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

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

Transformation

Butterfly on our Zinneas Last Fall

We delight in the beauty of the butterfly but rarely admit the changes it has gone through to to achieve that beauty. 

--Maya Angelou--

When I ventured out for a new kind of massage last week, I discovered a lovely plaque with this Maya Angelou quote. I spent the entire month of January in my cocoon. If it wasn't for several necessary medical and therapy appointments I would still be in my cocoon! I spent as many moments as I could in my den, in my recliner, nestled underneath my heated blanket, listening to music and engaging in quiet activities such as knitting. 

I found myself craving quiet time alone (which most of you know is the opposite of my usual self!) in which to pour all of my energy towards transformation. Giving myself the 'space' to process, discern, take care of myself, create, listen to music, and be quiet is something I have not done since very early on in my illness. In these times of quiet, the greatest and most beautiful changes are happening for me.

I feel a lot like a butterfly who still needs more time to grow in her cocoon. I've found that learning to live my life entirely differently and implement those changes to be all-consuming, hard work. Yet it is also liberating and rewarding. Jeannine has been teasing me that I am moving at mach speed because I am changing so fast and calling me "Mach" for short. :) 

As January ended and February arrived, I found myself laughing more and delighting in more simple joys. I've made a concerted effort to seek out joy, and for the first time in a long time I've felt myself laugh more readily and feel more joy, even in the midst of the sadness, grief and anxiety that have gone along with this change. 

To be honest, in some ways, I can't wait for the 'medical stuff' of February to be over, so that I can crawl back into my cocoon and continue on my transformation.

Blessings,

Emily

Paradigm Shift

All Photos: 36 Year Old Weeping Cherry Tree in our Front Yard; Fall 2011

I have spent the majority of my time since becoming sick suspended in waiting. I have framed my world around the phrase: "When I get better...". I have continued to operate as if I am not sick, pushing myself to such limits that led me to completely burn out, both physically and emotionally.

Living this way brought me to a place of extreme emotional debt with constant feelings of guilt, feeling overwhelmed, and never, ever feeling like 'enough'. I reached a point of emotional exhaustion that I had never known before. 

In the past few months I have found myself in the midst of a major paradigm shift. 

My focus now is on adapting to and being accepting of my limits. Rather than viewing this as hopeless, I find it more hopeful than waiting for something that may or may not come. In some ways, as the famous Buddhist monk Thich Nhat Hanh, hope can take us out of the present moment, diverting our attention to the future.

What I realized is that if I am to survive this illness, I need to make major changes in how I operate. 

I believe that even if I remain this sick (or get better or get sicker), I can find ways to live well with illness. I want to find ways to live each day with what I've been given, not focusing on what I think I 'should' be doing or on what I cannot do. 

I'm now immersed in finding ways to live well with illness and live a meaningful life while honoring and respecting my limitations. While I have always focused on living a meaningful life, I haven't done it within the realistic constraints of my illness, which is what led to my feeling so completely overwhelmed day in and day out. By the time I finally found a therapist who 'got it', I was saying: "I know there is a better way to do this. I know there is a way out. I know there is a way to be sick and still live well. I just need help getting there."

Letting go, learning new ways of being, surrendering, accepting, learning to feel like I am 'enough' may just be the hardest work I've done yet! I'm truly looking forward to creating the best life I possibly can with whatever my health may bring.

Blessings,

Emily