Thursday, 23 January 2014

After the MRI

You'll have to excuse me if what follows is incoherent and all over the place. I'm all anxious, hepped up nerves, and yet don't seem to find any energy or concentration for even the simplest tasks at the moment.

The short version is, the MRI didn't go well. Although they didn't find any further anomalies or missing anatomy (a risk with this diagnosis) and in that respect the report was consistent with the u/s last week, little seedling's ventricles have increased in size in a matter of only five days, a rapid progression of her condition that means the 'this might be nothing' scenario is no longer likely in our case. Of course, we still don't know what it actually might be. But suddenly, things like C-section delivery as early as 32 weeks and/or the need for neurosurgery only hours after birth are being discussed...still without any indication of the long-term prognosis (which could, at this stage, include major medical needs and/or developmental delays).

It's all so fucking overwhelming and terrifying. I've gotten so used to all the poking and prodding and invasions of my own body through the course of my life - not only in dealing with loss and infertility, but long before that with years of cancer and orthopaedic treatments. I can undergo whatever unpleasant procedure, for myself, of my own accord, without batting an eyelash. But the thought of my sweet girl having to experience even a moment of pain or suffering, never mind spending the first weeks or months of her life in a NICU, have been keeping me up sobbing every night this week. H says that we need to focus on the here and now, the positives in front of us, and not let our fears run away with us, and he is right. But it's such a struggle right now, every minute of every day. 

When we lost S, one of the only comforts available to me was the knowledge that he had slipped away quietly and peacefully, like a whisper. He didn't suffer, and inside my belly he was so surrounded by love and hope - all we had at the time, before everything went to hell in a hand basket. I'd like to think he felt, exclusively and intensely, that love and hope. There was no time for us to grieve or worry until he was already gone. But now, with his little sister, I can't stop thinking about how hard this all is on her,  the possibility of her having to come so early and be vulnerable and live in a hospital bed; all the pain she might have to experience only moments after birth, and perhaps even for a lifetime. The stress I am placing on her now when my nerves take over. The fear that is was something my crappy body did, the awful, disfigured genetic legacy I seem to pass on to all my offspring.

I've had literally dozens of MRIs in my lifetime and never thought twice about them. But this week, inside the dark narrow tunnel as the magnets whizzed around us and I felt her moving in protest at the weight of the restraint they had placed on my belly, I worried irrationally at the risk this might pose to her. Such a small but significant reminder of how perspective and relative position can change in the blink of an eye. I think of how my own mother coped with seeing her child undergo numerous life-threatening treatments. In my teens though, I was the kid who mysteriously overcame a terminal prognosis in my very aggressive and recurring cancer. The miracle kid.

Not for the first time, I wonder if perhaps asking for more than one miracle in a lifetime is just too much.

It is un-fucking-believable to me that we could overcome years of pain and loss and heartbreak to finally be given hope only to have it cruelly snatched away again for a whole new reason completely unrelated to infertility and loss. All that familiar pain we've become expert at, I know how to deal with it; this feels like terrifyingly new territory. I am among the 1% of women who experience three consecutive miscarriages without a live birth. And now, in another random turn of events, our long-dreamed of miracle baby is facing a condition which affects only 0.1% of babies. Really? Wasn't one of those terrible odds enough for us to deal with, you nasty, bullying universe?!?

I'm angry and sad and terrified at a time when I am supposed to be enjoying the growing life within me and looking forward to a happy future. I can't do this again. I can't lose her too.

I'm also thinking about calling time on this blog, at least for now. I feel so far outside the curve of experience within this community that I'm not sure sharing here offers me much comfort at the moment. And if I'm truly blunt about it, it makes me really uncomfortable to potentially be that person others look to when they think to themselves it could be worse. (And it makes me dislike myself that I even think those things.) But clearly people don't know what to say. My last post, on the diagnosis, has quickly become the third most read post my blog has ever seen. Upwards of 500 views, and yet so few have actually stopped to offer a thought. (And for those of you who have, I continue to say, your love and support right now are so felt and appreciated.) But likewise, I don't feel like I can offer much in the way of support to others right now. All the ugly envy and anger and complete inability to engage with happy stories has resurfaced, and I need to work hard right now, for little seedling's sake, to focus on positive energy. I'll probably check in with any big updates, but right now it's all too much and while in the past this space has been a wonderful outlet for processing my tangled thoughts, I'm not doing a good job of articulating myself anyway. I'd like to think there may be some function, at some point, for this space to offer comfort to other parents who are searching and feeling afraid and alone.

I feel very much alone and so so scared. But H is right; right now I need to concentrate all my energies on hoping for my baby girl, drawing as much love and good energy around her as possible, and relishing her every kick and whirl and her regular growth, which seems unimpeded by her condition. As hard as this is for us, it's she who has the biggest job to do right now, and we need to believe in her and offer her calm and strength. And you all said it best: she is a fighter, our daughter. Our daughter; it still feels like a miracle that I get to say those words.

And so we wait. And we hope. Because there's not much else we can do.
 

62 comments:

  1. I'm so sorry the MRI wasn't more positive. Please know that even if you step away, you will have people thinking of you. If your daughter is anything like you, she is strong and can handle whatever is thrown her way. (Hugs)

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  2. Thinking of you and abiding with you

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  3. Please know that I will continue to pray for a safe, complication-free delivery and complete healing for your precious baby girl!
    Angie Dorman
    Grand Rapids, MI

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  4. Sadie, I can only imagine how overwhelmed, angry, scared and nervous you feel right now. I'm sure nothing I say offers any great peace, but please know that I'm thinking of you and your family daily. Whether you keep up on this blog or not, whether you keep up with mine or not, you are in my thoughts. Do what you need to do for you and your family...whatever that is.

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  5. Oh Sadie, I'm sorry. I wish I could do or say something to make you feel better. I'm so glad you have H right now-- he sounds like a strong, positive person and I know that is exactly what I would need if I were in your position.
    The waiting for answers is so hard. And you're right-- this is all so unfair. You've been through enough. You deserve for this pregnancy to go well and for your daughter to be born healthy and happy. And I know there is still lots of room to hope for that outcome. I'm hoping for you. And for her.
    Do what feels best to you in terms of blogging vs. not blogging. No matter what, you and H and your sweet little baby are in my thoughts. xo

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  6. Oh Sadie, I know your little girl will feel surrounded by hope and love no matter where she is, in the NICU or home with you--she is your little miracle, and I have no doubt that her little body can sense how much she is adored and longed for. Please know I have been praying for you. I still believe in my hear that this is going to have a happy ending. I think if you need to take a break from blogging, there's absolutely nothing wrong with that. Your reasons make complete sense, and I would feel the same. I will miss reading your posts, but I will keep waiting for that day with the joyful update. I may check in with you by email some if that's ok :) You are so loved, and your little girl is so loved.

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  7. I can offer no beautiful words to help, but please know the 3 of you are in my thoughts and prayers.

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  8. I am so sorry you are going through this. I think you thoughts are very coherent. Your daughter is surrounded by your love and hope, even if you don't always feel it that way. She will be while you're pregnant, and when she's born, no matter when that is. If you need a break for you, take one, but don't abandon this space for anyone else.

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  9. Thinking of you and your precious miracle baby, stay strong and love her.

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  10. I wish there was more to say to comfort you. I'm so sorry you have to go through this. You and your daughter have both been so strong and gone through so much already. Whatever you decide about your blog, this community will respect. I hope that you have found some comfort from your readers and that you can feel a little less alone. I am thinking of you and praying for you and your daughter. I hope so much that you can update us down the road and tell us that you are both doing well. Take care, Sadie.

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  11. I am do incredinly sorry that you have to go through this. After everything it has taken you to get here it just seems so cruel that life is throwing more stress and pain your way.

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  12. I am so sorry that the ugly horrible universe is doing this to you, your husband, and your daughter. I am so angry and sad on your behalf. I am so sorry. I don't have any words of wisdom -- you're right, in that few possibly could, given the odds -- but I am certain that your daughter feels your love for her intensely.

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  13. My thoughts are with you and your little family right now, while also hoping you have your own safe space of that love and protection. Whenever you are ready, if you are ever ready, to come here and write again, I'll be there to cheer you on. In the meanwhile you and your little lady are in my prayers. I’m so sorry this all has to be so hard. ~Catherine

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  14. I am so sorry. My thought are with you.

    Wishing you all strength.

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  15. Sending you and your baby girl lots of love. I wish I had magical words that would help right now, but I am at a loss. Please know you are all in my thoughts and prayers.

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  16. Sadie, I am so sorry that the MRI showed that there was progression. I am still sending the love and the warmth and the energy to all three of you. A few things. This is not fair. It's horribly unfair. Second, I want to shake you and hold you simultaneously for your comment about your genetic legacy. I get it. When we are searching for answers and feeling out of control, we can exert control by blaming ourselves. But, I'm sure I'm echoing H here when I say that you cannot do this to yourself. Take it there later, if you must. But right now you have plenty of other things among which to spread your energy. Third, blog or don't blog or blog once a month or once a year. I've had a similar reaction in the last few days - I just can't read these right now. I suppose I'll keep going as long as I keep getting something out of it and as long as I feel well enough that I can do more than preserve my own self. Right now, preserve your own self. Give your firecracking fighter girl all the love and preservation you can muster. And know we are thinking of you.

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  17. Oh God! This is so unfair. I'm so sorry you are facing this. I so wish I take this pain and anguish away and shoulder it for you so that you can just breath in every moment of this glorious pregnancy with your sweet baby girl. Please know that your family is in my husband's and my prayers daily. And I know this is cheesy but... White light of the holy spirit please surround this sweet baby girl with all your strength and love, and please lay your healing hands on her in this time.
    I said this prayer everyday as I rubbed my belly with my first pregnancy. (many bad health issues) for some reason just saying it brought me peace and hope. Maybe it will you as well. (and I'm not an overly religious person, but for my baby I prayed) And for yours I will too.
    Sending you warm thoughts and strength.

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  18. I am sorry I haven't been around much. I haven't been around much anywhere, not in my own blog either. Returning to read your news now I want to hug you and wish I could make you feel less alone and less scared.

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  19. My heart is breaking for you. This is so unreal and so utterly unfair. The odds of what you have been through, adding this, blows my mind. To know your baby might need medical care and surgery shortly after birth is so so scary. And her having a diagnosis that is so uncertain at the moment must be terrifying.

    You know what you need to focus on, no question about it. It's ok to write whenever you want to update or feel the need to, and to receive support even though you can't give much back at the moment. That's totally understandable.

    I'm sending so much love and healing to you, H and your sweet baby girl.

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  20. I'm so sorry you're going through this.

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  21. I wish I had some words of comfort for you. Everything you say make complete sense. I think H is right, hard as it is, the challenge of focusing on the present instead of worrying about the future, is the way to go -- but it's a fine line to walk, because you also need to plan ahead. If that means taking a break from blogging, then that is what you must do.

    Sadie, this is all beyond unfair. I agree, I agree, I agree, the blows have rained down hard on you. I'm just hoping the miracle kid has a miracle kid. If there is any balance or order to the universe, I feel that is possible.

    I wish I could come over and bring you tea and chocolate and do your laundry. For now, a virtual hug will have to do. So much love xo

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  22. I am so, so sorry Sadie. There is nothing I can say right now that will do justice to all your feelings or feel like enough - you are tremendously strong, this is tremendously unfair and shitty and that little superhero kiddo of yours is so very lucky to have you and H in her life. Whether you decide to stay in this blogging space or not - and your reasons for taking a break are totally valid and understandable - just please know that I will be thinking of you, H and your fighting little girl often. Sending love, hugs, hard liquor (kidding…) and positive thoughts.

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  23. I am so sorry. I wish I was as was as eloquent as you are but unfortunately I am not and I don't know what to say other than I am thinking of you and as always, sending you all so much loving positive thoughts. I totally understand why you may need to take a break from writing - I know I've had to from time to time. I will certainly miss you though! Please take care of yourself, each other and of course your sweet, strong baby girl. xo

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  24. Ugh, I simply cannot imagine what you're going through. You're right, it's so unfair - after everything you've been through, it should really be nothing but smooth sailing. I'm so sorry that's not the case. You're right to focus your energy and attention on your sweet little girl. We'll be here when and if you need us, rooting for you both from the blogosphere. Just know that you're in my thoughts. I'm rooting for all three of you, and praying that everything turns out well.

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  25. I am so very sorry. Thank god she is YOUR baby girl because if she's anything like her mother, she will be a fighter! I am sending constant good thoughts your way. big big hugs.

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  26. I'm so sorry to read about the stress and pain you are going through as you process all the test results and uncertainties of the future. I wish I could do something except join you in shaking my fist at the nasty, bullying universe. I do think Annie is right; your little girl will know she is loved no matter where she is. And I believe that wherever there is love, things are always better, never worse. Do whatever you need to do to take care of yourself and your family.

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  27. Oh, Sadie, I'm so sorry for this whole shitty, unfair situation. I can't even imagine how hard it is to stay positive and focused on the present. But I'm so glad you and H have each other to lean on, and I know your little girl feels every bit of love and hope the two of you have for her. Whether you update here or not, I'll be thinking of the three of you and sending lots of love and hope for the best possible outcome for your little family.

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  28. I am so sorry you are having to go through more worry and stress. But your and H's strength is remarkable and together you will hold each other up during any challenges to come and celebrate the victories that I pray are ahead for you and your resilient little girl.

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  29. Waiting and hoping with you! And pissed at the universe for you. She is a fighter and so are you! We will be here for you if you decide to continue blogging and will understand if you need a break

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  30. I'm so sorry this is happening to you, Sadie. As you pointed out, it is so completely and utterly unfair. You've had your share, more than your share, of difficulties, and if the universe is listening, I hope it hears me saying "Sadie has had enough of these shenanigans, so knock it off." I am hoping against hope, and sending all my positive vibes that your little fighter will fight her way through this. And that you will continue to find the strength to help her. And I definitely get where you're coming from on wanting a break from the blog, on not wanting to be the worst case scenario. Take your time, and know we are all pulling for you. Channel all your thoughts into positive and good energy for your baby girl.

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  31. I am so, so, sorry for all that you are going through right now. Yes, the universe is just so unfair sometimes. Please know that if you need to step away, this community will respect that, but also know that much love and hope will continue to be sent your way as we root for that precious daughter of yours. Please do what you need to do to take care of yourself and know that you will continue to be surrounded with love and energy and prayers and hope-

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  32. Swearing on this end, Sadie. That you are going through this, having to face this scary future makes me want to drag the universe into a busy street, kick her in the teeth and leave her to face the oncoming cars. I'm so sorry you are having to deal with this. I wish I could tell you the exact right thing to make you feel better as well as ensure that all would be well. What I can do instead is let you know that you are not alone in this. So many are here to support you. Those of us who have lived through NICU are hear to listen and help you navigate the experience. And I have faith that there will be another miracle. That your baby girl is a fighter like her mama and will leave all of us in awe.

    Thinking of you. Contact me if you want to talk.

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  33. Oh no. I'm so very sorry to hear this. I don't even know what to say.
    Sending so many positive thoughts your way.

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  34. Oh Sadie, how I wish I could say something or do something to make even a small piece of this journey easier. This is so unfair. So shitty. I can only imagine how scared, sad and angry you must be. But I am holding on to hope that a beautiful miracle is about to unfold. Thinking of you every step of the way.

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  35. Sadie, you're in no way incoherent, even if it feels that way. I can hear just how deeply, unbearably painful and scary this all is, and of course it is! It's SO fucking unfair. Yes, by all means focus your energy where it can do the most good now. Just know that, whether you write here or not, many people will be thinking of you every day -- not with relief that we're not in your shoes, just with love, respect, and (bruised but still tenacious) hope. Holding you and your daughter in my heart...

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  36. This fucking sucks and I am so sorry you are having to deal with this. It's so unfair and I am pissed at the universe for you. I totally understand your need to step away. You need to focus on your daughter. I'll be thinking of you and hoping for the best for you and your family. Know we are all here for you if/when you decided to come back to your blog.

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  37. Sadie, I am SO sorry for this bad news. I can't imagine how unbearable and overwhelming all this is. But know that I have had such a good feeling about this baby from the very beginning. I truly do believe that your little miracle will be okay and that you will have the family you've been dreaming of. Sending you love and hope always! <3

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  38. I just want you to know that you are in my thoughts and I am hoping very hard that all turns out okay for you and your baby. I don't know why such torture happens to good, loving people who've already been through so much. XO.

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  39. Just sending more hugs and thoughts your way today

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  40. This really really effing sucks! But know you're in my thoughts and prayers. I may not always comment because sometimes I don't know what to say. But keep your chin up and keep praying that's all you can do sometimes and by the grace of god your baby will be healthy and happy

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  41. All I can say is I am sorry. I am sorry for all of this. I am thinking of you and praying for your little baby girl. You are correct that I didn't know how to offer support;so didn't. You are outside of my experience but I still think of you and hope for the best for your family and am sending you prayers and support. I will do so more vocally (writtenly).

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  42. Oh, Sadie, I am so sorry. My thoughts are with you, your husband and your much loved little girl. I can only imagine what you're going through, but my heart goes out to you. Send all the good energy towards that little girl. I hate that odds are still playing against you. It's just not right, after all you've been through. Take care of yourself, as much as you can.

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  43. I'm here from LFCA. All of us in the ALI community are thinking of you and your sweet baby girl.

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  44. I'm so sorry the MRI wasn't better news. Thinking of you and your little girl.

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  45. I'm so so sorry....life is not fair. :(.

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  46. Thinking of you and your little girl

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  47. I hope commenting puts your mind at rest that readers are hugely supporting what's happening and wishing every good thing for you and your baby. xx Please do continue to write x

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  48. just catching up with you. And UGH - I am so sorry to read about this turn of events. So freaking unfair. I am so so glad that the MRI didn't turn up any other anomalies. That is very good news, but geez, this is not ok! I call time out! Redo!

    Do whatever you need to do to care for yourself at this time. I hope that you can find and feel support here and hopefully find others who have been through this diagnosis with a good outcome.

    Thinking of you. Hoping with you. And wishing you weren't faced with any of this.

    Mo

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  49. Am normally a lurked but just wanted you to know that I'm thinking of you and your family. So hideously unfair but I am certain you will be exactly what your daughter needs you to be- strong and brave and full of love. x

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  50. Sending hugs and support. I have no idea what to say, but I want you to know I am sending love.

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  51. Here from LFCA. I've been debating whether to comment or not. I am so, so sorry that you are going through this. My son Noah also had enlarged ventricles. Our story did not have a happy ending, but I know others with this condition who did. I will be hoping and praying for you and your little girl. If there is ever anything I can do, if you ever want to talk,please don't hestitate. Thinking of you.

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  52. Also here from LFCA. I am thinking of you and your beloved daughter and sending you all the strength and love I can. Do whatever you need to do to get through this, take care of yourself and your little one. She is loved, you are loved and you are not pitied. I hated feeling like I was being pitied. The universe is so incredibly random and unfair. I am praying you beat the odds.

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  53. I'm so sorry the MRI didn't provide better news. Sending you and your baby girl much love and positive energy.

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  54. I also found your blog through LFCA. Hoping and praying for your little girl.

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  55. I hate the very idea of you enduring an MRI or crying at night. I have come to care about you so much. Please know, I am sending you so much love and hope. I believe in you and I believe in your daughter. xoxo

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  56. Sadie, I've been away from blog reading and I'm just learning about both your pregnancy and this loop you've been thrown for at the same time. I was so excited to discover you are pregnant and I am holding your hand and sending strength and hope. You are a tough strong mama doing a wonderful job for your baby girl. XO

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  57. Just a note to say, still thinking of you. Hugs.

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  58. Hey girl. I just saw this post. I just want to give you hugs and tell you that I'm thinking of you. *Hugs*

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  59. I nearly never comment on blogs, but i want to tell you how much i'm thinking of you. S

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  60. You are so brave. Love and hugs coming from every corner of the Internet. Thank you for sharing your story, if for no other reason than we can be there with you to hold your hand.

    <3

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  61. Still thinking of you and hoping you are feeling the support of this community and that in some way, it helps a small bit - and always sending hope

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  62. Keeping you in my thoughts and prayers. I think people don't always comment because they don't know what to say. I don't think it is "it could be worse" thoughts. However, you and your little girl are warriors. And I know you will get through this battle. It's certainly not fair, but you will make it through.

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