If’s and Fleeting Moments

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Today, I discovered that someone used the search term ” i have spina bififa occulta with a tethered cord and the doctors dont understand how much pain im in” and found my blog.

I tx’d for spina bifida – myelomeningocele, but it’s a gray area. Occulta, from what I understand, is the least “serious”.

If you are a child, surgery to untether is fairly common, but once you are an adult (or have an adult sized body), it becomes a controversial surgery.

It just kind of shocked me this morning, because when I started my blog, my biggest fear was that someone with SB when find it and be horrified with my decision.

And yet today, I’m ok with it.

If I had CTT, I would have been induced at 37 weeks around May 15th. Yes, I could have been cuddling my daughter right now, but I could also be planning her funeral. I’d probably be living in the Ronald McDonald House, near the NICU. I doubt I’d be at work right now.

And yet today, I’m ok with it.

Today has been the first day that I felt that I did something brave and good, that I saved my daughter from suffering. Today, I really feel that I performed my first selfless act on January 2nd.

I (and others) have been saying these things for months now, but today, this morning, I really, truly believe them.

I love my daughter with all of my heart. I miss her terribly, but for today, at least, I am not going to dwell on the what-if’s, because no matter what happened, I was not going to have the TLC Baby Story happy ending.

The weirdest thing that is that it took Game of Thrones to help me make this realization. My mom is in for the weekend, and she brought my books back. I started thinking of Jamie Lannister this morning, and his nickname of Kingslayer, and how he feels about it (and his actions that earned him the nickname).

And I found myself identifying with him. Other people may judge me, and it certainly wasn’t an easy decision to make, but I know why I made it, and I am relieved that I made it. My daughter will never know pain. She will never have to take narcotics as in infant. She will never have to find comfort on Google because it is too risky to have surgery to relieve her chronic, severe pain.

I had been dreading June 5th up until today, when I realized my my EDD had actually already passed. I was still mourning the loss of a healthy child, thinking that I could make it to 40 weeks. I think what happened with me (and is still happening, I’m sure) is that I went through multiple periods of grief. First, I grieved for my daughter, for my family, for myself and my husband, and lastly, I think I grieved my idea of what a pregnancy should be.

Up until now, I’ve struggled with the idea of loving another child as much as I loved her. How could I honor, the very person whose life I ended, and have another child who wasn’t defective? But that’s not why I terminated – I didn’t expect or need perfection. I did it for her.

So, for today at least, I can say that I miss her and not cry. I can smile because she is not in pain. I can forgive myself because I don’t hate myself.

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3 thoughts on “If’s and Fleeting Moments

  1. I hope I feel this way soon. One year since tx is approaching for me soon and last week was pretty awful. Glad to see your post today.

    • I really think my breakthrough was when I made the realization that June 5th (my EDD) holds no special significance to me. No matter what, I wasn’t going to make it to 40 weeks. I know that I will have bad days, but I really want to celebrate and focus on the good.

      Hope you get more good ones than bad ones!

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