Catch Up & Clocks

Oliver has been experiencing what I call neurological storms. Allergy season tends to increase seizure activity and the tree pollen this year is creating havoc. This afternoon was another entry into the chaos of convulsions. Another area of the brain, another type of movement. He has an appointment with a new neurologist at the end of the month, but I made a call to see if we can possibly move it up. I am anxious to get a plan in place.

I remember in Waverly's last year, her seizures increased and we played catch up, never able to overtake the beast that is neurological in form. I fear that we are entering that same phase with Ollie. New medications, doses, titrating up and down.

Oliver is 7 months younger than Wavey when she died. There has been a dark, secret clock keeping time, counting down the days until his twelfth birthday. They are two different souls. Their lives do not follow the same path. However I have been unable to foresee time past 12 years and 3 days. His clock runs to January 2, 2019. I struggle to see beyond.

My hopeful spirit believes in more time. I know I have zero control. I cannot live in fear of a day on a calendar. But I am honest with the way my heart and mind work. Welcome to my world.


I can't even imagine how painful your journey is but it sounds totally reasonable to live by the clock of 1/2/19. I'm praying for your family today.
Crystal Hinman said…
Hope is so tricky for me. Your Disney post has really resonated with me lately. There have been good days where I have kind of forgotten how ill my children really are and then something happens (a hallucination this week) that brings it all back to the front. I know their sick but for a second they just seem like maybe they are going to miraculously beat it. I try to protect myself from hope a little because losing it over and over again is so painful. I still have hopes, just shifted. Thinking of you always

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