Everyone’s Hardest Things

It’s hard to walk around with a billboard showing exactly what your hardest thing is. It’s hard for it to be public and constant. Everyone has hard things, many just hidden inside; and that’s got to be hard too. I went to a baby group and I explained that Margot has developmental delays, which was hard, and at the same time I didn’t know what hard things the other moms had going on inside because Margot’s disability and my thing are somewhat expected topics of the group; theirs, conventionally, are not.

When you go to the Emergency Room, you’re asked to rate your pain on a scale of 1 to 10. If you don’t speak English or you’re not developmentally able to use such an abstract concept, you’re given a concrete rendering of the scale, as below.

What I realized is, it’s incredibly unbiased: there are no words, just faces. It doesn’t say that a 10 is being held in a Nazi concentration camp, ISIS torture chamber, or by Boko Haram… You supply the definition of 10 for yourself. Because each person’s 10 is different and to define a 10 across the board would make triage impossible. The hospital needs to know where you, individually, are at, and I’ve realized this concept translates to daily life as well.

If I have a friend who seems to have “the perfect life” on the outside and then her children are simultaneously diagnosed with degenerative hearing loss and she grieves it like a 10, that’s because it is a 10 for her and no amount of prior “perfectness” is going to soften that blow. She has not yet personally faced such a blow, no matter how many families she has seen deal with one, and so, for her, it is really and truly a 10 and my level of compassion cannot be based on my own scale or contempt for how much easier it seems. I must empathize with the raw pain of getting your 10 redefined. I know that pain and I can be sympathetic toward it, regarding her with tenderness toward her 10.

Comparison is the thief of joy, and empathy. It is the breeder of contempt, malediction and desolation.

When I am present with Margot, I am not always experiencing my bad 10. In fact, I am now and again experiencing that ever-revising good 10! Just as I expected when I was becoming a mom, each new step brings new joy and pride and awe. The fact that the steps are (painstakingly) far between does make them very sweet indeed.

Mindfulness educators write often about tenderness. As a concept, it was very hard for me to grasp “tenderness toward oneself” and “tenderness toward others.” What does it mean to be tender? I still don’t entirely know, but I think I’m getting a glimpse. I think it’s recognizing the feeling beneath the experience and being compassionate toward that feeling because I have been there too. It’s tenderness toward the feeling of being at a 10, not judgment of what the 10 is; that’s out of anyone’s control. We don’t choose our 10s, we just have them. And when someone is at their 10 it sucks just like my 10 does and your 10 does and the horror story 10s do. That’s enough. It  will get revised again later, and that’s just another opportunity for compassion, on everyone’s part.

 

The Time is Ripe

“In times of great adversity or difficulty, one has the most potential – it offers the most perfect opportunity – for attaining enlightenment. So lately I’ve been thinking what a ripe time this is. But, of course, as we know, difficult times don’t always lead to enlightenment.” – Pema Chodrön

Facing the potential of losing my baby was heart-wrenching for both the past, present and future it represented.

In the present, I was in agony to see her suffer, hungry, tired and riddled with medication.

Thinking about the future, I was desolate to think of being without her.

And thinking about the past, I was regretful about all the things I hadn’t done with her.

So when she came through and we took her home, I was surprised by the sense of vigor I felt emerging. It was an acceptance of things that had come to pass mixed with a thirst to do better going forward. At the same time, I received an email forwarded from a friend who had reached out to an energy reader to send healing vibrations our way as well as to give a reading of the situation. I didn’t want to take in what she had to say, but this was the same woman who had informed my sense of Margot’s path and the idea that she had chosen her body. So I couldn’t discount what she had to say just because it was hard to swallow:

I was so sorry to hear about Margot!  I sent her healing for quite a while this evening, and I noticed that she has two powerful female guides standing on each side of her.  They are serving both as healers and also as ever-present guides who will help her deal with the challenges that face her in this life.

Margot is a really soulful, right-brain, creative being.  I saw two past lives—one as an Italian woman opera singer; the other, a very feminine Japanese woman, who painted and wrote poetry.  I sensed many lives as an artist.  This means that it is possible that she could have a fulfilling life this time as an artist, even if she has some learning disabilities.  Her guides were encouraging her not to give up on this body, and these guides and mine did a lot of work on grounding her and connecting her spirit more strongly with her body, especially her nervous system.

She had some pain in her heart chakra because of a sense of feeling not good enough.  I poured golden love into her and let her know what a beautiful being she is and that she is loved and wanted here.  There will be many people in her life who will value and love her.  She is such a deeply sensitive soul!

I will keep checking on her, and would you also keep me updated on her condition?  What a terribly painful situation for everyone!  I hope all the healing guides will stabilize her soon and the seizures will stop.

“She had some pain in her heart chakra because of a sense of feeling not good enough.”

That stung. That tore through my soul and eviscerated my sense of self. It was true. I had still been mourning the loss of the Margot I expected to be born, despite having a beautiful, wonderful Margot in front of me. How must that have felt for her? To know her mother hadn’t come to love her for who she is? But the email also came just after we had gotten home and I was both singing to her “You are my sunshine/my only sunshine/You make me happy/every day/You’ll always know how much I love you/It’s okay to pass away” with tears streaming down my face and love welling in my eyes, and I knew I loved her for exactly who she is and was resolved not to steel ourselves away in our house but to carpe-the-crap-out-of-that-diem and do everything with her just as she deserved. So I could resolve the energy reader’s reading and know that while it had been true, it no longer was, and that was why Margot had pulled through once we got home and didn’t have another seizure for over a week.

A New Normal

“Hope and fear come from feeling that we lack something; they come from a sense of poverty. We can’t simply relax with ourselves. We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what is going on, but that there is something missing in us, and therefore something is lacking in our world.” – Pema Chodrön

I have been describing Margot as “90% of her normal self” for a couple of days now. I’m thinking I should embrace this time as a new normal.

Rather than wait and hope for 100%, rather than put off for later what could be enjoyable now, I want to enjoy what we have: I have a sense of calm, of normalcy, as I sit in my kitchen listening to my baby play in her swing and can see her father’s feet kicked up on the sofa as he works and keeps an ear on her; I can hear her vocalize and know she isn’t sad or hungry or hurt but content and explorative; I feel confident knowing she is clean and warm and dry, having had a sink bath and rub down and wrap up in soft pajamas after a rousing round of tummy time and a dance party to a cover of the 90s hit “What’s Up;”  I have a fully belly from the food our friends and family brought us over the weekend; I have a hot cup of tea steaming in front of me; the world is blanketed in snow and the chimes are ringing in the clear crisp air and the new normal isn’t so bad after all.

“Why me?”

“Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know.” – Pema Chodrön

It’s a familiar refrain, “why me.” I’m not the first one to have asked it. We know there’s no answer, but we ask and ask. I’m not sure what others have done, but I’ve had to come up with an explanation to help me sleep at night. I’m sure it’s full of plot holes and fallacies, but it’s getting the job done for now. I consider it a working philosophy, to be explored and refined through reading, counseling and life experience.

I’ve had to give Margot agency. The idea that things only happen to us is too much to bear. If, as I do, I have room in my outlook for a soul, and I also have room for it to be on a journey spanning more than the physical incarnation in which it presently experiences, then I have room for rebirth and can find comfort in choice.

Interestingly, what started out as “why me” evolved into “why her” and then circled back around to “why me.”

At first I felt like my Margot died. In a way, she did. The fantasy of Margot I had created did die; it lived only in my mind and was never reality, but my idea of who and what Margot would be died. Of course, it was destined to die no matter what, as do all of our fantasies about the future: just as a parent may attach hermself [his or herself] to the idea of hir [his or her] child as a doctor or inheritor of the family business, I had attached myself to the idea of Margot as a typically developing child who would “follow her own path” while passing through some or all of the upper-middle class, white, abled American rites of passage (getting her license, graduating from high school, going off to college, getting married, having a child or children, finding a sense purpose in her work). I had fantasized about her being a beautiful twenty-something living in a posh apartment working for Amnesty International, coming to visit mom and dad at their cottage on a river in Maine, staying up late drinking wine, eating charcuterie and discussing world affairs and literature. I fantasized about traveling to Amsterdam and Cambodia and Macchu Picchu with her. About her being multilingual and tall and slender and classically beautiful. About her being a precocious child who enjoyed sitting at the table during dinner parties. I fantasized that she would prefer ballet and cycling to typical school “ball sports.” That she would be a reader, aloof and outside the drama of teenagers.

I may very well get that last one, and it haunts me.

So I have explored the notion that souls choose their body and have come to believe the following (adapted from justarose.com, who expressed it quite clearly and with good depth): When a soul has decided to incarnate on earth a suitable human host is searched out. This match is made based on a number of factors, chief among them whether that human host is suited to what that soul wants to achieve through that lifetime. During each lifetime, souls set objectives, which vary depending on the level of experience of each soul. Further, some agreements will just affect that soul, whereas more experienced souls will often have soul agreements that involve helping others. Some souls will have joint agreements or pacts with other souls who come to earth to complete a mission or large project together. Sometimes a human host is suited to more than one soul and there may be a number of souls looking to return to earth in an incarnation that the host could work well with. At that point it is taken into consideration the best outcome for the host as well as which soul would achieve the best results by linking to that host. Different factors influence a soul’s decision; what country that person is going to be born in, the family, financial situation and so on. The life that the soul is born into has a huge impact on the ability to carry out certain soul agreements or goals. For example a soul that wants to learn difficult lessons may choose a life that will facilitate those lessons. Souls will normally choose different lives within different circumstances in order to gain a wide experience base. They may also want to be born into a family with familiar souls and this can influence a decision to join a human host if there are already souls on earth that they want to connect with or gain support from.

So “my Margot” never existed but my Margot made a choice to come into the body that my body had to offer. It was her choice; she has plans for this body and this lifetime. Those plans may very well involve me and the rest of our family and friends, in varying capacities. I believe Margot is an experienced soul who has earned the opportunity to inhabit a body which limits her ability to dwell in the past and future and instead provides her with a stronger, more mindful experience of the present. I also believe she came to be my mindfulness teacher. My body was creating her host before she entered it, and she could see the way I was living my life and used that information in conjunction with her objectives to incarnate in the physical body she now possesses. And we will all be the better for it.

This Too Shall Pass

“We think that if we just meditated enough or jogged enough or ate perfect food, everything would be perfect. But from the point of view of someone who is awake, that’s death. Seeking security or perfection, rejoicing in feeling confirmed and whole, self contained and comfortable, is some kind of death. It doesn’t have any fresh air. There’s no room for something to come in and interrupt all that. We are killing the moment by controlling our experience.” – Pema Chodrön

When Margot received the diagnosis “1p36 Deletion Syndrome,” my world fell apart. I had done everything “right,” and had expected everything would therefore be right. I had controlled my body, prepared my home, adjusted my work, done my research. I had eaten a beautiful diet, crafted a beautiful nursery, established a beautiful schedule, and reached a beautiful philosophy of parenthood.

Only, they weren’t real.

They were hopes, ideals, fantasies. And I, naïvely, thought they were within my power to control.

We made so many “decisions” about our future. We bought into so many absolutes.

And. hubris. knocked. us. down.

I could have seen it coming. I had a taste of the suffocating death that comes with the satisfaction of ticking everything off your list. You didn’t think people ever achieved that, did you? I had the bag packed, the closets emptied, the garden weeded, the grass seed sown, the fridge full, the pantry stocked, the laundry done, the bills paid, the insurance purchased, the will drawn up, the out-of-office set; and the list went on. My due date came, and went. And I struggled to keep the house standing at attention, not dirtying a dish, not shedding a hair, not dropping a petal. And I became restless, anxious, and bored. I became obsessed with maintaining a diorama instead of enjoying the late May sunshine and tulips.

Luckily, I have been doing some soul-searching and have begun to be at peace with our trajectory. Margot has, in fact, saved me from the death-existence I was creating, but before I could begin to see that, I had to come to terms with “why us?” Little did I know, what I would never get back that which I had wished away.