My daughter has epilepsy. Before she was diagnosed doctors believed she suffered from febrile seizures. But as the episodes continued, they ruled that out.
She began anti-seizure meds a month ago. Sunday night she had a prolonged seizure and ended up on a ventilator for the second time in her life.
They administered a cocktail of three drugs via four IO access points which were drilled directly into her bones.
After she was stabilized, the transport team from Children’s got her ready to go to the PICU an hour away.
We got admitted. They were able to remove her vent, but the hardest part was still ahead. As she woke up from powerful mixture of drugs, she became inconsolable. She screamed and thrashed for hours at a time.
Finally, in exhaustion she and I would both collapse.
Twenty-four hours that cycle continued.
My mom said:
- I don’t think anyone else would have the patience.
- No one can settle her like you.
- She just wants her mama.
I knew those things were true. I never questioned whether or not holding my baby as she thrashed in my arms was the right thing to do. I never got angry with her. I never wanted to leave her. I only wanted to end her pain.
I loved her. I suffered with her. I needed to hold her not just for her, but for me. I needed to be there and do what only her mom could do.
Then it came. The kicker. The big AHA! The God speaks moment. He said:
If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts… Mt. 7:11
After 48 hours of non-stop suffering by her side, in my exhaustion, my weariness and my devotion to her, my Father empowered me with a truth that I desperately needed to hear. Everything I was doing for Laylie, he was doing for me, only better.
I have loved you with and everlasting love. Jeremiah 31:3