4 Comments So Far

  1. Hi Jackie – I don’t know what I wish for you – that the liver is available and you can get it over with or that you can have a peaceful Christmas with your family and then
    move on to the transplant in the sew year. Either one involves so much anxiety and waiting. Are you home most days when the kids are at school – attempting to keep your sanity – or are you out and about. I am thankful that your days of insurance nonsense are settled at the moment and that Ana’s plan for a transplant is in place at least. I don’t even know what to write anymore hence my recent silence as I wish you all did not have to keep on this monster roller coaster ride.
    Take care and my love to you. Mary-Ann

  2. Ha! These images are such a great accompaniment to this post!

    Acknowledging your call for stability, not making the lunches yesterday, just Being and having a chance to inhale and exhale without drama, just a pause, a break from this weird limbo of not knowing what’s happening from moment to moment. Then the screaming from the bath. Then the update on the phone. Sheesh. Some break. 😉

    But that last update on the phone is so forward-moving, which seems to be how you operate best, so in a way, it’s like just another amazing piece of writing you do where there is a sudden beginning, middle, and end, which you didn’t even know when you composed it.

    Transplant it is! We await alongside you!


  3. OK, I’m compelled to write for 2 reasons: 1. I don’t drink Starbuck’s, but that grande nonfat mocha looks so festively scrumptious I’m going to try one and toast you and Ana with it; 2. your comment about “who will have to die this holiday season so my child can live” hit like a suckerpunch. You snuck that in while I was looking at the ‘old-timey reddish brown cup and chocolate ribbon’, so I reeled a bit at those truthful words. Now it seems I can’t say my nightly prayer for Ana without sharing a thought.

    Yes Jackie, someone is going to die, just like someone dies every day, all the time. And he/she doesn’t know it yet, but someone, SOMEONE is going to become part of Ana. Whether they signed their own donor card, or if their family signs for it – Ana’s donor exists. So I’ll begin praying tonight, too, for that unknown someone, and pray that the gift of life to your child will temper a family’s grief. None of this is in your control, there is no fault, there is no poison. Not even the Starbuck’s.

    I’m a registered organ donor, as are my husband and 2 sons. There is a strange, unspoken comfort in that.

    Good night..
    Nita (Susan D’s Pittsburgh pal)

  4. Someone would have to be nuts in the cabeza to think you should be able to maintain holiday cheer while waiting for a call that could mean your child is going to have a liver transplant, like NOW! (I can picture Ana saying, “Do you think that’s the liver?” when the phone rings.) I have never gone through something exactly like what you and Jim are going through, that is for sure. But I do know that in horribly difficult times, it can help to just go in a room away from everyone and get your anger out, or conversely, to be able to cry — really cry — and be held. (You may be already doing these things.)

    I wonder if listening to a Thich Nhat Hanh CD would help, too — like Peace Is Every Step. The man can make me feel like I can trust the universe, and he has this ability — in his Zen wisdom and mindfulness — to be able to help one quiet your thoughts while really tuning into your feelings. He talks about it being like holding your baby. I know you and I have talked before about Thich Nhat Hanh, and I remember you putting the wisdom of him on Emily’s site.

    That said, ain’t nothin’ like an excellent, warm cup of sweetness and flavor and COFFEE in the middle of everything. (I agree with Stefan’s FB comments — those photos are the best.) Enjoy your mocha! And while you hold that cup, breathe and remember that Ana and you all are in good hands right now. Good hands taking care of her and you, Jim and Emily, and your families. I know it’s hard to fathom, because you have been dealt a very tough hand right now. Be well, my friend. Much love to Ana and you all from Susan

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