Tuesday, July 5, 2016


After an intense week at home preparing for Jacob's memorial service, we decided to leave town. We're on our second week in Vero Beach, Florida. Dear friends of ours gave us the gift of letting us stay in their beach house. We're five minutes from the beach. It's always a slight breeze around the house due to the closeness of the ocean. The sky is blue, and the air is warm and humid.

I'm hoping it was the right decision to leave. I feel as if we're sheltered from the enormous grief of loosing Jacob by the beauty of this place. The waves, the sand, the shells have taken us under their wings, and soften life just a little. Our beach life has also simplified our lives a lot. We eat, sleep, and relax. That's basically the three things happening each day. I sleep a lot. I have not slept well in ten years. The first week after Jacob passed, I couldn't sleep at all. I felt as if I was running around jet-lagged, and I desperately needed a nap in the afternoon to make it to bed time. Now I crave my sleep.

Joakim and I read a lot. I have started reading my own blog from the beginning. The printed copy is well over 1,000 pages. I'm on year three of Jacob's life, one of Jacob's toughest years of his life. We swim in the ocean and jump in the waves. We all take walks in the evening. We watch TV with Sarah and play Dominoes. We talk about all day things, and we talk about the past and the future. We spend a lot of time together, but also make room for each of us to have some space.

We're protected by the fact that no one knows us here. I don't need to have a conversation about Jacob passing as I am in the grocery store (and if you do meet me at the store, do know I love to talk about Jacob) or at the gym. On the outside, I am just another mom getting groceries for dinner. There are also few reminders of Jacob in Vero Beach. The first time I saw the gift shop where I bought him a t-shirt last time, it punched me deep in my chest. When I saw a boy wearing the same swim shirt Jacob got for his 10th birthday, I was taken back by the waves. A Minion pen case at Target reminded me that there will be no school supply shopping for Jacob this year. That got me so incredibly sad out of nowhere.

4th of July was harder than I thought it would be. I felt low the whole day, remembering all 4th of July holidays with our boy in it. I was happy we were on vacation, so I didn't have to be reminded of our neighborhood bike parade, swimming in our pool, and BBQs on our deck. I also surprised myself by realizing I haven't watched 4th of July fireworks in years. After BBQ with friends at our house, I always stayed back with Jacob. I typically sneaked out after he fell asleep with his monitor to hear the fireworks from our front patio. It was a good place to end the day after a good evening with friends and knowing our boy was sleeping. It was bittersweet to actually get to watch fireworks with Joakim and Sarah for the first time in a very long time.

I see signs of Jacob everywhere. I see him in the clouds, I see him in a beautiful flower, and I see him at sunset. The idea that Jacob won't communicate with me any longer is unbearable. I need his signs to move forward.

There is also this feeling of guilt. That we are now on this beautiful beach, something we just couldn't do with Jacob. I know it doesn't make sense, but it comes over me. I would of course trade it any minute for another day with Jacob, but I also think somewhere he knows we need this escape right now. It's a place of healing.

It's a time for Joakim, Sarah and I to figure out how to be a family again. We always joked about Jacob being the boss of our family. The flow of our days and our lives definitely circled a lot around Jacob's care and health. I changed my job to be able to care for Jacob, Joakim and I always tag teamed since one always had to stay home with Jacob. Our alarm clock was set based on Jacob's care, our dinner time was set so we had time to get Jacob ready for bed. Our weekend rhythm was determined on when Jacob needed to be home for naps or vest treatments. If we were home or at Children's all depended on how Jacob was doing. It was our normal, our family, and we got really good at having a great life together.

A few times, I did let my mind wander to life without Jacob when he was still with us. I always thought I would be completely paralyzed, and to simply get out of bed would be a huge struggle. This stage of grief is nothing what I would have expected it to be. I found this quote and thought it describes pretty well where we are right now:

"Grief is like waves washing in from the ocean. Sometimes they are small and tolerable, yet sometimes when you least expect it a big wave pull your feet right out from under you."

Tomorrow, we are leaving early for Orlando. We're taking our girl to Disney World. She's so excited, and I hope we will allow ourselves to make that a good day for all of us, simply be in the moment, and find a moment of happiness.

Sincere thanks to everyone reaching out to us. We cherish every message and love from each one of you.

Much love, Maria.


  1. It's ok to escape. I know. We did after Grant died. Hugs my friend.

    1. Deana, thank you so much! This is definitely a bit of an escape! Much love, Maria.

  2. Such heartfelt and completely understandable struggles. Know that you are in all our hearts and prayers as your sweet family adjusts to this new normal.

  3. I came upon your blog and I also have a child with Mito. We live in.... Vero Beach! How cosmic that I came upon this post. Sending you love from CJ's mom.