How I Spent The 18th

Baltimore Inner Harbor

On June 18th, I was at the Inner Harbor in Baltimore, MD with Kiernan!

Baltimore Inner Harbor

I wasn't at home sick in bed, unable to leave the house. I didn't plan a ritual to shed grief. I didn't plant a tree to mark the day. I was out living life!

Baltimore Inner Harbor

Each of the past three years, I've been able to do something progressively more celebratory. Two years ago, it was purchasing new make-up. Last year it was a girls night out for margaritas. 

Baltimore Inner Harbor

This year, Kiernan and I took a trip down to Maryland to visit his best friend, his wife and their kids.

Pure Joy! Tommy in the Fountain.

This trip was kind of a big deal on so many levels.

Cooling off at the Inner Harbor

First of all, it involved travel. Traveling with a chronic illness is hard work. I wish I had taken a photo of all of the crap I need to pack to survive a trip--from medications to food to special pillows to my white noise machine.

Kiernan did all of the driving (although we did take my new car!). I slept almost the entire way there, and on the way home I did a lot of talking. :)

It's about a three hour drive to Tom and Jenny's house, so the trip was quite manageable for us, and it's exciting that such a trip is now doable for a weekend.

Travel also disrupts my routine, which is still quite regimented. It means missing a nap or sleeping in a strange bed or eating on a different schedule or eating different foods and, in general, pushing harder than I might at home.

Kiernan and Jenny

Travel tends to cause me anxiety. This time, I was traveling with Kiernan instead of my mom and I was traveling to see people we had never met. We were staying in their home, all of us sharing one bathroom and Kiernan and I sleeping in a bedroom near the 'busy rooms' of the house. 

Tom and Jenny worried that me staying in their house with the three boys might make me sicker, but after much discussion, Kiernan and I decided that even if I did pay a price after the trip, we wanted to be in the 'thick of the action' with the family. 

I am SO glad that is what we decided to do. We (and especially Kiernan) would have missed too many special moments.

Best Friends for 20 Years: Kiernan and Tom

It's no secret that I'm an anxious person. 

So, the fact that I stayed so calm about traveling to visit Tom and Jenny and share tight quarters felt like a HUGE victory. Remember, I've spent the past 18 years not being able to visit other people, not traveling, having folks visit me, and being able to maintain a lot of privacy in my own home.

Kiernan and I have only traveled together one time so far--to Wellsboro, PA for our 6 month anniversary. 

Still, I knew he could and would take care of me. The longer we are together, the more Kiernan knows what I need and how to take care of me. I love how he gently wakes me up in the morning with a kiss on the forehead, how he makes sure I have my Oral Rehydration Solution ready to go for the day, how he makes sure I get naps, and how he makes sure I have a meal ready to eat.

Billie the Sweetest Pit Bull EVER

Kiernan did ALL of the planning and organizing with Tom and Jenny ahead of time. I didn't have to do anything! He discussed my sleep schedule, my illness, my food restrictions, how I would deal with the noise of the house, etc. 

Tom and Jenny worked very hard to accommodate my needs in addition to the demands of three children under the age of five! I did my best to change my schedule as much as I could for them.

My Crazy Man: Riding Tommy's Scooter and Wearing His Spider-Man Helmet.

I'm used to being the 'planner' and it felt incredible to know that Kiernan could take care of everything I needed. 

The Littlest Guy: J.P.

Being at someone else's house, especially someone I've never met before AND just happens to be the very best friend of the man I love, meant I felt the need to be 'on' all weekend. That was pretty tiring!

Taking a Breather: Jenny, Tommy and Danny

We spent the 18th hanging out at the house for a bit after I got up and ate lunch. The kids and adults napped while I relaxed. Then we headed into the Inner Harbor. 

Usually, I'm in Baltimore to go to Hopkins! Not this time!

The Inner Harbor is absolutely gorgeous, and I hope we'll go back sometime and explore it more. I'd love to go to the aquarium and museums. 

It was pretty hot out and we were out for a while, so we did use the Rolls. We StRolled around, took in the beauty of the harbor, rode the carousel (so fun!), watched the kids play in the water fountain, and then got a short driving tour of Baltimore from Jenny.

Despite the heat and missing my nap, I managed just fine. We had take-out sushi for dinner. We hung out in the front yard talking and playing with the kids. I still went for a short walk.

Danny's Idea of a Smile :)
He Wanted to Wear the Shirt from Kiernan ALL Weekend: "This is What Cool Looks Like." Ha!

Throughout the weekend, I rested a lot and took some time away from everyone Saturday evening after having gone to the harbor and missing a nap. 

Kiernan got a lot of visiting time in with Tom, Jenny and the kids, including a brunch out on Father's Day morning while I slept.

Godfather and Godson

Kiernan is godfather to Tom and Jenny's oldest son, Tommy. 

Tommy

These two adore each other and it's an absolute joy to watch them together.

Love

Tommy was SO excited that Uncle "Ham", his godfather, was visiting.

K and Billie

The trip was a success. A big one.

Kiernan Missed Billie!

It feels like a personal victory for me to begin traveling again after all of these years; to have a partner I can trust to take care of me fully and completely; to overcome my anxieties about sharing closer quarters with others, especially those I don't know; and to manage so well energy-wise for a the weekend.

When I got home I was pooped, but I still went over to Dad's house that evening to celebrate Father's day by watching the NBA Finals together. Warriors lost. :(

I woke up on Monday able to go to my PT session AND puppy class that evening. I didn't really take a day to recuperate or rest at all!

Billie Stole my Heart

It feels like a victory in our relationship to be able to travel together; to be able to negotiate what I need and make it work; and to have a partner who is so accepting of my illness. 

Me and Billie
I SO Wanted to Dognap Her! :) 

I spent my 18th anniversary of getting sick in Baltimore with Kiernan, enjoying the Inner Harbor, meeting Tom, Jenny, Tommy, Danny, J.P. and Billie, eating delicious sushi for dinner and enjoy the gorgeous weather. I slept through the noise of three boys running around the house. I came home tired, but didn't crash out.

I faced my fears surrounding travel, sharing tight quarters, meeting people I don't know, traveling without my mom around, and managed just fine in a house with three active little boys.

Thank you to Tom, Jenny, Billie the Pit Bull and the boys for hosting us. I know it's a lot more work to have me as a guest than a healthy person. I appreciate all of the planning you and Kiernan did to make this visit happen. It's so important to me to be as much a part of Kiernan's life as possible, which includes getting to know those he loves most.

This June 18th was all about LIFE and LOVE. It was a victory.

Blessings, 

Emily