Love and Illness: Breaking up is Hard(er) to Do

October 2016

Wow. This is one of those posts that's incredibly difficult to write, necessary to write, and takes my breath away as I try nervously to put what I feel into words.

Many of you, but not all of you, know that Kiernan and I ended our relationship a little over six weeks ago. 

Black Moshannon State Park

Because this blog is read by many, including those who know Kiernan, it's important to me that I do not say anything to hurt him more than he is already hurting. Less than a month after we broke up, Kiernan's dad also died. 

This is enough pain for him to be in at this time.

It's also possible that people I date in the future could see this post, and there seems to be nothing positive in airing what happened between Kiernan and I so publicly.

Yet, I have shared much of Kiernan's and my journey here on my blog. I've shared how we fell in love, how we coped with my illness on a vacation together, how we journeyed through the past two years. So, I think it's important as part of my mission to blog authentically to share that falling out of love happened, too. 

Kiernan and I are just like every other couple out there--facing tough challenges unrelated to illness. The illness simply adds an extra dimension.

While the news of our relationship ending came as a surprise to some, in reality, we gradually unraveled. What unfolded during our more than two years together will stay between myself and Kiernan, a few close friends and my journal. 

In the end, while we loved each other, I felt that we didn't have enough love to stand on to create and sustain a long term, lifelong relationship.

I felt that we didn't have the same vision of a future together.

I felt that we had different ideas of 'time'.

It saddens me tremendously that things did not end amicably. 

I leave my heart open right now, hoping that some day we can be friends who care for one another. 

Goofy Guy

As my initial anger fades, I find myself struggling to reconcile what it means to love someone, but not have the love needed to sustain a relationship.

He's a goofy, smart, funny, kind, gentle man who opened my eyes to so many new things, while journeying with me through my illness.

I miss him. But I also believe that we are not meant to be together.

Kiernan was the first man I dated after 17 years of illness. Previously, my long-term relationship with my on and off boyfriend from high school and college ended shortly after I got sick. Again, he was a good man, but we were not a 'match' and my illness strained us. At 23 and 25 years of age, we weren't able to grapple with the illness and move forward. And I'm okay with that, as he went on to marry, have three children and a successful career.

Part of what Kiernan taught me is that I am capable of having a romantic relationship, chronic illness and all. 

It is possible to be a fully present partner even with the limitations of illness. It just takes some flexibility and help from your partner.

I also learned that what makes or breaks a couple when one of them has a chronic illness just may not be the illness at all. 

For us, it was more about what we wanted when it came to marriage, a child, financial security, and all of the other normal things that couples fight over, break up over, and ultimately can find to be irreconcilable differences.

This was the case for us. Or so I believe from my perspective. Kiernan's may be very different. And sadly, we both left the relationship feeling betrayed and hurt.

But, what broke us in the end was not my illness.

Even so, my illness made it harder for me to leave than it might otherwise have been. 

The loudest voice in my head is: "Who would want to date me with this illness?"

Kiernan saw me, not the illness.

I have to hope that another man will do the same some day.

Kiernan and I dated for over two years, and I do not regret any of it. I have grown so much over these past two years with him. And I continue to grow as I figure out my new path forward.

The past few months have been difficult, as Kiernan and I tried to find our way forward. I know that I gave it 110% of myself and that is the most we can ask of ourselves.

If Kiernan happens to read this post, I hope he sees that I only want the best for him, that I hope he can find his dreams and that I want only for him to be happy.

While I've sorted out whether to stay or leave this relationship, I've had little energy for blogging or keeping in touch. 

Here at the beach, I'm watching the waves crash on the shore and the tide move in and out...crying tears for what might have been, for the future I had hoped for, for the future that is now different, for the relationship that fell apart, for Kiernan's pain over the loss of a parent, for knowing this is the best decision for me, for knowing that doing the 'right thing' is often the hardest, for knowing that I was fortunate enough to know love again. 

Illness or not, breaking up is hard to do. But when we are chronically ill, it's quite a bit harder. 

Thank you to everyone who has lifted me up and continued to lift me up during this difficult time as I find my new path forward.

Blessings,

Emily

Labor Day and Lana

Please click here to view the link in my blog.

Kiernan and I got to take Lana on a big Saturday afternoon outing this weekend. We had a blast! I hope you'll take a minute to watch the YouTube video--to see Miss Lana in action, to see me in my new state of health, and to see and hear Kiernan! :) I just discovered this new function on my camera and now think it is the coolest thing ever!

At the Marsh

The afternoon was filled with laughter, silliness, beautiful weather, nature, play, and quality time just the three of us.

Being able to be with Lana in this new way--engaging fully with her--and growing in my relationship with her fills me with joy.

I love that she is getting to know Kiernan and trust him, too.

Whether or not Kiernan and I have a child of our own, it's so important to me to share the joy of children with him, together. He's so great with kids and they totally love him.

Checking Out the Fishies!

First, we spent some time at one of mine and Kiernan's favorite parks--a marshland--where Lana ran on the boardwalks for a bit.

Rock Climbing

Next, we headed over to another favorite park--which brought back memories of Labor Day Weekend picnics with my high school girls! 

Something I Haven't Done In Decades!

We waded in the stream.

Striking a Pose

And Lana was able to talk Kiernan into going into the water...

Goof balls

A six year old is a much more persuasive than I am!

Zip Line Time!

Lana has not spent a lot of time with Kiernan, but she adores him and seems completely at ease with him. She trusts him, and asks him to play and to help her.

These Two Get Along So Great!

Mr. Kiernan is one silly guy.

His New Campaign Photo

We ALL partook in the fun!

Kiernan needed a few lessons from Lana on how to 'pump' correctly and make sure to swing from front to back and not side to side. :) Haha. Lana got such a kick out of Kiernan pretending he didn't know how to swing.

She was very serious about discovering who could swing higher!

I tried the zip line too...quite unsuccessfully. Not meant to carry my own body weight quite yet!

So. Much. Joy.

Land made Kiernan work pretty hard! :)

Buddies

That Kiernan is a funny one.

We showed her our favorite covered bridge.

I Love My Niece!

Thanks, Lana, for the great afternoon! I think we were ALL equally pooped out.

And it was worth every ounce of energy.

On Sunday evening I got to go out to drinks with Sarah, sit by the fire pits at restaurant, have a my first-ever cosmopolitan and chat for 3 hours! 

(No pic because it was too dark!)

A busy but wonderful Labor Day weekend: One on one time with Kiernan, time with Lana and Kiernan, Lunch with Kiernan and his dad, drinks with Sarah, and a day to NOT labor on Monday. I needed the rest and, while I felt okay doing everything, my ANS threw a fit Sunday evening and didn't let me sleep! Still trying to find that balance between pushing, but not pushing too hard.

Blessings,

Emily

Babies Part III: Sitting in the Emptiness

Current Reading Material

The truth is, life would be so much less complicated if I didn't have the desire to be a mother, especially biologically. Some days I just want to push that ache inside me away. I want to tell it to find another home. Because other than that ache, that painful ache inside me wanting to be a biological mom, I'm happy and life is good. 

I have realized dreams I never imagined possible, particularly falling in love with the man I believe is the love of my life and experiencing the possibility of marriage. Just a few years ago, we never even thought dating was possible.

Beach Day: February 28, 2016

Evelyn asked me to do two things: sit in the wholeness of having a child and sit in the emptiness of not having one. Why this choice of words?

Because when she asked me what life looked like without a child, I said: "Empty." 

I have long equated being a mother with living a meaningful life. Let me clarify that this is not a generalized statement. I have many child-free people in my life living full and meaningful lives. I am speaking only for myself. 

 I'm not entirely sure how I came to this place of believing my way to finding meaning was through motherhood. It's certainly not how I grew up. I grew up surrounded by two PhD parents who modeled career AND family and encouraged me to be anything I wanted to be. Right before I got sick that dream was to be a nurse practitioner.

Interestingly, in college I started out pre-med, but later stepped out of the program because I realized that being a doctor would not be conducive to the life I imagined with a family. Early in my life my career goals were being tweaked to accommodate a family.

When I look back at my time spent with children over the years, that time forms some of my most precious memories.

When my parents were divorcing, I took a little time off from some AP classes and instead used my time to volunteer in the autistic children's class at Easter Seals. This was one of the most gratifying experiences of my life. I still light up talking about those children. 

During college, I looked forward to babysitting on the weekends or to my weekday afternoon babysitting one of my professors' sons. 

I started babysitting at age 12 and loved it. I was able to babysit for a neighbor, who's infant son I watched grow up over the years. From her I learned to change diapers and give bottles and let Will cry himself to sleep. I learned how to care for all of his needs and later for those of his baby brother. I spent a summer babysitting all day during the week. I marveled at the wonders of motherhood and of these small children entrusted in my care.

I babysat numerous other children in the neighborhood.

As a little girl when I was at my own babysitter's house, I tended to the other children, covering them with blankets and 'mothering' them.

In looking back, there was never a time in my life that I didn't envision myself as a mother, and I saw it as a natural and desired path.

I took for granted that I would have the opportunity to be a mother.

During my illness, I began to recognize that being a mother might be impossible, but I was never able to face the grief of letting the dream go completely.

As I live the questions, my questions are:

What does a meaningful life look like without a child?

If I have always felt that being a mother is my 'calling' in life, how do I make peace with not being one?

Will it ever not be painful to look at my friends' children?

How do I reconcile this ache to be a mother with the reality that it may be impossible?

A very big part of me feels that the timing is just not right.

That breaks my heart. 

It makes me angry. 

Why is G-d taking another thing that I want so badly away from me? Why another huge, unbearable grief?

If Kiernan and I were to have a child together, we would need to start trying as soon as possible.

We have a relatively new relationship, and while it is strong, committed, loyal and loving, is it ready for a child AND a chronic illness?

I want to enjoy the time we have together now. I don't want to spend it trying to hurry and rush so that we can try to get pregnant. 

But thinking about taking our time and letting go of trying for a baby is heartbreaking to me.

Some days, I just want to throw caution to the wind and start trying and see what the universe decides for us.

When I sit in the emptiness, I am challenged to ask myself what makes my life meaningful. By saying that my life will be meaningful when I have a child, I minimize the meaning of my life now. I minimize the essence of who I am.

How is my life, and how has it been, meaningful for the past 40 years without a child?

I have found my greatest meaning in my relationships with others. I have found great meaning in creating community with others. This can be in the form of a book group or of a group of high school friends who text and share and keep in touch or planning our 20th high school reunion.

 It's very important to me to be a good daughter. It's important to me to be a good partner to Kiernan. It's important to me to be a good mommy to Tovah Rose and Gershwin.

It's important to me to be a good Auntie Emily.

My friends often say: "I'm so glad you keep in touch with everyone else, because I am so bad about it." Or, "I am so glad you keep track of everyone's birthdays." Or, "you are so good at creating community."

We live in a world in which I feel these precious communities, these precious connections, are often lost to the busy-ness of life in 2016.

I love helping and doing things for others. I love doing my best to be a good friend.

I love my dogs like crazy.

I love writing.

My mom says my passions are so many, it's hard to narrow them down or reign them in.

But even as much as I love creating community, being a mother to my fur kids or writing, none of them make me feel deep meaning in the way I ache for motherhood. 

Right now, when I sit in the emptiness, I feel adrift and lost. 

I feel confused and scared.

I feel sad.

I desperately want a child. I desperately want my own little nuclear family with Kiernan. Us. Our child. Tovah Rose and Gershwin.

At the end of the day, I want this little family. This is what home looks like to me.

As I discuss this topic with Mom, I wonder how I'll find my way past the emptiness and what that new life will look like if Kiernan and I let go of trying to have a child together.

What scares me the most is finding happiness on the other side.

When, in life, the outcome does not match our desires, we are often dissatisfied with our lives, even unhappy. When, instead, our outcomes do match our desires we tend to live more satisfied lives.

When I sit in the emptiness, I recognize the high probability that the outcome might not match my desire. 

Where do I go with this?

 I don't know yet.

That is part of living the questions and sitting in the emptiness.

Blessings,

Emily

Love and Illness: Choose A Partner Who Helps You Rest

During A Visit With Aunt Mari at the End of June

When I crashed last week, Kiernan was right there encouraging me to rest, to take it easy, not to overdo, to do what my body needed. He adjusts and adapts to my needs as the come up. 

For me, having a partner who never sees me as lazy, who can adjust to the fluctuations in how I feel from day to day, who actively encourages me and helps me to rest, and is kind and gentle with me is vital. 

It's so hard for me to put on the brakes when I am feeling better. Kiernan will gently say to me: "Honey, you've been pushing really hard lately. And I understand why. But can you try to put just a little tap on the brakes?" 

Last weekend was one when we both had schedules that would have worked for me to have stayed over for the weekend with him, but even when I am feeling better, this is exhausting. 

I just said: "Honey, I'm sorry, but I just can't stay over this weekend. I need my own bed and my own space at home." So on Friday evening Kiernan came over to have dinner with Mom and me. Afterwards, we snuggled up on the sofa and watched a movie (Gershwin and Tovah joined us, of course) and K stayed the night. 

When we started the movie I said: "Why don't we do this more often?" I think we may need to institute a Friday Night Movie Night that forces us to just RELAX and REST! We both love movies, so it's a perfect evening!

We spent Saturday afternoon together having lunch, going to a photography exhibit, and out for ice cream. 

Then, we put on the brakes.  I rested, blogged and just stayed home for the remainder of the weekend.

Our time together was perfect--we found a way to have a wonderful weekend and still give me the rest I needed.

Blessings,

Emily

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