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

Visiting: Diane and Michael

 Road Trip!

We (and I do mean WE) took a little trip before Memorial Day Weekend to see our wonderful family, Diane and Michael.

47 Years As Lovebirds

The last time we saw these two lovebirds was last summer when they came to visit us.

Azaleas In Their Backyard

The previous summer we travelled to celebrate their 45th wedding anniversary.

Cozy Living Room

Because I can now climb stairs (!!!! I've been practicing for over a year and can now do more than one flight a day !!!!) we were able to stay with Michael and Diane in their beautiful, warm, cozy, peaceful home. 

A Happy Tovah Rose

Gershwin Found A Friend In Diane! 

Even both of the puppies settled right in!

Michael even bought toys for the puppies, which they rudely ignored, but have decided to enjoy now that we are home.

We headed out of town on Wednesday around lunch time, had some time to catch up with Diane and Michael and get settled in before my nap, and then we had a wonderful meal together.

I loved this wine!

Dinner is Served

Salad, zucchini and salmon on the grill (a la Michael), quinoa dish and homemade thousand island dressing = YUM! 

Diane makes sure all of the food meets our dietary restrictions. She's a true hostess.

Death By Chocolate, Butter Pecan, Rainbow Sprinkle's, Hot Fudge!

We topped off dinner with a dessert of ice cream we had brought from a place Diane and Michael love, hot fudge made from Diane's mother's recipe (AMAZING!), and rainbow sprinkles (Michael is a man after my own heart). 

I was so excited about ice cream, hot fudge and sprinkles I took a photo. Ha! 

After 17 years of no ice cream, I'm now able to enjoy it in small amounts.

More Azaleas In Their Beautiful Yard

After a three hour dinner sitting up at the table (!!!) we chatted late into the night. 

The following day, we went out for lunch at an amazing Thai restaurant, took a drive through the beautiful countryside around Stroudsburg, stopped back at the house for some more ice cream, and then hit the road to head home.

I am so grateful we were able to make the trip to see Diane and Michael this year, to continue to grow closer to them, to share our journeys, and to have now been able to see them THREE years in a row! 

So many years have passed without seeing those I love that I just want to pack it all in. Somehow, I have to pace myself.

It's easy to look back over the past three years of visiting with Diane and Michael and see the dramatic changes that have occurred for me in that time period. At their anniversary party, I struggled with symptoms constantly, took a tremendous amount of medications to get through the event and visiting, and crashed big time afterwards. 

Last year, I crashed afterwards but still enjoyed the visit very much. Still, Diane and Michael came to our home to visit.

This year, I made the trip with relative ease. We traveled and visited (enjoying that long dinner) all on the same day. Yes, I slept in the car. Yes, I napped when we got there. We went out to lunch the following day and made the trip home. Again, yes, I slept in the car.

If I may say so myself, it's a big hairy deal. And I'm so happy about it.

Thank you so very much for your gracious hosting of all FOUR of us, Diane and Michael. We love and adore you so much and cherish our time with you. You're the kindest, smartest, funniest kind of people--the very best kind. :)

Blessings,

Emily

Dinner on the Inner Harbor with Jess and Mom!

Jess and Me

While we were in Baltimore, we went OUT to dinner on the Inner Harbor with my friend Jessica, who lives in Baltimore. Jess and I have been friends since 4th grade and I wanted to see her one more time before she moves to Denver. I know she'll be back for visits to PA, but I wasn't going to miss an opportunity to see her before she moved.

Our friend Kate, who became part of our infamous group of 8 that journeyed through junior high and middle school together, was supposed to join us but got stuck in the same traffic we did on our way into Baltimore. We missed her!

In recent years, we've been reconnecting with each other more and more after not being in touch as much during college and the few years after that. It's really been wonderful to reconnect with these childhood friends. For Mom, she gets to see the 'little girls' that grew up running around our house, eating snacks here, doing school projects together, and celebrating birthdays together all grown up into women with their own families and children. 

Jessica's Restaurant Pick: It Was Great!

When we are in Baltimore for a Hopkins appointment, I always think it's such a shame that I don't feel well enough to enjoy the Inner Harbor at all since our hotel is right nearby!

This time, even though it took us FIVE hours instead of three to get to Baltimore, I was determined to go out to dinner with Jess.

Enjoying Our Night Out!

Jess picked McCormick and Schmick's. The food, service, atmosphere and view of the harbor were wonderful.

After our wonderful seafood dinners, we all found room for some creme brûlée for dessert! 

Mom and I haven't had a fancy meal like that in a million years! Divine!

I hope that as I start to feel better we'll be able to make our trips to Hopkins about more than just a doctor's appointment. On the bucket list? The aquarium! And the Lebanese Taverna. :) Dr. ANS recommends the Charleston for a really fancy schmancy high-end meal.

I love having things on my bucket list that I really think I'll be able to do in the not-to-distant future!

It was awesome to be out on the Inner Harbor and see Jess. Thanks so much for coming into the city for dinner, Jess. We LOVED seeing you and wish you all the best on your new life in Denver.

Blessings,

Emily

Our Jewish Family: A 45th Anniversary and Family Reunion

Happy 45th Anniversary Diane and Michael!

One of our absolute top memories of 2013 will be traveling to Stroudsburg, PA for the 45th anniversary party of Diane and Michael, where we were able to be together with the entire Jewish side of the family.

Wedding Photo

A little introduction: My Uncle Stan married my Aunt Vicki, who sadly passed away too early. She has a sister, Diane. Diane, Michael and their children feel like family to us. There are so few of us on the Jewish side of the family, that we have extended the definition of 'family' just a little bit to include them. 

The View

We traveled on a Friday and returned on a Monday afternoon at the end of June.

Our Residence for the Weekend

We stayed in a little cottage on the grounds where the big party was held.

The Grounds

Over the years, we have seen Diane and Michael a few times when they have generously come to visit us. Other than the small number of times I have seen Diane and Michael, Stan and a couple of other members of the family, I have either only seen some people once or twice in the past 15 years or not at all.

The Whole Crew!

Seeing everyone and being together in a big family environment is something that filled my heart with such joy.

Dinner Crew: Dan, Marilyn, Stan, Sandie, Michael, Diane, Beth, Stephen and Mom

We spent every meal gathered at Diane's house, where she had prepared insane amounts of food (what else is a Jewish mother to do? :)). 

Cousin Stephen says I am 'too sweet', so to get this picture I told everyone to 'shut up and stop talking'! It worked!

A Game of Hats: Diane and Maddie

Despite all of the other family Diane had to take care of, she still found time to worry about whether there was food I could eat, to make sure the venue for the party was handicapped accessible and to ask if I'd like to bring a reclining chair to the reception if I didn't feel I could sit up the whole time. 

Diane and Me

What a gift to have someone go to so much extra effort to make sure that I felt included.

Diane, Mom and Me.

I made myself right at home on the comfy furniture.

Me and Mom

Somehow I managed to attend dinner Friday evening after a nap Friday afternoon, lunch and dinner on Saturday, the party on Sunday afternoon, dinner on Sunday evening, and lunch Monday afternoon before we left to come home.

 Most everyone else was at Diane and Michael's house all or most of the days, but we had to leave so that I could rest. A lot. It took a lot of extra meds and a lot of help from my mom to get through the weekend, but it was 100% worth it. 

A Toast From Uncle!

I hope you'll join me as I share more about the weekend and introduce you to my family.

Sister and Brother

Mom and her brother got to see each other for the second time this year. 

Uncle and Me

I love being "Beautiful Niece" and was excited to feel so much better on this trip than I did when we traveled to Chicago for Uncle's 80th birthday party.

Having too much Fun

I hope I enjoy life when I am 80 as much as he does :) And did Sandie either dodge all of these photos, or did I leave her out? :(

Beth and Stephen

In addition to seeing Stan and Sandie again this year, we saw my cousin Stephen and his wife, Beth, with whom I've become fast friends. 

Daughter and Father

We all had so much more time to talk compared to the very, very brief time we were together for Stan's 80th party.

Cousin Dana

After this last visit, I think Dana and I can now say we've seen each other four times in the past 15 years?

Aawwww...

This wonderful loving couple have been through so much together, and continue to share such a deep love and affection for one another. We can all only hope to be so fortunate in love.

At the Sunday Party

Diane and Michael have three children: Karen and Jonathan (twins) and Daniel, as well as four grandchildren (all girls! :))

Karen and Maddie

I have not seen Daniel, Karen or Jonathan since I was 13 years old and attended Karen and Jonathan's B'nai Mitzvah. Other than being in touch with Karen via FB, I haven't been in touch with any of them, met their spouses or their children!

How amazing to reconnect as adults and meet the whole crew!

Spin Me Again, Daddy!

During lunch on Saturday, I got to catch up with Karen, and meet her husband Loren, and daughter, Maddie. 

Loren and Maddie

Me, Maddie and George. 

Maddie wasn't into having too many people hold her, so I was pretty excited that she gave me a few minutes of her time. :)

Stella, Jonathan, Camellia and Jenny

I didn't get to see Jonathan, his wife Jenny, and their daughters Stella and Camellia as much as I would have liked (I think me and the girls were on opposite nap schedules!), but goodness did I ever enjoy meeting them all. 

Listening to the Mushy Speech: Stella, Jenny, Jonathan and Camellia

Buddies: Me and Camellia. 

Camellia and I had lots of fun together at the Sunday afternoon party. All those speeches were a little long for her. :)

Daniel, Stan, Stephen and Cristina

Daniel (far left) is married to Cristina (far right).

Gabrielle and her Buddy

They have a daughter, Gabrielle, who had a friend tagging along with her for the trip. 

Gabrielle, her friend and Cristina

Marilyn, Diane and Mom

We were also joined by Diane's cousin, Marilyn, and her husband, Dan.

Party!

The anniversary party took place in a beautiful setting, with wonderful food, good company and lots of toasts from family. 

The Head Table

Time to Recline

I took Diane up on her offer to recline after the meal, and settled in for the toasts and slideshow. 

Michael and Diane Share Their Love Story

Michael's speech had us all in tears.

Jonathan and Karen

And the kids roasted...

Gabrielle Assists Karen in Roasting Michael and Diane

and toasted…their parents.

Dancing

After Diane and Michael shared the first dance...

Gabrielle and Stella Burn Up the Dance Floor

The granddaughters kept us all entertained with their first-class moves.

Beth and Stephen

We were able to sit at a table of just the family: Stan, Sandie, Stephen, Beth, Dana, Marilyn, Dan, Mom and me. Diane, Michael and their immediate family sat at the head table.

Daniel, Stan, Stephen and Cristina

Look at those stylish men! 

Me and Mom

Mom and I will forever hold the memories of this weekend in our hearts and hope that we will not go this many years again without seeing this wonderful family of ours, who traveled from Texas, California, Georgia and Illinois to be with Diane and Michael on their 45th anniversary.

Diane and Me

We are so thankful to Diane for welcoming us into the arms of the family as if we were blood relatives, and for her constant concern and consideration for our needs.

Diane and Me

Diane knows what a Herculean effort it took for me to get through the whole weekend, be at all of the meals and push through. She made me feel that I could be myself, and not worry about embarrassing anyone while I reclined at the party. 

I'm not sure I would have been brave enough to go on this big trip and visit without knowing that everyone knew what to expect when they saw me and knowing that it was okay. 

Wedding Photo Signed by all of the Guests this Summer

We wish Diane and Michael many more years of love and companionship. May you remember to do what you have done for the past 45 years: never go to bed mad at each other.

Blessings,

Emily

Note: Thanks to Marilyn and Dana for some of the extra photos!