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August 14, 2013

“The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown”
― H.P. Lovecraft

I just got a call from the hospital. My stomach is in knots. Those tests – the crystal ball tests as I keep calling them- are almost done. They will be done by the end of next week. Once the hospital looks at them, they will call me with the results.

We’ve waited a long time for this. Three years of genetic testing and medical drama. This is the holy grail of genetic tests. Her entire genome. It won’t necessarily rule out everything, like mitochondrial disease, but this is our best chance of knowing what is going on with our baby girl.

I am scared. Like really, really scared. Much more than I thought I would be. I told myself after all they have thrown at us, all the death sentences handed out and then retracted; all the degenerative progressive, fatal diseases they thought she had that she didn’t; how many times they have reassured me that despite their initial presumptions, no she does not have cancer at this time…. Really, how scary could this test be?

Terrifying. That’s how scary. Final and conclusive results about things that we don’t even know we are looking for.

I know things could be worse. I know things are far worse for so many other children. I know she will still be the same perfect little girl with or without a diagnosis. But dammit, right know I am just plain scared. My husband is on a trip and I’m home with my three perfect babies, and I can’t afford to lose it in front of them right now. So I’ve snuck off for a moment to you, my friends. Because you have made this my safe place, and I am beyond grateful for that. Because I have to tell someone, I’m just not as strong as I need to be right now. I need someone to say a little prayer that I can make it through the next two weeks, because there is just too much happening right now. Insurance meetings, treatment plans, hematology and neurology appointments, oh, and that teeny tiny thing of school starting next week…. No, this would not be a good time to fall apart….


8 Comments leave one →
  1. August 14, 2013 7:44 pm

    Hugs. I can’t begin to imagine how that must feel, the waiting and the knowing you will know soon after so long. You will find the strength you need because that is just what we do, we find it somehow, somewhere when we don’t think there is anymore left. It’s in you, mama, you are strong. I so understand that feeling, of coming *here* and finding what you need, the support from a total stranger, the releasing it into the universe. I get it. I am glad it gives you solace and I will say that prayer for you. xo Linda

  2. Life&Ink permalink
    August 15, 2013 12:04 pm

    Erin, I echo Linda’s words. I am here. We are here and so is the strength. That’s the power of strength. You can’t see it but you can feel it and it is there when you need it. It will sweep you up, yet hold you down precisely when you need it. I will be sending you thoughts of strength. Hug your perfect babies and immerse yourself in your love for them. All my best. Charlotte

  3. August 29, 2013 5:04 pm

    Would love to connect with you – found your blog through TGen’s Center for Rare Childhood Disorders. My name is Sara. Eaton

    • August 30, 2013 12:59 am

      Hi Sara. Thanks for stopping by. I followed your link, but was unable to find a way to email you directly. Feel free to email me privately : superbiologybabe at hotmail dot com. (Feel free to laugh, my husband made up the email back when I was a biologist before kids… 😉 ) I look forward to connecting with you. Thanks again.

  4. therocchronicles permalink
    August 30, 2013 4:10 am

    I hope the last two weeks have gone better than you had hoped and that the start of school went smoothly. Sending good thoughts your way.

    • August 31, 2013 2:29 am

      Thanks. The start of school has certainly been a welcome distraction. 🙂

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