Rambling – Heartbreaking Decisions

Sarah is becoming more and more dangerous as she grows. A 2 year old in a 10 year old’s body has the power to fight back and hurt herself and others.
Today I put her in a timeout in her room for punching her sister, and a few minutes later the neighbor frantically rang our doorbell to tell us Sarah was hanging out of her window.
18 feet up with nothing but concrete below she knocked out her screen and was mid vault out of her window.

She does not have the intellect to understand danger or death. We nicknamed her danger baby when she was younger, and it was cute, but now it’s no longer funny.
We put another deadbolt high up on the front door, and she used chairs to reach it. Sugar is bad for her system and her seizures, yet tonight she produced an opened rootbeer and handed us the bottle cap.

Baby latches and regular safeguards are becoming ineffective as she’s simply too strong, and has enough intellect to problem solve, but not enough understanding of fear or death. Also since she can’t talk and only has the intellect of a two year old she has horrible behavioral issues. She throws food, she screams, she hits people, (strangers and family). She has hours of behavioral therapy daily, and with daily training she has not improved.

If SUDEP doesn’t take her, a fall or car accident will, she simply doesn’t understand. And the more we try to protect her the more she circumvents our measures.

After fighting for so long to get her off her meds and onto natural remedies, tonight April asked me if we should put her back on the zombie meds, to put her back into a vegetative state so she can’t hurt herself. These are the heartbreaking decisions. All we ever wanted was to get her off the zombie meds so she could have a higher quality of life, and now we’re almost there. But we’re failing at protecting herself and the people that come into contact with her. Earlier this week she punched a girl in the face. In a hotel lobby in January she punched an absolute stranger in the face. We’re going to end up getting sued, or reported for negligence at some point. We’ve talked about putting her in homes, we’ve talked about putting her back under the zombie meds.

What is quality of life?
A girl drooling in front of a TV that just wants to be cuddled vs. a feisty tantruming independent 2 year old with the strength of an adolescent who’s always trying to hurt herself or other people. Which life is of higher quality?

If one person’s quality of life improves at the cost of lowering four other people’s quality of life, is that worth it?

Why do we continue to teach that whom cannot learn? It’s been 9+ years and she still doesn’t understand what we say to her.

Every request is met with no and a tantrum. She’s too heavy to lift now and she’s still not potty trained.

Every one of life’s moments, more difficult than the one before it.

When we say goodbye, whether through death or through Institutionalization, the pain will be the same.

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