesday afternoon. For her that was the turning point, and as she was crying she told everybody that she doesn’t know how much more we can do for Jacob. The Kleenex went around the room, and set the tone for the meeting. We got to hear terms like “end-of-life care” and “hospice”. We got to hear about making decisions about how much intervention we want to do for Jacob. DNR (do not resuscitate) was on the table. We were told that Jacob was telling us something by being in the hospital 17 times this year.

No one was pushing us to make a decision or what direction we would go, but it’s clear that everybody wants us to start thinking about these big questions. I never knew how it would be to have a meeting like this. I didn’t expect all your doctors to cry with you, and give you hugs as you go through options, and how we as his parents had to describe how we look at Jacob’s life, how we envision the end of life for Jacob. It’s very different to know that your child has a life-threatening disorder than to actually start discussing end of life care for your child. It’s like two different worlds.

It was great that Joakim and I had both planned to stay the night in the hospital. It gave us time to think about Jacob and what we want. We both want Jacob to come home. We’re still hoping he will make it this time, and be able to come home. Coming home will be different. We understand that, but it’s still our biggest hope. Dr. E. said that the one thing she has learned in life is that she can’t predict the future. Jacob might re-bounce again, and do well at home, or he might not. She just wants us to be prepared, and have a plan. The one thing I know is that Joakim and I have the hardest decisions to make that two parents ever can be faced with.

I am joining Christi’s words from the guest book tonight - keep fighting the good fight, Jacob!

Love, Maria.

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