The Hardest Parts

I’ve hit a place where now I’m writing about things that I have a hard time talking about. It isn’t that I don’t want to talk, it’s that everything is so close to the surface now that if you ask me at the wrong time how I’m doing, you could just make me cry. Watchout. Because I’ll tear up but then laugh it away and the next few minutes with me may go something like this, “boo hoo hoo hahah hah HA HE hee hoo hoo boo hoo HA!” Yeh, I’m also wearing my sunglasses more, like Corey Hart suggested, at night. It’s my clever way of hiding my leaky puffy red eyes. And it occurred to me that the celebrities who do this – maybe they’re not aloof and pompous, maybe they’re sad? Celebrities – they’re just like me!


There’s also the matter of my Anson, who doesn’t much put his feelings out there for others to see. The things that we’re living with now belong to both of us, so in my writing I have to tread the line of not exposing things that he’s not ready now, or maybe ever, to put out there.


Still, I DO want to write. I think because it helps me get my head around all the circles that are being talked around me. So sit down, have a cup of coffee, put your feet up, and get an eyeful of what is the hardest thing I’ve encountered in my life, so far.


My doctors, and a lot of doctors are involved here, are talking to me about possibly terminating this pregnancy. So these conversations have landed me on a (so far) 3-day crying jag. I AM, however, proudly able to time these delaminating episodes while Roan is at school, Anson is at work, and I have full reign of the soundtrack to my sadness. I’ve been listening a lot to Rufus Wainwright, while sprawled out on my couch with a tissue box and a glass of water because I get really thirsty when I cry. Don’t be jealous, it’s not as fun as it sounds.


When I’m able to pull it together during the day, I alternate between talking to the Insurance Company, Receptionists, and also a robot who tells me again and again that my call is really important to her.  I also clean my house. The women in my family do this – we clean when we are angry, sad, anxious, or on the telephone. I can’t help it. But at least my home is neat and tidy for all the people I’m isolating myself from. That’s another thing – I’m craving isolation. It could be depression, but it doesn’t feel like that. I just feel like sitting with my own questions now more than answering other people’s questions. Most likely because I don’t know any answers.


I have a deadline here – we need to know which way to go ahead within the next two weeks. And we won’t have all the information we need by that time. So I’m pretty sure no matter how this plays out, I will be full of self-doubt, guilt, feelings that I’ve failed this baby, that I’ve failed Roan, that I’ve failed Anson, and that I’ve failed myself. Believe me – I know these are not fair feelings for me to take on, but somehow I don’t seem to have much control over this torrent of culpability raining down. No one wants this baby to be with our family more than me (except maybe Roan, but that just breaks my heart all the more). And no one wants to protect him from a lifetime of being sick or as one specialist described it yesterday, “having a very bumpy and painful road to travel, from the moment he will be born”, more than me.


So. More appointments with new doctors and specialists next week, and maybe just maybe something hopeful will manifest with new eyes looking at this guy. Just as likely, or maybe more likely though, is the reality that all the authorities will continue to be confused with what’s happening, give me worst-case and best-case scenarios, and Anson and I will be left staring at each other again hoping one of us has something wise to say, or even better, the wisdom to make the right choice for our baby, our 5-year-old son, ourselves, and then whatever strength it will take to follow it through.

39 thoughts on “The Hardest Parts

  1. Jodi, I’m very sorry that you are having to go through this. I am wishing for a positive outcome for you or, if that isn’t possible, some peace about whatever direction you take. ((Hugs)) to you.

  2. We’ve never met, I found you both via Joe Hayes/ccfb and your brother, and yet I just wanted to say that I am holding you and your family in my heart. I don’t have words for you, only love from a fellow mom, gal person, and wonderer.

  3. J- I can only imagine the torment this must be putting your heart through. And I have to apologize for the long email loaded with big questions I sent you. Feel free to disregard any or all of them. Please know that I’m here for you. And for the record, I don’t think there’s such thing as a wrong decision. Listen to your heart. It will tell you everything you need to know. The trick is getting your head to shut up long enough to hear your heart! I’m of course speaking from experience here.

    Love you always!

  4. *hugs* Thinking of you and your family… Hoping you can find peace with whatever decision you make in the end… Because it will be the right one for you guys.

  5. Jodi, I cannot imagine the pressure, confusing, and pain that you are experiencing. I am praying for you right now, that your doctors will be able to provide you with more definite information, and that you, Anson, and Roan will grow closer together as a family regardless of your baby’s future.
    ~lots of love from IN!

  6. I can’t imagine the anguish and thought processes you are having to go through right now. You are in my thoughts everyday and I am hoping for the best for you and your beautiful family.

  7. I started reading your blog a few months ago after following your brother’s for about three or so years (finally got to meet him when I rode in Philly last month). We live in the same neighborhood and probably have passed each other on the street or the playground more than once.

    I’ve never commented here before, but I just had to this time, to let you know that I am thinking and praying about your whole family. Maybe most of all for your Roan, because I have a seven-year-old guy and I can only imagine how tough that part of it must be.

    You’re doing everything you can, and you’re an amazing mom. Trust yourself, and cry as much as you need to.

  8. Big, big hugs to you and your family. I will be thinking about you and hoping those docs will be able to provide you with more info so you can make the best decision possible for you and baby. My heart goes out to you.

  9. Hi Jodi,

    I was forwarded your blog from a friend that follows you, that knows I’m always interested in hearing about genetic counseling.

    I want to thank you for sharing your experiences and the frustrations you’ve had these past days/weeks. It takes a lot to hear the news that you’ve been told, a lot of strength to comprehend as best you can what all the medical specialists are tell you, and an amazing amount of fortitude to share your experience with the world as you’re going through it.

    I’m glad to hear you have so many great people in your life to help you cope and support you through this process. As a medical professional, we always wish that we could tell you everything will be alright in the end, but unfortunately, nothing happens with that degree of certainty. What we can do is acknowledge that you’re in a really hard place right now, and that so much of this is confusing. It sucks, and no one wishes to be in that position, but as a person with a tremendous amount of resources, love, and support, you’ll get through this. And whatever the outcome, however tough it is to get to there, the things that are important to you will be there helping you through the process.

    Again, thank you for sharing what you’re going through. This might not amount to a lot, but you should know that hearing your experiences has helped me get a better glimpse into how real people get by, cope, and thrive when the medical information they’re given is both complicated and confusing.

    -Barry

  10. No matter what you decide, or where circumstances take you, I wish you strength for what follows and peace afterward.

  11. I’ve been silently reading for a while now but I just want you to know that I have been praying for you (whether you want me to or not) and am so hoping that you get the answers you need. Life is often painful and crappy. But I hope that you somehow can find the means to see that it’s never, ever your fault. Ever. And please cry. As much as you feel you need to do.

  12. Jodi, like Sarah I came to you through Eldon. I wanted to add my thoughts to those of all the other sisters/mothers above. I can’t even imagine how hard your life must be right now and, by the sound of it how hard your life will be with either decision. We are all here. Lean on us.

  13. I’m so sorry that you, Anson, and
    Roan are going through this. Beyond that, I don’t think I can say anything more wise and helpful than Kate did.

  14. Jodi – every ounce of positive energy I can muster will be with you and your wonderful family during this challenging time. Thank you for sharing with us.

  15. Jodi. I’m sad to hear this news. I would have thought you and your loved ones had had enough sadness to last at least the next decade… Apparently not. Grrrr…. I’m thinking of you, and hope that what ever you decide you’ll be at peace with yourself. It’s no use tormenting yourself with ‘what if’.

  16. Hi Jodi,

    It’s Claire your old frined from NYC. I have been reading you blog and I just wanted to let you know my thougts and prayers are with you. I am so sorry you are going through this. I cannot imagine how you feel, but I want to let you know that I am sending all my love and positive energy your way. I am amazed by your courage and strenght. I know that no one can help you make the decision that you and your husband are going to make. I just wanted to let you know to follow that beautiful heart of yours. As a mother, I am moved often by your blog and what a beautiful mother you are and your dedication to your family. So with that said I am sending love, prayers, positive energy and anything else I can think of your way.

  17. Dear Jodi,

    I really don’t know what to say, but it feels even worse reading this and staying quiet. I wish I had the words to make a difference.

    Big love,
    A.

  18. Jodi,
    I’ve been reading your blog for a few months, but this is my first comment. I wish you peace with whatever decision you make. I’m sorry that you and your family are going through this.
    Lisa

  19. No one should be put in your position, but you are. Any decision you make, you will question forever, either side that you choose. Try to take some consolation in the fact that your family, friends, and web friends are thinking of you, praying for you, and wishing that it would all just go away, that you could just wake up from it like it was a bad dream and continue on with a healthy-no-troubles-whatsoever pregnancy..

  20. Jodi, I am not very good with words, but I at least want you to know that you are in my thoughts and prayers.

  21. Jodi:
    So heartbreaking…my thoughts are with you, Anson, and Roan. I hope you can continue to draw strength from the people that care for you — both your real friends and your imaginary internet ones like me.

  22. Here’s holding out for a specialist who can bring more clarity… any form of words does not seem enough but hopefully knowing that the virtual friends you’ve helped love and laugh along with you at other times are right beside you now will help. Virtual hugs from across the pond.

  23. Jodi, Anson, Roan and the little one – My heart goes out to you. I don’t believe there are right and wrong answers here – as an earlier commenter said, listen to your heart and know that you are making the best decision you can make based on the information available to you. Wishing you peace and strength.

  24. Jodi, you haven’t failed anybody or anything. Far from it. I can’t believe how strong and amazingly together you are. Cry if you need to cry and laugh if you need to laugh. There is no right way to deal with this kind of dreadful scenario, you just need to follow your instincts and be with your family. Listen to the Dr’s and the specialists and ask as many questions as you need to. Miss and I will keep you in our thoughts.

  25. Jodi, you haven’t failed anybody or anything. Far from it. I can’t believe how strong and amazingly together you are. Cry if you need to cry and laugh if you need to laugh. There is no right way to deal with this kind of dreadful scenario, you just need to follow your instincts and be with your family. Listen to the Dr’s and the specialists and ask as many questions as you need to. Miss and I will keep you in our thoughts.

  26. Jodi, you haven’t failed anybody or anything. Far from it. I can’t believe how strong and amazingly together you are. Cry if you need to cry and laugh if you need to laugh. There is no right way to deal with this kind of dreadful scenario, you just need to follow your instincts and be with your family. Listen to the Dr’s and the specialists and ask as many questions as you need to. Miss and I will keep you in our thoughts.

  27. Jodi, you haven’t failed anybody or anything. Far from it. I can’t believe how strong and amazingly together you are. Cry if you need to cry and laugh if you need to laugh. There is no right way to deal with this kind of dreadful scenario, you just need to follow your instincts and be with your family. Listen to the Dr’s and the specialists and ask as many questions as you need to. Miss and I will keep you in our thoughts.

  28. Jodi, you haven’t failed anybody or anything. Far from it. I can’t believe how strong and amazingly together you are. Cry if you need to cry and laugh if you need to laugh. There is no right way to deal with this kind of dreadful scenario, you just need to follow your instincts and be with your family. Listen to the Dr’s and the specialists and ask as many questions as you need to. Miss and I will keep you in our thoughts.

  29. Jodi-
    You are the voice for so many mothers who hear the same things and think the same thoughts. I hope you keep writing as much as you can because you put into words what so many women are experiencing and feeling. Thank you for your bravery. My heart goes out to you!

  30. I don’t know you.. and you don’t know me.. but I wanted to let you know that I’m sending positive thoughts your way.

  31. Jodi-
    Thanks to Fatty I’m here reading. My family has struggled through pregnancy issues for years now and in some small way can understand your pain. Best thoughts to you and your family and I wish you clarity and strength throughouot this time.

  32. Pingback: Pistols and Popcorn » Sometimes Love Comes Around, and it Knocks You Down

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