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What Next?

February 21, 2012

To him who is in fear everything rustles.

It’s back. That crushing weight accompanied by that semi-permanent pit in my stomach. The fear of this unknown thing that seems to be stealing my daughter from me, bit by bit. I thought we were past the fear, past the constant worry of what the next blood test would reveal.

At one point she had lost her ability to suck – the only instinct a human being is born with, and she lost it. She became dehydrated to the point where were pumping fluids into her and put her through intensive feeding therapy, until slowly, finally, she started to drink on her own. That was a year ago. But, she got that one back, so it didn’t “count” as a true regression. Good.

Then she lost her words and her signs. I think in my head I tried to attribute those losses purely to autism.

But now, she has lost another skill, the ability to point her finger to push a button or point to a picture- another regression. This might seem like a small thing, but without words and signs, pointing to pictures is her only means of standard communication.

I talked to the doctors today. The current belief is that she has started having seizures – and they appear to be becoming more frequent and more obvious. They look like absence seizures, but they are coming with more frequency. More tests are being scheduled.

I can’t shake this feeling that something sinister is happening inside my precious girl. A storm is gathering, and picking up strength. Without any diagnosis, I feel powerless to do anything to protect her from it. All the regressions, and now possibly seizures. It all points to that thing that the doctors keep bringing up, but can’t seem to prove. It all points to something progressive.

My brain is constantly in hyperdrive, trying to piece together little clues that might have some relevance to a diagnosis and hopefully a treatment. I keep telling myself, we have ruled out most of the really scary stuff.

But my mama gut is telling me something is not right here. It’s that weight, that sickening knot in my stomach, that just keeps twisting and tightening.

What will she lose next?


6 Comments leave one →
  1. February 21, 2012 1:35 am

    I am so sorry to hear your pain. Your eloquent writing clearly describes your anguish. Momma “gut” instincts are rarely wrong. Keep up the fight for your daughter, she needs you!

  2. February 21, 2012 3:18 am

    Little Miss Mary is so adorable! That picture melts my heart! I know your fear. I have sat clenching my little black note book. It’s the notebook I keep all my questions and doctor comments in. I have sat looking through hours at a a time hoping something will come to me, hopping I can make sense of something that the doctors have over looked. All the while time feels like it’s slipping away. The gut feeling that a “storm is coming” is sooo
    Familiar I told my husband the week before Adam got hospitalized, “somethings coming I feel it.” and sure enough.. It was the worst seizure he’s had yet. It’s like a blessing and a curse- that “gut” feeling. I think if you read my post “You can’t have my child” you will really relate. It was to seizures but it can apply to any illness that a mother so desperately wants to protect her child from.
    I just really want you know that my heart goes out to your family.. And you are not alone. 🙂

    • February 21, 2012 3:21 am

      Thanks! I did read that one- breaks my heart to see your little one like that. Praying for you guys. ❤

  3. February 24, 2012 1:43 am

    I will keep you in my prayers.

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