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September 12, 2005

Comments

Coralee

Oh, Moorena....how eloquently you explained the constant "state" of liver parents (and grands too). Yesterday at Shelby's Papa's birthday dinner, Shelby was being her stubborn self about eating "healthy" foods. Mom and Dad hung in there with her and had to keep me in check cause I just wanted to say, "hey, she's got a liver disease, give her a break" and then give her Pringles or whatever she wanted. Shelby's attempts at tears got to me and I wanted to do whatever would make her smile. BUT I know Shelby and Annika and all the children with illnesses need to be as normal as possible and I am awed at how in the midst of all the turmoil (actual and potential) you all keep going forward. Thanks for sharing. I'm praying for you all and that includes Dr. S., too!!

liz

You are all in my thoughts all the time.Hugs and kisses to you and your family.

candace

Moreena, if and when you need to come back to Chicago, please call on me if you need ANYTHING. We are 28 miles from downtown. I really wanted to get down to meet you in person while you were here, but I was not able to with the kids in school and all. Please know you are in our thoughts and prayers. All of you.

Sarahlynn

Thank you for the tutorial; that was very helpful. I was confused about what the shunt was to be shunting but now I have a good picture. I assume it's impossible or too risky to remove the clot itself?I wish I knew what to say.I wish that there was something to say.But as the mom of a "heart kid," *this* I understand:"It's one of the hardest aspects of life for the liver parents. When times are bad, well, they're crap. But even when times are good, there's always the fear that the crap is just around the corner."Oh, yes. Ellie's so tired this week. It's probably just from the big weekend. But maybe, but maybe, but maybe . . . it could always be the heart. Even if I don't talk about it much. Even if I always paint a rosy picture when I do. I know why I'm still clenching my teeth at night.

Anonymous

Thanks so much for explaining - makes much better sense now!I AM a praying type and I will keep these requests in my prayers. tina

Beanie Baby

Thank you for the very detailed explanations. I no longer feel quite so ignorant.I am still keeping you and your family in my thoughts. If you don't mind, I'll light a candle for the shunt (surgery?) in ten days.

Jenn

Moreena,Did I really say something that wise? I impressed myself! Even though I'm a "liver" parent, too, your writings help make all this "medical" crap much easier for me to understand. I *know* of the impending cloud hanging over your head. Our cloud is much smaller, but I still know that feeling in your gut. I'm here - WHENEVER. Both Scott and I are so, so happy you guys bought a cell phone! That is a relief to us! Call me when you have some "free" time and we'll discuss how we can help out when you have to check into Chicago's Club "Med" next time. Take care :-)

Phantom Scribbler

Thank you for spelling it all out for us, Moreena. I imagine that was not easy to sit down and write, nor easy to read over. We are thinking of you constantly here.Annika's bargaining with Aunt Pat brought tears to my eyes.

Sheryl

Moreena, for some reason, reading your post today, all I could think is, thank God Anni has YOU for her mom. And it also made me miss CLASS a bit more, the disconnect is still odd. Praying for happy, healthy days until Chicago and guidance for Anni's great team of docs and nurses.

Hanuman1960

You'll be in my thoughts and prayers.Blessed Be....

Elle

I will pray for those things. When my son was in the hospital I used to ask the doctor what the next thing to pray for was. What number had to go down, or what result of what test was needed. It made it bearable. Your family is beautiful. God Bless you all.

Amanda M

Hugs!! Praying for 10 normal-enough days.- Amanda

Marisa

Moreena, I take it she is not forming collateral veins then? Is that possible with the sort of clot she has? There is a 9 yr old here transplant at age 2 and she has slowly formed collateral veins so thye are thinking and still hoping no surgery for her. If they did surgery it would be in Chicago because they don't do that surgery here. I am thinking of you all. Hugs to Anni!

Becca, Jason, & Natalie

We're praying so hard for Annika. She holds such a very dear place in our hearts - as do you. Please, please, please let us know what we can do. We will be back at CMH on Sept. 22, and we'll look for you.

Moreena

Jenn - Now that you mention it, I'm thinking that actually Kristen, Havalah's mom, said that to me. My head is still all fuzzy. But you have said lots of wise things to me, you know.Marisa - Yes, she has some collaterals, but they evidently aren't forming quickly enough or doing enough to relieve the pressureSarahlynn - Also, yes. I suppose I should say "parents of children with medical issues" rather than just "liver parents," but I don't know enough about other conditions to speak for them. I hear you.Becca - We're being admitted the 22nd, so maybe we'll see you. I doubt we'll be there very early, though. Not exactly excited to check in, you know?Coralee - You are a fantastic grandma.Liz, Candace, Tina, BB, PS, Hanuman, Sheryl, Amanda, Elle - Thank you! All thoughts, prayers, and candles are appreciated. Surely they've all got to be more effective than my obsessive worrying!

Sarah

We are saying prayers for Annika.

Running2Ks

Moreena, my prayers are with you. I hope Anni can get through this. It is so heartbreaking to hear about her mourning. But so comforting, too, that you have 2 loving children who look to each other for that extra bit of support.

Yankee T

Moreena, thanks for the education. You and your whole family are in my thoughts daily. And for whatever it's worth, Older Daughter signed up to be an organ donor, at the ripe old age of 17! Please keep us all posted. Positive thoughts going out to you and yours...

Mike

I've been praying a lot more lately. Which is funny, because I don't particularly believe in it, but luckily, it seems to help even if I don't believe in it.It's at times like this I'm glad I majored in English instead of philosophy.

Rowan

Thank you for the information. I guess I asked a good question...I just wish that the answer had been a "good" one too. I will have Anni in my thoughts, prayers and all such things through Thursday and beyond. I feel so much for you at this time. It is so hard to be the parent of a child with a chronic condition. It feels like I haven't let my breath out in years. Just remember to take some time to look out the window and breathe. Hold her dear and go outside and have fun together.

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Falling Down, November 2004

  • Balloon in hand, my 4-year-old
    twirled across the kitchen floor,
    singing nonsense words
    in her own key.
    "It's my gift!" she declared
    to the world at large, which
    was really only me,
    sitting at the table. Enough
    twirling, and she lost
    her balance, tumbling
    to the floor in a theatrical
    slapstick of elbows and knees.

    She lay on her back
    for a few seconds,
    staring
    at the textured ceiling
    with the mysterious
    spaghetti sauce stain.
    Suddenly she
    began
    flapping her arms and legs
    there on the floor, as if to swish
    the imaginary snow
    into a snow angel.

    "Falling down is also a gift!" says she.

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