That is Not my Struggle

May 24, 2011

I feel the need to clear something up. It is something that is just laying heavy on my own heart. I am not being defensive; this is just something I feel needs to be put out there.

This baby is 100% wanted and loved, regardless of any disabilities, differences, or difficulties that may come along with that. I desperately want to be given the opportunity to be a mom to this baby, to love her, to raise her, to encourage her, despite any difficulties or challenges that may come along with that. I am 100% appreciative of all the wonderful, personal stories of your own children or people you know that may have had a similar diagnosis/situation. Please don’t stop sending them, it is encouraging to me, and I reread many of the messages I have received over the past week daily. 

But… that is NOT my struggle.

I struggle daily with the fact that the chances of this baby being given an opportunity to even live are slim at best. Do you know what its like to be carrying a baby around in your body 24 hours a day as a part of yourself that has been given a death sentence? It’s horrible.  It's exhausting.  It's dark and depressing! It NEVER leaves your mind. NEVER. Brutally honest - It is by far the worst place I've ever been in my 34 years.  I am constantly monitoring movements, and when I don’t feel the baby for an hour, I start freaking out. It’s really a horrifying place to be. Constant fear, 24 hours a day, 7 days a week.  It makes for one exhausted, drained, and crabby person.  Some days I wonder how I can continue like this.  It makes every day a constant struggle - A struggle for hope, a struggle for just finding a few moments of peace. 

Yet, somehow in a haze, I have made it through the last 12 days.  Some days I really don't know how, but I am happy I have made it 12 days, and I know I have 9 more days left until the next ultrasound, where my expectations will again be reset.  I am both terrified and longing for that day.

I love this little girl… no matter what.

I wish my love and pain could fix her, because I have so much of both.  I wish I could fast forward to a further point in my pregnancy where it would be safe for her to be delivered, so doctors could help her better.  Right now I can't fix anything, but I do know that I am not one bit fearful of a future of raising her, I am fearful of a future without her at all.

That is my reality… and so I sit and wait for the unknown.  Knowing there are so many thoughts and prayers.  Feeling all of your love, and at the same time feeling VERY VERY alone.

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15 comments

  1. Alison at Wardrobe OxygenMay 24, 2011 at 7:38 AM

    Oh honey, I have been such a slacker in keeping up with blogs and just see this. I am so sorry. You and your family are in my thoughts and prayers. Sending strong, healthy vibes to that little girl in you. <3 and hugs...

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  2. AnnMay 24, 2011 at 8:15 AM

    I dont have any advice, but I do have lots of thoughts, prayers, and love for you!! Hoping you can find some peace.

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  3. LutherLizMay 24, 2011 at 9:41 AM

    Thinking of you and that tenacious little girl of yours each day. Prayers and peace friend.

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  4. safireMay 24, 2011 at 9:52 AM

    You don't have to explain yourself to anyone. I can't imagine what you are going through. I think it's incredible how much strength, love and thoughtfulness you are showing now.

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  5. Jessica KokMay 24, 2011 at 10:21 AM

    And that's what makes you a wonderful mother, my friend. Praying that you get to mother her after she's born too.

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  6. KariMay 24, 2011 at 11:18 AM

    (I'm hoping this isn't posting twice...)

    Thank you so much for being so honest. I have no idea how you must be feeling. Know that I am praying for you and your little girl.

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  7. LaraGMay 24, 2011 at 12:11 PM

    I am so sorry that you have to go through this. I suffered a loss 6 months ago, so I can relate a bit to the pain that you are going through. The worst part of it (besides knowing that you might not ever meet your child) is the insensitive comments people make under the guise of 'being helpful'. Since when are comments like'It's not meant to be' and 'You wouldn't want to deal with the disabilities' considered helpful? I would have given anything to have time with my child, problems and all.

    The most helpful thing people can do is shut up and listen, and never judge. I hope that you will continue to be strong during this difficult time.

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  8. SeattleRunnerGirlMay 24, 2011 at 3:04 PM

    I don't think anything we can say will make you feel "better" or less alone. Maybe, just maybe, knowing that we all care and are praying for you AND your little girl...well, maybe that brings you some comfort when you need it and that's what we're here for.

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  9. Sue ZMay 24, 2011 at 4:59 PM

    I am so sorry for your pain Sarah ... I can't even imagine what the burden is like that you are carrying. I will continue to pray for you and your precious little girl. I can understand your feeling of helplessness ... as moms we always want to help and protect our children. You can't do that in the classic sense, but you are doing it by praying for her and hoping for her and sharing your concern with others who can pray for her as well. Plus, you have worked very hard to give her a healthy body to reside in ... you are doing all that a human can do to preserve this sweet baby's life.

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  10. Sarah GMay 24, 2011 at 5:39 PM

    ((Sarah))

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  11. NathalieMay 26, 2011 at 5:22 PM

    Just seeing this today. . . I wish I could do more than empathize. . . I do understand though, when you say that you're not scared of raising her. . . Since I was diagnosed with having a balanced translocation, I knew that both Isabel and this Baby Girl I'm having now could have a number of genetic abnormalities, and every time the doc asks, I tell them I don't want the amniocentesis, I don't want the Down's Syndrome test, all of that. I'll take what comes. I did want to tell you about one person though. . . My very best friend in the whole world was a twin, and they didn't even know she was in there. They expected her sister, Lee, but not her. However, when she and her sister were born, they found Faye, fully whole and perfect, and Lee, who had so many problems that if they were to have had the technologies they did now, she probably would have received a death sentence before she came out of the womb. She was given a life span of maybe 6 months at most. Lee lived until 26, she got to see her sister get married, and she was one of the most mischievous people I ever knew! I hope this doesn't make you sad, I just wanted you to know that sometimes that "death sentence" is only based on what drs can imagine, and what really happens is totally different. I'll be praying for you and her.

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  12. HeatherDecember 5, 2012 at 4:33 PM

    I don't know how regularly you are still checking this blog. It was pointed to me by a friend. But THIS speaks to me so much. I am 13 weeks pregnant, and a week ago, our baby was diagnosed with Turner's via CVS. I'm reading your blog now, but this one was soooo relevant to me right now. Thanks for sharing your experience on this blog, because even know over a year later, it is helping me!

    heather henderson
    germantown md

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  13. HeatherDecember 5, 2012 at 4:34 PM

    I don't know how regularly you are still checking this blog. It was pointed to me by a friend. But THIS speaks to me so much. I am 13 weeks pregnant, and a week ago, our baby was diagnosed with Turner's via CVS. I'm reading your blog now, but this one was soooo relevant to me right now. Thanks for sharing your experience on this blog, because even know over a year later, it is helping me!

    heather henderson
    germantown md

    ReplyDelete
  14. HeatherDecember 5, 2012 at 4:34 PM

    I don't know how regularly you are still checking this blog. It was pointed to me by a friend. But THIS speaks to me so much. I am 13 weeks pregnant, and a week ago, our baby was diagnosed with Turner's via CVS. I'm reading your blog now, but this one was soooo relevant to me right now. Thanks for sharing your experience on this blog, because even know over a year later, it is helping me!

    heather henderson
    germantown md

    ReplyDelete
  15. EricaJanuary 23, 2018 at 12:11 AM

    I know I'm here years late and you may never see this, but thank you for sharing. I am 14 weeks with my angel girl who was diagnosed 3 weeks ago with Turner syndrome. I feel so alone even though I have an amazing support system of family and friends praying for us and doing their best to support us. I feel guilty for every feeling I have. I don't know what to hope for. All the doctors have been so sure that we will lose her. I try to come to peace with that and fail because I know there is a corner of my heart that just won't let go of her while she is still kicking and growing inside me. Last Wednesday,on my birthday, we went to our first ultrasound since getting the blood results back confirming Monosomy 23. The doctor tried to prepare me for her to already be gone and I thought that's what I was expecting. But she was still kicking and wiggling away. I had a strong impression that she just wasn't ready to leave us yet. Sorry, I'm rambling now. What I wanted to say was thank you for sharing. I feel better knowing that I'm not the only one who has been in this horrifying limbo of being pregnant, but not sure for how long and what the results will be like.

    ReplyDelete

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