Living in the Limbo

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A Very ‘Emma’ Thanksgiving

Prior to my family arriving for Thanksgiving, I had not only spent time prepping the whole house, but I had made a 20-page guidebook, multiple forms of paperwork for the actual cooking itself, pages of recommended restaurants to eat at that I knew my family would like (and that way they wouldn’t have to spend all day trying to find a place) etc.

 

I was so proud of my prep, and it took me a week to complete everything. I will include some of the paperwork I made below. Of course, as with any event, some hiccups came up, but I was able to get around them in the moment and the whole week went beautifully.

 

November 19th my brother had arrived in the evening, and I was so excited to see him. It was his first time being in Boston proper, and he had never seen my apartment before. Plus, the last time I saw him was a year ago.

 

The following day I had taken my brother to the grocery store, and he had mentioned he had no idea so much walking was involved in the city!! I told him that whatever we buy, we have to carry back home, and he had gotten tired by the time we made it back. I felt proud to have him see what a day in the life looked like (minus going to the grocery store) and how much was involved in it.

 

Later in the day I took him on another walk, and we looked inside a couple shops to take a break from how cold and windy it was outside. During our outing my brother lent me his arm on our way back home since I was having a vertigo attack and unable to keep upright. It was such a nice moment and example of how our family life has changed amongst my symptoms coming up; we adjust smoothly instead of making it a big deal.

 

That evening I had also made the decision to stop eating for the week since I had been having so much trouble with the cream of rice making me sick lately (as of the past month) and I was then starting to react to the Smarties as well.

 

The new TPN formula was working better though, because even after a full day of walking, I didn’t have any stomach grumbling!

 

On November 21st, I had 3 classes that day, so I wasn’t able to be home when my parents arrived at my apartment.

 

I couldn’t wait for my classes to be over so I could go home and see them all there. I hadn’t seen my mom since last March, and my dad since May. This was the first time our family had been all together again since last year’s Thanksgiving!

 

It was great catching up in the evening and watching “Dancing with the Stars” on TV together. We had so many laughs into the evening, and everyone was looking forward to the rest of the trip.

 

On November 22nd I went with my dad to the hospital for my second iron infusion (since I was told before I left my previous iron infusion, that I needed to schedule a second one at the front desk). When we went to the hospital, we had waited for 30 minutes to then be told I didn’t need a second iron infusion. My dad and I didn’t mind though because we had spent the 30 minutes talking about fashion.

 

That evening I had scheduled for the family to go to the Seaport Snowport Market which I had a feeling they’d love the winter ambience and food trucks with tons of snacks from crepes to hot chocolate. There were so many unique shops to look at and I was excited to have them see it for the first time. They absolutely loved it and loved the food which just made my heart so full.

 

Everyone was saying they were loving the trip and the events I had planned which made all the pre-planning time I spent worth it!

 

We then made it tradition that every evening, everyone would move their inflatable beds to be able to see the TV in the living room, and we’d watch “The Great British Baking Show” all together.

 

On November 23rd I had an appointment at 8 a.m. with my autonomic neurologist and was generally feeling very sick that day.

 

In the appointment we rediscussed what we had at the other appointment previously, which was to continue proceeding with trying to get IVIg approved. I was also given a paper referral for my geneticist since the doctor said they were unable to get ahold of them. I had also been given a referral to cardiology for my inflammation and chest pain to make sure it’s breathing related and not heart related.

 

Later that day I took my family on a walk around Beacon Hill to see all the lit-up shop windows for the holidays.

 

Thanksgiving morning, we were up early to watch the Macy’s Thanksgiving Day parade on TV. Afterwards we put on the world cup and had a lot of laughs as everyone was yelling at the referee on the TV.

 

My dad was my sous chef (to make sure I wasn’t overdoing it) and we began cooking at around 11:30 a.m. My brother was my taste tester since my dad and I both couldn’t eat the food we were cooking.

 

Everything was smelling amazing in the house, and I was so proud that I was able to cook something again.

 

I had in the schedule that my mom and brother would have to leave the apartment close to the end of the cooking so I could set up the table and make everything look nice.

 

After everything was set-up, my dad and I invited everyone inside and my friend had also just arrived on time to join us on their day off from work.

 

My family was SHOCKED at how beautiful everything looked and they were amazed at how great the food tasted!!

 

-      Heck, even I figured it wouldn’t be that great ;-)

 

Everyone kept saying they were surprised the food came out so good and the chicken (we got a chicken instead of a turkey) came out perfect.

 

We all enjoyed our time together at the table and had lots of laughs!

 

After the meal, my family did the dishes for me (YAY), and I laid on the couch since I accidentally spent too much energy cooking (eh- it was worth it). They then began setting up all my Christmas decorations in my house.

 

We took some photos and watched more of the baking show that evening.

 

The following morning, we had planned in advance to do a “mini-Christmas” and exchange a gift for each other since we knew we wouldn’t be spending Christmas together again this year.

 

That morning my dad had woken up with a runny nose, so out of precaution, he wore a mask in the house all day.

 

We unwrapped our gifts and spent the day in watching more soccer matches. That evening my parents flew back to Texas and my brother left the following morning.

 

Everyone said it was a Thanksgiving for the books and we’d like to make it a new yearly tradition to have me host Thanksgiving for everyone.

 

I was so pleased with how everything turned out and that everyone had such a wonderful time.

 See how Emma’s entrance into December goes in, “Entering the Holidays with A Splash!”