Today started out well enough but this afternoon Miss Courtney really struggled. In the course of an hour she faced an up-hill battle with some seriously strong grand-mal seizures. One moment we were snuggled in for story time and in the next, she is fighting to breathe.
These last two weeks have been fairly peaceful ones for our Courtney. A seizure comes daily and she fights it, sleeps for a bit, wakes up and all is well. Until the next one the next day.
Her weight has remained steady at 72.4 pounds. Not that that is remotely healthy but at least she has maintained it. She is not in pain and for the most part she smiles and is very happy and content. It has been a HUGE blessing and I don’t take one moment of it for granted.
Today was very different. She was fussy this morning and not very smiley at all. She wanted to be held most of the day which is pretty unusual for her. She likes to be moved into different positions. Then the seizures came and all bets were off.
These were hard. She turned purple and began to turn blue before she finally got a small breath. Her body was pulsating and stiff all at once. Her face contorted and when she finally did get her breath she was choking, coughing and spitting up phlegm. It was a very hard 60-90 minutes. At one point Jerry looked at me and no words were needed.
We thought this might be it. It was very intense for both if us, but especially Courtney. How strong my girl is. Her will to remain here is an amazing gift. Truly it is.
As I held her afterwards, I continued to pray to God to take her home and stop her suffering. I know that He will when He chooses but when watching your child gasping for breath and crying out in fear, all you want is for it to stop. You want them to be at peace with no fear or pain.
Another thing I realized tonight was that no matter when or how God choses to bring my girl home to Him, I will never truly be ready to let her go. I keep telling myself I am and then as I come close, I realize that indeed I will never truly be ready to lose my daughter. It’s unnatural and against every mothers instinct to let go easily. I just pray for the grace to survive it all.
About two hours after her seizures, our sweet girl gave us a smile again letting us know she was OK…for now(pictured above). One day at a time my friends. One day at a time.
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