Friday, August 12, 2016


I don't know if you can talk about a honeymoon as part of grief, but we did have a grace period earlier this summer where the deep pain of losing Jacob was smoothed by the beach, riding up steep mountain passes and been swept away by the pulse of the big city. The enormous mountain of grief was divided into smaller manageable chunks by friends never leaving our side, always ready to pick us up wherever we were in the moment. I have a core group of friends checking in on me daily, making sure I can make it through another day, making sure to let me know of the butterfly, rainbow or dragonfly reminding them of our beautiful boy. Messages making me smile and often cry. Friends making sure we find moments of joy, even laughter.

I knew coming back from New York city would be hard. There was no more fun trips waiting for us. It was time to settle at home once again. Our home belonged to Jacob. Every room was adapted for him so he could play right in the middle of his family - both inside and outside. There are reminders of Jacob everywhere in the middle of a very quiet home. I sometimes randomly open a drawer or closet to found another foam pillow, another stack of books or diapers. Sometimes the findings give me a smile, sometimes the findings get a grip of my heart and soul. It's a heart and mind of unpredictability right now.

The endless hours of sorting through Jacob's things have started. I don't wish this on anyone. I just don't. It's exhausting, draining, and so very sad. I keep telling myself Jacob never ever cared about material things. He was happiest surrounded by friends and family. He only asked for two things in his life; a bike and a minion fart blaster. Two things in his ten years long life.

For us, his things have emotional value. They are filled of memories of a past time. Things we cling on to because they keep us close to our boy. I can simply not have his heavy, not so pretty, wheelchair leave its' spot in the kitchen. The chair that took Jacob places, filled with so many good memories. It's parked next to the backyard door, and will probably stay there for a long time until Jacob gives me a sign it can go. The same goes for his hospital bed. It won't leave his room until the right time has come, if ever.

The same thing goes for Miracles for Mito and Children's. It would be easy to walk away from the work when Jacob isn't here any longer, but the cause turned into something so much bigger than our boy over the years. Friendships, passion, and making a difference are still my drivers and inspiration. We always called Children's our second home, and I am just not ready to lose it. I had to drive Sarah down to volunteer last week, and I found myself a comfortable chair up on the second floor overlooking the busy atrium. I could watch the action from a distance, hear the ball machine, and of course a few people still found my little hiding spot. I just felt so very much at home.

There is also a feeling of guilt coming with the new freedom of not having to care for Jacob 24/7. We have a social life again. We can sleep in in the morning, and we can finish dinner whenever we want. Jacob's evening care had to start at 6:30 pm to have a chance to get Jacob in bed in time for his night cocktail of medications. We tailored all parts of our lives for our boy, and we so happily did it. It's hard to beat the purpose of life when you have a child who literally and physically needs you all hours of the day. We knew that his life was dependent on us making it happen. It was sometimes a hard life, but it was also so very gratifying. I would do anything to wake up to that clear vision of life for one more day, to feel in your whole body the simplest but most important lessons of life. To fill that empty hole in my heart craving and longing for our beautiful boy who completed all of our lives.

We are fumbling to find a new normal. We have shitty days, we have "ok" days, and we have glimpses of hope for what the future will hold. We are learning to walk again. We fall, we scratch our hands and knees, we take a few steps forward and a few steps backwards, sometimes we miss the road ahead of us completely, sometimes we're able to even jump or run for a short stretch, and most of all, we love when a friend holds our hand.

The coming weeks will force us to pick up our walk. Sarah is starting high school this week. I worry about her, worrying that something or someone will push her over, hoping that a friend will always be there to pick her up. I know deep inside she's a strong kid, but with a bleeding heart with too large feelings to sometimes put words or sense to. I am going back to work in a week, which will be a good distraction. I like what I do. It will at the same time add stress to my life, and I need to figure out a balance with competing demands which shouldn't be a big issue for a known multi-tasker, but right now it all seems a little overwhelming.

I hope you will come with us on our fumbling walk as we put one foot in front of the other.

Lots of love and gratitude,


  1. This took a lot of courage and love to write. I thank you for the creation of a "safe" place to talk about what those outside of Mito just gloss over. Keep the things you need. Time will decide what has to stay and what is free to help someone else. You have not arrived here by accident, the path may be hard but the joy in giving will carry you in ways we might never have ever known otherwise.

  2. It was great to see you in person today. I wish I had given you a better hug. It was my day to grieve big time, their birthday. Well done today! And I hope to get to visit with you more in the future!

  3. Continued prayers for Peace for your entire family! You are all simply amazing!🙏❤️

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  5. Maria, you probably thought of this already, but I encourage you to let the counselors at Sarah's school know to check-in with her and help with the start of the new school year.