Wednesday, August 5, 2015


Live as if you were going to die tomorrow.
Learn as if you were going to live forever.

- Mahatma Ghandi

There is something I never get tired of, and it is to watch my boy sleep. He looks so peaceful, and his body is getting rest. Sometimes Jacob snores, sometimes he gives out these big deep sighs in between his breaths. His room is never completely quiet. You hear the sounds of his oxygen concentrator, bipap machine, and feeding pump. In the summer, we also have the big fan on around the clock.

Tonight, Jacob's dad and sister are coming back. As I wrote in my last post, I felt quite challenged to take care of Jacob around the clock by myself this time. Things got more intense before it got any easier. Tonight, I am hanging on to the rhythm we established during the two weeks. I figured out to do the job of two, and I stole so many kisses from my boy in being around him so much. In the end, this time was a gift.

Jacob's seizures did not let go last week. Instead they got more intense. A pattern very common to Jacob. On Thursday, it was time to take Jacob in. I knew his Phenobarbital level was low, and I knew he needed an IV load of the medication in order to stop the seizures. Due to this new kind of seizures, Jacob had a brain MRI on Friday evening.

On Saturday, Dr. C and Jacob's Mito doctor both came to see Jacob and I. I knew it wasn't good news that they came together. They reviewed Jacob's MRI from today with the last one he had three years ago. I didn't need an MRI to know Jacob's brain had gotten worse, but it makes it pretty black and white to see the two brain images side by side. In addition, Jacob has some abnormal liver test values, which would indicate progression of his disease. His Mito doctor used the words "Jacob is running out of time". Dr. C said if you have problems with your autonomic nervous system you might have 1-2 years to live, not 5-10 years.

I cried for three days. Friday, Saturday, Sunday. My closest friends checked in on me, some several times a day. You know who you all are. Monday, I started to get mad. I started to question what I had heard, and what it truly means to Jacob. I am smart enough to know that these feelings are all part of your grieving process.

But I think what I truly needed to hear was the words from my friend Heather. Heather, who has lost two children to Mitochondrial disease. "Nothing has changed". It's true. We have known for a very long time that Jacob's disease will never get better, it will only get worse. We have never known how long we will have Jacob with us, and I don't know that answer tonight. We have always wanted to give Jacob the best life possible, and that will not change now. If anything, we will try to live life true to Mahatma Ghandi's words even more:

Live as if you were going to die tomorrow.
Learn as if you were going to live forever.

This is taken as I was packing up to take Jacob to the ED on Thursday. Jacob was holding his new friend Jonah,

This is Jacob relaxing in the shade after having been at the pool today.

Time at the pool always puts this boy to sleep....

We have an intense week ahead of us. First thing Monday morning, we are meeting with Jacob's liver specialist to understand more what the liver results mean. Tuesday afternoon, we have a care conference with Jacob's core team of doctors and the PICU to discuss Jacob's care. It's going to be intense discussions and hard decisions.

We're not on an easy road, but we will cherish every good moment with our boy as we always have. Nothing has changed in that regard.

Love, Maria.


  1. My heart goes out to you, Maria. Prayers for Jacob & your family.

  2. Ugh. So hard. My daughter has really been struggling with autonomic issues (dysautonomia, CVS, & autonomic storms) for the last 5yrs. Always present in some form or another. And sleep has always been difficult for her, so when she's able to relax and sleep...there's nothing better! Praying for your boy!