Saturday, August 29, 2015


As Jacob woke up last Friday not looking well, there were so many emotions and feelings going through my mind. I was not ready to go back to Children's after how our last stay went in the PICU. I just wanted Jacob and us all to get a break. Before it was time to take Jacob in to see Dr. E, I decided to climb up Flagstaff on my bike. I was definitely not in the right mood for biking, but sometimes a really steep hill is the best medicine for my mind. You think of everything and nothing when you have to use both your physical and mental strength to climb a couple of the really steep switch backs reaching the top.

And as I was climbing, I got some  clarity. "I needed peace". Ever since I left the PICU with Jacob on August 1st with doctors giving us conflicting opinions about Jacob's health and future, I really needed to put it to rest. I couldn't constantly have it be on my mind. Thinking about who's right, being angry at what was said and how it was said, and doubting my own judgment of Jacob. Second guessing myself as I was caring for Jacob. As my legs were burning from not having climbed for several weeks, I knew I had to put that behind me and find peace in living in the moment with my boy again. Knowing that Joakim and I are the two people who know Jacob the absolute best, and will always have Jacob's best interest in mind.

As I was taking Jacob in to Children's after the bike ride, closing down Special Care Clinic, and Dr. E. making the decision to admit Jacob since she was worried about his pancreas, I was ok. I knew something was wrong with Jacob, and that we needed him to feel better. It turned into a short stay on the floor, since bacteria was found both in Jacob's urine and gut. As the antibiotics kicked in, Jacob started to feel better. Luckily, both colitis and pancreatitis were ruled out in the end.

On Monday when we got home, Jacob didn't just look better, he looked so much better. Jacob's seizure control is back to his baseline. This makes me wonder if Jacob's tummy had given him trouble for a little bit longer than we thought and caused his increased seizure activity over the last couple of weeks. As I was finally slowing down, sitting on our front porch in the dark summer night with a few candles lit, I was at peace. I had found my peace again. I was in tune with our boy, and no matter what happens next, we're in it together - as long as I follow my gut and heart.

Love, Maria.

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