Babies Part III: Sitting in the Emptiness

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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

Happy Birthday Dad (and Congrats!)!

Dad With His Biggest Supporters

As the longest serving professor in his department, my dad has won many awards for his research and teaching over the years. I still remember attending a fancy ceremony at the house of the university president when I was a very young girl. But after that, I missed out on my dad's other big awards because I was too sick to go. I missed the biggest of his awards several years ago, and it broke my heart.

Last year, Dad won a big award for his research--Distinguished Research Professor--and I finally got to go to the reception and ceremony to support him. It made my heart so happy to feel well enough to be there to support him and the incredible ways he has contributed to his field. 

My Favorite Professor

We all had a good laugh when the dean made sure to mention that no other professor in the college had served as many years as my dad has--he is now in his 41st year and still going strong!

It's incredible to watch Dad wake up every single day still loving his chosen field of study. It leaves me in awe. To discover your passion and remain so engaged year after year? Wow! 

Classes started this week, and Dad is back at it teaching two seminars.

At the Award Reception

In addition, Dad celebrated the big 74 this week. 

Dad says he can't believe he's 74. He says he feels just as peppy as ever. And just as immature. :)

It's a formula that seems to be working for him.

Who Needs An Olympic Medal?

For both Father's Day and his birthday we got to go out to dinner together, which is so special, because those are the kinds of things we were never able to do together. It's great father-daughter bonding time. 

Chatting It Up With Colleagues

In addition to being the family scholar, Dad is also, well, my dad. He loves me more than anything in the world. 

Because of Dad's generosity and hard work, I have been able to receive all of the medical care that I need and want. Without his help, I would never be on the path to healing. I don't talk a lot about how we pay for all of my needs on my blog, but without my dad and his caring heart, I would not be where I am today. Every day my needs are met because of my parents. This is a gift of monumental proportions. One for which I do not know how to ever, ever, ever thank my parents enough. 

Their willingness to sacrifice for me in the ways they do is humbling.

Happy Birthday Dad!

Dad's biggest gift to me, though, is not only the love he shows me through his support of my medical needs, but through his constant belief in me. Dad always believed that I would get better. He never gave up. He just kept believing it. He loved me through it all. We as a family have been through so much, and I am so blessed to have my Dad on my side through it all. He's steadfast and loyal. He's smart and philosophical. He's funny and goofy. He works hard at being a good dad.

Thank you for all that you do for your daughter. 

I love you, Dad and I wish you a healthy and happy year! 

Happy Birthday!

Love,

Champ

Monday Dog Blog: Everything Is Better With A Little Help

Mom helped me to hang a montage of artwork over the weekend. We painted my study in 2009, and I'm finally getting the artwork up that I want in there! 

Let's just say that we had a little help with the process. Gershwin wouldn't leave my side.

I had to wipe off the glass on all of the picture frames again because both Gershwin and Tovah Rose found them so interesting that they walked all over them and slobbered too!

Life is so much better with these little 'helpers'.

Happy Monday!

Blessings,

Emily

Babies Part II: The 'Green Light' to Have a Baby

Now that my health is improving and I am in a committed relationship, I have begun to wonder if being a mother is actually a possibility. Is the door open now? 

The answer is yes, in theory. Hypothetically. The door is open.

But it's open with a lot of limitations.

And it's closing very, very quickly because I'm 40.

Remember those doors I was talking about that are opening and closing so quickly?

First let me begin with the 'green light' to actually have a baby.

In December of last year, I saw Dr. Rowe for a follow-up appointment, during which we spent about an hour discussing the issue of having children. I was so nervous about addressing this topic that I had emailed him ahead of time to ask if he would be willing to give me a two hour time slot so that we could discuss what was weighing so heavily on my mind and heart. Yes, you read that correctly--TWO hours.

It turns out this is a topic that he has discussed many times over the years with his patients. He has watched many young girls grow into adulthood and become mothers. 

I kept preparing myself for the appointment by telling myself he was going to give me the red light when it came to having children. I prepared myself for an absolute "No way should you, can you, could you, would you...consider becoming a mother in any way."

This was my way of protecting my heart.

Dr. Rowe said: "What do you think I am going to tell you about motherhood?" 

I said: "I think you are going to tell me that I am too sick to be a mom." 

He said: "That is absolutely not what I am going to say." 

We discussed the issues surrounding having child--either biologically or through adoption. 

Dr. Rowe gave me the green light to have a child. Biologically. 

Many women with Dysautonomia do well with pregnancy and even after the birth of the child for reasons we don't completely understand. Part of it may be due to the increased blood volume during pregnancy. He was currently working with a patient who was symptom-free throughout her pregnancy and the nine months she had been breast-feeding. 

Because so many women actually do well with pregnancy Dr. Rowe was, in some ways, more in favor of having a child biologically than going through adoption. 

He said that, yes, it is very hard to go through a pregnancy, but that patients like myself who desperately want to be mothers will put themselves through just about anything to be a mother. 

What moved me so deeply was his understanding of how strongly the desire is for some women to be mothers. He understands that some of us see it as part of our lives ever since we are small children.

Dr. Rowe said that what children need is love. He told me that I have everything it takes to be a wonderful mother. He assured me that children adapt well to parents who have limitations. He said I can give a child what he/she needs most--love and stability.

Children of parents with illnesses like mine learn to adapt to a mom who needs to rest or lie down on the sofa. He assured me that kids don't need a mom who can throw a ball with them in the backyard. 

Dr. Rowe later wrote: "As you know, the quality of th emotional bond each child feels far outweighs whether a parent has restricted energy." 

He also wrote: "If you are concerned about variability in your own energy level in the future, I have certainly seen patients over the last 20 years who have been able to go through pregnancies and raise children even with a fair burden of CFS symptoms. They occasionally needed some help when the children got a bit older, but in the instances where the mother was pretty symptomatic, the children got used to the mother's activity level, and regarded that as normal, adjusting very nicely."

Also, it's important to note that there is no evidence that CFS plays any role in changing the outcome of pregnancies OR that it can be passed on to children. Some children do end up with joint hyper mobility, which is genetic, but that is not one of my major issues.

A green light. To have a baby.

I have spoken to my gynecologist about the possibility of pregnancy. Now that he has the clear from Dr. Rowe, he is willing to do anything he can to help me get pregnant. He recommends that I don't 'tarry', since chromosomal abnormalities increase with each year. But he is 100% on board with pregnancy later in life, even after 40. 

Choice. 

A choice I never thought I would have.

Where do I go with this choice?

At first I was just so excited that I got the green light to have a baby. 

I was fairly certain that what I thought I wanted was the opportunity to have a child. The opportunity to try to get pregnant. 

Now, I'm struggling with the truth that I desperately want to be a mom, but I need to weigh how this will affect my health and if it is something we can all manage as a family and Kiernan and I can manage as a couple. I also don't want to burden my mom, Dad and Abbie anymore than they have already been burdened by my illness. I'm also wondering if, even though I want to be a mom, is it truly the best thing for my/our lives?

A door has been opened. A green light has been given. But how long, given my age, is this door really open? How long before the light turns orange? And then red?

I have a choice.

It is a choice with a lot of limitations and challenges. It is a choice that comes when maybe the timing isn't quite right. Is this one of those almost, but not quite touchable, dreams?

Live the questions.

Blessings,

Emily

Babies Part I: Am I Still Waiting for Daisy?

“I beg you, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”

― Rainer Maria Rilke, Letters to a Young Poet

Shell on the Beach

Until now, I have not been ready to write about what has transpired in terms of the possibility (or not) of becoming a mother.

This will be the beginning of a series of posts that attempt to 'live the questions' that have been part of my life for many many years, but that have changed in nature recently.

Beach Day, February 20th, 2016

Over the years, I have written extensively about my aching desire to be a mother and the loss of this dream.

In 2008, I wrote the post Waiting for Daisy.

In it, I wrote:

Waiting for Daisy is a book written by a woman who endured six years of fertility treatments before becoming pregnant. Later, she wished that she had been able to enjoy her life as it was rather than waiting for her happiness. She wished, as my friend Tess wrote, that she could have told herself,"This is your life, whatever happens." Not "This is your life, but only if you have a baby."

I'm also trying to figure out how one finds the balance between holding onto dreams and letting them go. How do we decide when it's time to let a dream go? How do we, while holding onto a dream, still live our lives to the fullest? If we can't have the dream we want the very most in the whole world, how do we re-frame our life? How do we live a meaningful life in spite of whatever happens? How do we let go enough to just 'wait and see' if the dream unfolds or not?And accept whatever happens?

'

Almost eight years later, I am still struggling with many of the same questions.

Except that my health is different now. And I'm in a committed relationship.

This opens the door to ask if "Daisy" (a child) is still a possibility.

Just last year, on my anniversary of getting sick, I wrote:

I Feel Sad About Babies.  I still feel sad about not being a mom. Some days it feels like a cruel joke that so much healing is occurring at the end of my childbearing years.  This is made even harder when I look into the eyes of the man I love and think about how I had always dreamed of having a child together with my life partner. I am keeping my heart open to what life has to offer in the way of children. Adoption. Or maybe no children at all. How far can my healing go? Can I reach a point of being well enough to care for a child (with the help of a village)? How much can I ask of a partner? Of family and friends? I don't know. I'm still not at peace about this part of my life. Just today, I read David Brooks's editorial piece Hearts Broken Open, in which he discusses finding life's meaning. "I was struck by how elemental life is," he writes. "Most people found their purpose either through raising children or confronting illness and death." Even my Ph.D. pioneer of a mom would say her greatest accomplishment is having me.

Oh, the questions. The aching, raw, emotional, overwhelming, terrifying, exhilarating questions.

Am I still waiting for Daisy? What does a meaningful life look like without Daisy? Have I already found my meaning through illness, as David Brooks mentions? Is Daisy a possibility now? How do I live in the present and enjoy it for what it is? If Daisy is a real possibility, is it still what I really want?  Will it ever not hurt to miss out on motherhood? Will the ache ever go away? Would a life without Daisy actually be a better choice?

This is my life, no matter what happens. I want to be at peace with that.

Blessings,

Emily

Welcoming Our Hillary Campaign Staffer!

Mom and Eisha

We are so excited to welcome Eisha, a Hillary campaign staff member, to stay with us for the duration of the election season!

Melissa and Eisha

While I was napping Monday afternoon, Eisha arrived with another staffer, Melissa, in tow.

We had a lovely dinner with Eisha and got to know her a bit--she's fresh out of college, smart, enthusiastic, polite, and ready to work really hard for Hillary. And, thankfully, she loves the dogs!

Eisha has settled into my den for the duration of her stay, and we hope she will make herself at home. Hopefully she'll get a few breaks here and there for us to share a meal with her, but these folks work all hours of the day, seven days a week. 

Eisha, Gershwin and Me

I'm really excited that Mom and I feel that my health now allows us to host someone for this long during the campaign. It feels like a perfect way to help with the election. Eight years ago we also hosted, but only for a short time because my health was too poor.

Welcome to our home, Eisha! We look forward to getting to know you and being your host family!

Thank you for your hard work to help elect Hillary for President!

Blessings,

Emily

Walking

My Feet In The Ocean!

My Serengeti Badge! 500 Miles!

This little badge from Fitbit appeared in my inbox last week.

I'm amazed and excited to reach 500 miles! I don't care how long it might have taken me, I just care that I. Did. It!

Walking On the Beach with T and G!

For my 17 year anniversary of getting sick, I got myself a Fitbit Charge HR. 

Over the past year or so, I've been working to increase my steps.

This started with just walking more steps around the house.

A good day might be 2,000 steps. Tops.

While at the beach I started walking. Bit by bit.

I started walking 1/5 of a mile.

Then 1/4 mile.

Then 1/3.

Walking at the beach was perfect because the climate was temperate and the ground flat.

When we left the beach I was walking about 3/4 of a mile most days.

Walking!

And then...

I got to a mile!

I LOVE to Walk in the Water!

Now, I regularly walk a mile as many days of the week as I can.

I have good days and bad days. Good weeks and bad weeks.

Some weeks I can walk a mile almost daily. Some weeks I can walk a 1/2 mile here and there. And some weeks I miss most days completely.

It's Great to Be Able to Walk the Puppies!

Still, I can walk ONE mile. 

G and I Go In the Waves!

It feels incredible to walk again.

I missed it so very much.

For as long as I can remember, walking has been something that brought me incredible joy and peace, serving as an emotional, physical and spiritual form of healing.

Now that I can walk again, I crave it. I miss it when I can't do it. 

As my friend, Kristina said: "Movement is a joyful, uplifting thing."

Getting Our Toes Wet

The fresh air. The feel of my feet against the ground. The bounce in my new step. Holding the dog's leashes in my hands. Saying hi to all of the neighborhood dogs. Walking with Mom or a friend or holding hands with Kiernan. Seeing all of the neighbors and stopping to chat. Watching the sky. Hearing the neighbors cheer me on and rejoice in my healing. They say: "Wow! I'm so happy for you!" Their jaws drop. I laugh and smile and we all share in the joy.

It makes my heart and soul happy.

Blessings,

Emily