We are smack dab in the middle of two very bad days with my girl.
Two nights ago, after laying her down for bed I was taken over completely by an anxiety I hadn't felt before. I know myself pretty well but even I couldn't understand what was prompting me to feel this way. I ended up in bed beside Mabel, holding her, rubbing her and feeling her mouth for breath every couple of minutes. She was sleeping soundly, and breathing steadily. There was nothing any more alarming than usual that was causing me to feel overly anxious, and yet I was.
The next morning she woke up early and seizing. She took some of her bottle, but not like usual and her body was already jerking pretty badly. And then, one large seizure followed by a lot of vomit, more body jerking and eventually screaming that lasted 9 hours of the day with no relief. She wouldn't take another bottle by mouth so I fed her by tube the rest of the day. She was weak, agitated, irritable and exhausted.
The anxiety I was feeling the night before carried over into the day and I ended up crying several times. I can't explain how difficult it is to be doing so well emotionally for such a long time and then to suddenly have a very bad day. It's overtaking and sad beyond words.
I'm trying to wrap my mind around how I will one day NOT be able to hold my baby any more. She will, one day, not be here to physically kiss or smell. There are days when I can say that very flippantly, it's reality after all. But then there are days when my mommy heart almost stops beating at the thought. The only way to explain the racing thoughts accurately is to compare it to not being able to catch air while under water. Holding your breath for so long that you feel as if you may pass out completely. Yesterday, I wanted to. I wanted to not feel any of what I was feeling.
And yet the thoughts continued to come, my heart continued to race and my mind was full of all the awful scenarios that could usher Mabel from earth to Heaven one day. It's devastating, incomprehensible, and so heavy no one should ever have to carry it.
Please pray for Mabel over the next several days:
that the new 'big seizures' would stop.
that she would not vomit any more.
that her body would rest.
And for me:
to be strong enough for her [Nora & Braden].
And for the other children:
that they would feel peace in this home.
We are all we have and we need to be in this together.
All of it, all the time.
Keeping you all close in thoughts and prayer Ramee
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