Friday, February 11, 2011


Things are good. Things are quiet. We have a routine. We have a social life. We work. We get to have a quiet moment at home at night. We have time for the kids. We start to plan and organize our lives. We are thankful. It is the calmness after the storm.

It is good to reflect on the bad times when you are out of the storm. It always hits me during the calmness, the enormous stress we live under during certain periods of our lives. We ended last year with two long months where I simply would not move my eyes away from Jacob – day or night. My body and mind watched and monitored over our little boy, always looking for the next seizure. Talking to Dr. C. on a daily basis, changing seizure plan numerous times. I have lost count of the endless trips to the ER, but I think I can count to 3 hospitalizations or was it 4? A 911 call was part of the seizure action plan each night, and we knew that phone call was never far away. It was really intense, and the unspoken word if Jacob would make it was hanging in the air. What about if we couldn’t stop the seizures? A question no one wanted to really face.

It is February, one of Jacob’s toughest months during the year, and we’re home. We figured out the amino acids caused Jacob’s increased seizures. They want to see us in the mitochondrial clinic, since they have never heard of something like this happening to a mito kid. Wanting to understand further what happened in Jacob’s body and brain.

It’s February, and we have become comfortable to stay back home with Jacob. We have become ok to leave the house without Jacob to recharge our batteries, and come back to our lovely boy with new energy. We have learned to cherish the warmer days here and there that gives us a break from the Colorado winter, a time we can enjoy all four together. In the toughest of times, you learn what gifts you have, and what obstacles are actually true gifts.

In the calmness after the storm, I have learned to take better care of myself. I do make time for myself to get out of the house, to do things that are good for me. Let it be social, a special project or to raise my heart rate. I love that I have discovered yoga. I have always associated workout with breaking a sweat, but love that it can be so much more. When I am in a balance pose, everything else sort of has to give away for that focus on the moment, on the presence. My mind is clear, and ready to conquer the world. Joakim and I are also finding ways to have more time together, sometimes it is as simple as exercising together in the basement while the kids are sleeping. Very simple, no flashy dates, but still time together.

If there is one thing that is certain, the tough times will come back, things that I probably can’t even imagine today. Sitting on my own couch tonight (not in the hospital chair), I do know that I can rely on my mental strength – let it be in the middle of the storm or the calm after the storm.

To a healthy winter!
Love, Maria.

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