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May 12-18

This Week

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It's been a rollercoaster, friends. I'll keep this one brief because it's so hard for me to focus on typing about how this end of life journey has gone thus far. So, just the facts.

California couldn't happen because after a significant pain crisis with Mattea on Saturday, our team upped current medications and added some new stuff. All in the name of comfort. When I gave the new doses, and meds late Saturday, it put her into a respiratory depression that was taking her from us, right before our eyes. One hour she was her much improved self, pain-wise, and the next hour she was ghost white, flaccid, and breathing about 1x every 10-15 seconds. Her heart rate was all over the place, sometimes bounding and fast, sometimes weak and thready. But she was comfortable, peaceful. Her skin looked like porcelain, and she was in my arms. I just held her, talked to her. Told her everything I wanted her to hear in those moments that everyone believed were our last. We called close family in to say goodbye. After about two hours, she moaned out, opened her eyes, and her blush cheeks returned. She had tone again. It was the single, most incredible thing I've ever witnessed. No surprise that my girl would surprise everyone, even at the end. With that event alone, I knew California was off the table. She told me, so I listened. Heartbreak no less, but her comfort is and always has been at the top. That alone, takes the blow out of the loss of memories I had hoped to make there. Memories for all of us, even if it was a dream all of my own

Sunday was hard. Monday was better. Tuesday was hard. Today was better. She spends a lot of time awake thanks to steroids, but it's a fallacy I am happy for right now. She's awake, her pain is well-controlled, and she's not having any seizures. Under the circumstances, I can't ask for much else. 

No one knows the extent of time this process will take, but we do know just when we think it's over, or nearing...she decides differently. As expected, she will continue to be our guide. 

We love all of you. 
Tara

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