Tuesday, April 9, 2019

Tuesday, April 9, 2019 -- Mattie died 498 weeks ago today.

Tonight's picture was taken in April of 2005. We were celebrating Mattie's third birthday. He wanted a Blues Clues party, and I planned a fun scavenger hunt for the kids as well as arranged for a university student to come and do a magic show and introduce the kids to his sidekick, Hobbs (the bunny). Mattie had a great time and loved petting and getting to know Hobbs. So happy we snapped this photo before our guests arrived and the party began. 






Quote of the day: There is no greater sorrow than to recall happiness in times of misery. ~ Dante

We are very lucky to have access to this lounge on our hotel floor. It is open for about 12 hours a day and serves breakfast, snacks, and provides coffee, tea, water, and juices. It is a nice way to start a very early morning. As we got up at 5am today, in order to be downstairs by 6:30pm or so to set up for our 20 person focus group meeting. 

These beaded belts are the art work that line our hotel hallway. In fact, when we arrived in our room, there was a post card on the bed introducing us to the Director of Hotel Operations. She provided her email and phone number, to contact her with hotel issues. I literally wrote to her yesterday, and she got back to me this morning and couldn't have been more professional and pleasant. She resolved all my issues. Unlike the nightmare we experienced at our hotel stay in Atlanta. 

This cowgirl pose greets us each day in the elevator. 

My lifetime friend, Karen, told me about the "here comes the sun" lounge in the hotel. She does great research. I passed this spot several times already, but never paid attention to it, until she mentioned it to me. Funny, I need someone from NY to get me to stop and find something right in front of me. But I literally chalk up my distraction and agitation to my recovery. I was dealing with kidney stone pain for so long, it wiped me out. Now, when I don't have that pain, I am struck with a migraine. A migraine I have had for days now. Migraine meds aren't working and I know early morning rising isn't helping how I am feeling. 

Right outside our hotel window is a huge skyscraper. Mattie loved them! The building is huge and looks like a mirror. What I find intriguing is the reflections in the building, almost make the buildings look like cactus. 

I am strangely fascinated by all the unique chandeliers at the hotel. 

Many of the chandeliers are made out of colored glass!

Between sessions today, we ate at the hotel restaurant. Can you see the big wall of windows? Well it isn't a wall, but instead a garage door. They had them open today and fresh air circulated the lobby. Keep in mind it was over 90's outside and humid. 

Tonight, we are going to a restaurant called Quiessence. I read about it in DC before coming here. It is farm to table food, and literally sits on a farm. I am hoping it is a better experience than last night's disaster. We went to Tarbell's last night. It gets rave reviews and is family owned. I thought the food and service were awful. 



It has been a non-stop day today, starting with our focus group. In which Peter and I typed notes while people were talking. It was very mentally challenging, because we had a lot of content to cover in a short period of time. After the focus group, Peter and I worked for about 90 minutes to process these notes, clean them up, and send them out to our research team. Following that, we met with the team about our two hour presentation tomorrow morning. Then after that we went to a session entitled, "I can't go back into that room. Strategies to help multidisciplinary team members with difficult patients and families." This session was an hour and 15 minutes long. The social workers did a good job and provided strategies to really help clinicians work through challenging situations, but remember Peter and I were the only ones in the room who are parents. So we have a different lens then the professionals, because we LIVED this.