Posted by: katedaphne | March 22, 2009

Broken hearts

First of all, thank you all for the wonderful comments. They are very helpful and encouraging and have given me a lot of strength. xo

We’ve had a few days to start getting used to the idea of A’s diagnosis (officially, Left Atrial Isomerism). We’re very scared, obviously, b/c we just want our daughters to be happy and well and live beautiful little lives. We have some idea of struggle, and I have always said I would never wish what I’ve been through on anyone, not even an enemy, not even the most annoying fertile in the world. And now even harder struggles are being laid at the feet of a tiny little baby, who’s done nothing to deserve it and won’t even have any experience to help her though. She’ll have to rely solely on her own little will. And lots of love. I hate that for her and I’m so mad on her behalf. And I’m sad, sad that any of this has to happen to anyone I love (or, to anyone). Even while I’m not thinking about it, I can feel the pressure of tears behind my eyelids. I’ve given way to them once but am mostly holding them at bay. It is hard, sad work to do so.

Also scared for ME. And Mike. We knew we will have a good team to help her, and pretty good odds, as odds go. But still, we’re well aware of how the statistical bullet works. What if …. I can’t type it … what if the worst happens? I don’t think I could stand it. How much can a person take? Yet I’ll have to, b/c we’ll still have M, who we love and who will need us. People often comment on how strong I am — yet I feel that is mostly b/c they don’t see me at home, in private. I really feel the reservoir is about tapped, and that scares me too.

Mike and I also have some anger and bitterness on our own behalf. We were looking forward to living a relatively normal life as a family, after this anything-but-normal road to get here. We had planned to be as unremarkable as possible. And once again — that is taken away from us. We will be happy and loving parents — but not normal ones. There’s nothing normal about spending years hanging around the pediatric cardiologist’s office and the cardio-vascular ICU. There’s nothing normal about calling the petsitter to mind the dogs while we prepare to move into the Ronald McDonald House yet again. Truly, we know this is the least important, really very petty, concern. A’s medical needs are way more important than my “normalcy” issues. So we feel guilty even feeling that. But, we do feel it. Who could help it?

BUT, all that said, we are really not dwelling on the worst possible outcome. We are imagining doing all the things we thought we would do with our daughters. We are starting to give thought to practical matters like scheduling helpers,  because having one healthy twin at home and one at the hospital brings some logistical challenges. I am thinking about how to decorate a girly little nursery.

And I am buying two cribs.

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Responses

  1. I love, love, LOVE your affirmation at the end. (((hugs)))

  2. When people make those sorts of comments about being strong, I’m reminded of something some wise person said,”What is teh alternative? To die? This isn’t strenght, it’s survival”.
    You are strong, and you will be there to offer your experince, and will and love to your daughter. I’m keeping you in my thoughts.

  3. Oh lady. It is so so very unfair that your daughter has this – and so so very unfair that you have to face this.
    Of course you are buying two cribs – they will each want their own. I bet they will want their own cars when they hit 16 too. Kids, ya know?

  4. So so so not fair. I’m sorry that any family (and particularly, that any child) ever has to deal with something like this, but on top of everything that you’ve already been through, it really must feel like you never get a break.

    Of course you will need two cribs. And two car seats, too.

  5. Kate, I just heard. I am so very sorry – for Baby A for Baby M and for both of their parents. Please don’t feel guilty for ‘selfishly’ wanting things to be normal. Everyone wants that and you would think you would have earned enough points to ensure that.

    I know I can only imagine what this will be like and I just want to say that these little girls will have the best parents ever. You have learned a lot about coping and you will teach Baby A all those things – if she even has any memory of her early years. With a little luck it will all just be some distant story you tell her and she wows her friends with.

    I will be sending you good thoughts.

  6. I am so sorry to read the news. I have not commented on your blog before, but we were in a buddy group long ago on FF. I just want to offer support. One of our twins had an adverse prenatal diagnosis. We ended up doing fetal surgery and having a very NON-normal pg. It was an awful, dark time for us. Although he is doing well now, he endured several major surgeries during his first year of life. I pray that your outcome comes out as well as ours eventually did and that you find strength to get you through what will feel like a very long, intense pregnancy.

  7. There are two things there: Your grief that, once again, you’ve gotten normal stolen away from you and your heartfelt concern for your little girl. Both are achingly understandable.

    Kids are amazing fighters, and I’m sure she’ll be no exception. Your attitude and will are so inspiring. You will all get through this.

  8. Kami’s heartfelt post sent me here and I just want to wish you well. A young friend (18 months) had this surgery last year and it was incredibly trying and frightening for her family, but she did SO WELL. It is amazing what medical technology can do, and this kid is just the happiest, bounciest little sweetheart imaginable.

    I’m sure your hospital will put you in touch with other families in similar situations, but I am happy to connect you with this mother if you ever find you want that.

    Best wishes to you all.

  9. Dear Kate, You have officially pulled me out of retirement- and I am kicking and screaming!! I just logged on to check in and see how things were going from afar, and I am just crushed by this news. I am having a hard time finding words to comfort you and Mike that don’t sound trite or foolish. I know you can handle it (what is the alternative?) and I know that in the end you will be stronger, happier, more accepting… etc etc etc…. but I think a little bit of kicking and screaming is warranted here. Little A and M are the luckiest little girls to have you as their mother. You will teach them such wonder…. even if it is from a hospital room for a while. That is the “normalcy”, right? The rest is just for holiday cards. 🙂

    Sending you love and fierce caring from California. ~Dot

  10. Good for you. Proceed as planned. And as far as feeling guilty/petty, don’t do that to yourselves. You’re just thinking through the possibilities, trying not to get caught off-guard. You’ve been hurt too many times during all the years of treatment to not try to prepare/protect yourself. And you have to plan for what you can, as far ahead as you can, for the sake of your daughters. Do what you must, and don’t feel guilty.

    And kids are unbelievably tough. Much tougher than adults. I work at a children’s cancer hospital – and these little ankle biters put adults to SHAME, let me tell you. Have faith in yourself and your daughters. You’re all much stronger than you know, I think (for what it’s worth).

  11. Sending you hugs in this time of new turmoil. Of course you will get through it, but damn, it would be nice to catch a bloody break now and then, I should think. So sorry.

  12. All of you will pull through this and like everyone said, children are so tough and if you’re daughter is anything like you, (i know she is) she is a fighter and will make it and come out strong.

    Really thinking of you during this time and know you are in my thoughts. ( even though I suck at commenting… Sorry its been too long.)

    xoxoxoxoxo

  13. I have been away from blogland for a while so I’m just catching up on your news. I’m sorry to hear about baby A.

    I work in a children’s hospital and could offer up many stories about successful cardiac surgeries, but know no story can take away your worry.

    However I do echo other’s comments about the incredible resilliance of children – they can get through SO much.

    And so can you.


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