7 Comments So Far

  1. :(( I understand. It’s really annoying when you don’t know what you are dealing and how you will deal with it. Hang on Jackie. One at a time. Now she is well. Maybe it was just virus, or she was too tired and now the virus is gone. I know it sounds cliche, but I believe that Ana is in a good hand. Remember when you said that there’s a guardian angel when Ana’s lab result came really quickly? The same miracle, and those angels will still be there. You are not alone, you know.

  2. I’m curious…is Ana to avoid motrin because of the effects of the liver transplant on the kidneys? I assume she can’t use Tylenol due to the liver. Is she allowed to take anything for fever/pain?

    Also, have you talked with the doctors about your anxiety about Ana’s fevers? Do they ever offer you the “fever is our friend” explanation? Fever is the healthy body’s response to something that it doesn’t like that has come into it -viruses, bacteria, among other things. I have no transplant experience, but if Ana gets a short- term fever, then it goes away, and her numbers remain essentially good….well, it sounds like something’s working to me.

    Is there any lemonade to come from those lemons? Jackie, your family is always in my prayers and best thoughts.

  3. All you can do is take this one day at a time…acceptance is ,as Janne said, a tall order..you’ll get there, but it will always be a trudge. I have no magical words of wisdom here,..I love you and I wish you didn’t have to be going through this. I understand intimately how life can change in an instant ,how you can wake up and wonder “who in the world am I?” You’re still you.. Just a different you. I love you sweetie

  4. I am so glad that Ana got to head back to school on Monday. I was wondering if she was able to go back that day. You are so crystal-clear here about the landscape that you and Jim and the girls are navigating every single day. Every single day. I would think some of the being rundown has to be from the months of learning to deal with all of this uncertainty, and the physical strain on you. Hope you can rest a bit on this rainy day.

    I know you all and Ana have a new guardian angel now in Jessi, and I’d bet she had days when she was tough on herself. Your feelings of coping with a new reality make a lot of sense. The thing I see, too, is that your ultimate belief in life, your humor, your incredible talent, your love of your children and family, have all been coming through intact — and even larger — during this horrendously difficult experience. New landscapes take time to understand and to get your footing. In the middle of all of this, at times I get that part of my brain that feels it is unbelievable that Ana is going through this. But I keep thinking of the way she drew that liver for the class project and the way she sang so amazingly on the stage at the recnt concert, and of her laughter and fun and curiosity, Her strength and indomitable spirit come through, and so does yours.

    Lastly, I love the way your Dad calls you “Kiddo.” I’m looking forward to hearing of the time very, very, very soon when you get aboard that bike…even for 15 or 20 minutes. That is your spirit and soul!

  5. One day at a time Kiddo. Making yourself sick won’t do either of you any good. I’ll offer my own ‘borrowed’ quote:

    “Grant me the serenity to accept the things I cannot change,
    The courage to change the things I can,
    And wisdom to know the difference.”

    Perhaps “wisdom” could be preceded by “strength and” because you will all need to be strong to cope with your families’ lives ongoing. I know for certain you have that strength and there are so many people willing to share their own strength with you to help along the way.

  6. I absolutely love this quote you chose, it just fits perfectly with everything you’ve conveyed here. And wow! Talk about a 1-2 punch: “I think it was easier to be optimistic before the transplant, when I could idealize her recovery. The reality of infection, rejection, hospital visits and complications didn’t factor into that fantasy. I think there’s a part of me that thought it would all be over – finally – after the transplant and we’d just push forward, leaving cancer and hospitals far behind us. There’s a stubborn part of my brain that still won’t accept that this is all happening to Ana (has happened to her).” That is seriously one of the most insightful things you’ve shared here. Wow!

    And my heart opened on this: “I need to let it go and be grateful for each moment – the way I know Jessi did.”

    xoxoxo

  7. Letting go and being grateful is a tall order, Jackie. I think you are a hero if you attain it in moments. Your description of walking through sludge that sometimes lets up then pulls you back is so clear. This seems to be a time where life is so close to metaphor it almost doesn’t seem like metaphor. I spent last night and today until we got the text from Jim that Ana didn’t have to get the biopsy, just feeling sad for the enormous burden of the day to day reality this brings to Ana, you and Jim. The trauma isn’t just will Ana need the biopsy but the stress of living with the questions on a daily basis. My heart goes out to you all the time. Thank you for this blog so I can express this.

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