Monday, August 1, 2016


I have been told you need to allow yourself to be happy despite your grief. This past week was good. I had true moments of happiness. It was so good to spend quality time with Sarah. The grief found us, but it didn’t take over our trip. Sarah and I had an afternoon where we had an ugly cry together, but that also felt good, to feel “it” together.

Liberty Island

As I was asked in the fall if I wanted to present in New York City on “patient engagement in patient safety” together with Children’s Chief Medical/Quality Officer, my answer was immediately yes. I love New York, and I also thought it would be the perfect time to introduce Sarah to the Big Apple. We would stay right in the middle of Times Square, and be close to all the action of the city.

When Jacob died, all summer plans were re-evaluated. Would I be ready to present and talk about Jacob publicly five weeks after his passing? How do you know the answer to that question? I didn’t. What I did know is that I didn’t want to disappoint Sarah, and I also wanted to continue working with Children’s. I also saw the presentation as a way to carry on Jacob’s legacy, and the work I have been involved with for so many years. My voice cracked as I had to tell a full room Jacob had passed last month. It was also a weird feeling talking about Jacob in past tense. The presentation went well. My Sarah who is probably my biggest critic said I did "ok". I got many hugs from the audience after the presentation.

Sarah loved the hotel where the conference was hosted as well as the meals included in the conference. She also loved to browse the vendor fair, and pick out some “free stuff”. She even picked out a book written by a PICU nurse she wanted to read. Sarah is a good reader, but she’s just not much into books. For her to find a book she really wanted to read, and for her to get the book signed by the author was a big deal.

When I wasn’t sitting in presentations or presenting, Sarah and I explored the city! We did lots of tourist attractions, since this was Sarah’s first visit to the city. Sarah fell in love with Times Square, the view from Empire State Building, and all little tourist shops. I loved the park High Line. It was a first time visit for me to this park built on old train tracks. It was the perfect getaway in the middle of busy streets. Together we both shared the love of walking through the city, and see where the day would take us. We also got to watch the musical “Wicked”, which we both thought was excellent. We also explored the food of New York. Sarah had everything from pizza, bagels, pretzels, donuts, and street corner hot dogs. She was in heaven.

Enjoying NY pizza.


Relaxing in High Line,

Sarah loving the big donuts at Dough Donuts.

Our last night in Times Square

Brooklyn Bridge

I will miss my travel partner as we get back into our regular routine again. We both could give each other undivided time and attention from the time we woke up until we both hit the pillow at night. We talked, explored, and simply had a really good time together. We both are feeling a little blue after this week, but it’s time to be home again. It feels as if we have been on traveling foot since the end of June. It was also odd for Joakim to be completely alone at home. This has not happened to any of us in ten years’ time. I can only imagine how quiet and lonely our house must have been. Sarah is determined to come back to the city, and we’ll bring Joakim with us next time!

Love, Maria.

P.S. Jacob and I made the August edition of the magazine 5280. I am talking about having a medically fragile child, health care in America, and learning how to speak up. 5280 called me the day after Jacob passed, and wanted to come out and do a photo shoot of both of us for the article. There was no Jacob to take pictures of anymore. It was a very empty feeling. Luckily, they included a picture of us both. Click on the link to read the article. You have to scroll down a bit:

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