Saturday, August 2, 2014


We went to the beach. We traded Colorado for Florida. We went on vacation both of us with Sarah. We took the big scary step to leave Jacob at home with nurses 24/7 for four whole days. This is a first since Jacob was born. The idea was born during Crossroads, a large volleyball tournament downtown, Sarah participated in. Our friend Luiz came to see Sarah play, and as we were catching up on life, he offered us to use their condo in Vero Beach, Florida any time we would like. That sounded a little too good to not explore if we could make it happen.

When we boarded our plane bright and early on Tuesday morning, I knew this wasn’t a small accomplishment. Our nursing coverage plan fell through a few weeks before we were supposed to leave! Our nursing agency worked hard on finding an alternative solution we felt comfortable with. We knew we could never leave Jacob if we didn’t feel completely safe with each nurse who would take care of Jacob.

The afternoon before we were leaving, Jacob’s secretions got excessive and slightly yellow tinged. Jacob showed signs of getting a respiratory infection. I questioned why I had even started “project vacation”. I saw myself landing in Orlando to simply having to take the first return flight back to a sick Jacob in Denver. I was no fun to be around Monday. I was so nervous to leave Jacob, and I did feel guilty to leave him behind.

Jacob had a good night before we left. He was awake in the early morning hours, and I was able to put him back to sleep right before we rushed out of the house. He looked well, and we were ready to hit the road.

As we were driving to Vero Beach, I got report from nurse Gemma that Jacob was doing perfectly fine! I started to slowly relax and take in every bit of vacation. We lived a block from the beach, so we hit the beach right away. As my bare feet hit the sand and I was rushing into the waves I felt a sense of freedom I haven’t felt in a long time. All built up tension slowly gave away for the sound of the waves and the seagulls.

We settled into vacation mode right away. We slept in. We had long breakfasts out in the sun room overseeing the garden. We spent hours on the beach each day. Sarah turned into a mermaid. She spent hours in the water, catching the waves on her boogie board. When she took little breaks from the ocean, she collected seashells or built sand castles. In the afternoons, the rain came in to cool down the air. Joakim and I went for runs along the beach. As the rain stopped, we went back for more beach time before going out for dinner.

On Thursday, we quickly got out of our comfortable vacation mode. Gemma reported that Jacob had had a rough night, and he showed signs of fighting a respiratory infection. She was taking him to Children’s. She thought he might be admitted. That is something that would kill the best vacation. Jacob needs us more than anything when he is sick, especially being in the hospital. We checked in to changing our flights and started packing our bags. Gemma didn’t want us to rebook any flights until we knew if Jacob would be admitted or not. As she was taking Jacob to x-ray and getting labs, I was on pins and needles. I was not on vacation. After talking to the doctor and Gemma, we found out Jacob’s chest x-ray and labs were normal and he would go home! Gemma urged us to stay as planned. Jacob’s nursing team would be able to keep him comfortable at home. It was not an easy decision to stay. Jacob was still sick at home, but we knew we would be home in less than a day. We were so close to completing our time away together.

Sarah came up with the perfect plan to get me back into vacation mode after the decision was made to stay. She got us back on the beach collecting sand and seashells for Jacob, something we had talked about all week. We had admired the different seashells all week, but after this little scare with Jacob, the seashells took on a new meaning, a new clarity. Each seashell is shaped differently by the waves. Each seashell has its’ own story and beauty. We all collected a specific seashell for Jacob to bring back to him.

From Sarah:

From Joakim:

From me:

And as we were collecting seashells, talking about our dear boy, I was wondering why I had had this urge to come to the beach. Why didn’t I just settle on the fact that a family vacation is close to impossible with Jacob being so fragile? Why do I never want to turn down an opportunity? Why do I want to live my life to its’ fullest rather than maybe realizing it isn’t always possible to do it all? And in the middle of thousands of seashells I saw the answer bright and clearly. It is our boy who is my driver. He gives his life 110% every day. It would be so easy for him to give up, but he doesn't. If he takes his life with stride every day, don’t we owe it to him and life itself to do the same? The answer is in the seashells.

Love, Maria.


  1. Beautifully stated, beautiful photos and beautiful family!! Enjoy the rest of the summer! Love, Linda

  2. The same to you, Linda! Have a good rest of the summer! Love to you, Maria.