This morning Daniel had another seizure.

Our “no seizure” run since December 28th is over. We didn’t make it two months.

Not only that, he was awake. This is the first seizure he has had when he has been awake since Christmas day of 2017 – about 14 months.

As we were sitting on the floor in Daniel’s room waiting for the seizure to stop after we had given the rescue meds, David said, “You can’t put our situation in a box. Whenever we think we have things figured out, they change.”

It’s true. David and I went out yesterday afternoon, and friends watched the kids for us. We assured them it was extremely unlikely that Daniel would have a seizure because he hasn’t had one when awake for over a year, and even then it was only one in 28 months! That is now out the window. It is also out the window that we can leave Daniel alone in his room in the morning when he wakes up early or playing in the loft for a little while by himself. We can’t be lazy. Someone will need to be with him all the time.

This morning Daniel is a mess. The postictal phase (the time after a seizure) leaves him floppy, somewhat confused, irritable and generally difficult. So, we will all be home this morning, cuddling on the couch watching a movie, helping Daniel and helping each other.

8 thoughts on “Not In A Box.

  1. My heart goes out to your family and I will always keep you in my thoughts and prayers. We sure miss his little face at Independence. Hugs to all of you.


  2. True. Once you figure it out they somehow know to change the pattern. These kids are smarter than us. Hugs. I know this similar road. It’s not easy but there are better days.


  3. We are so sorry dear friends. My patience is growing thinner and thinner teaching 9th graders. I can’t imagine yours! Therefore we continually ask our grace-filled Father to strengthen you both with all power for all they endurance and patience you need each hour of every day & night, with joy because of your secure place in the Kingdom of the saints in light! We love you all! B&T


  4. Tell Daniel I love him and give him a hug from me 🤗 I am so sorry Ruth this is happening! I am trusting the Lord alongside you all for strength and sustained peace as you all continue to endure and persevere together 🙏🏼❤️💜


  5. My heart is so heavy for your family. I will be praying for God to keep you strong, able to endure and to bring support for when it is needed. Love LT


  6. So hard for you. Thankful the Lord is there with his grace. Can relate to your thinking you have a situation all figured out, and then God surprises you. Happens to me with Doug’s PD.
    Any possibility of a seizure-alert companion dog?
    Praying for you all.
    Barb and Doug


  7. Oh Ruth ….. I am SO sorry. I am glad that we serve a great God who loves you all and has a perfect plan even though the road is rough.


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