Cocoon

These last few months I've had very little desire to write or talk to anyone, which is why I haven't posted anything in a while.  Even though the isolation exacerbates my loneliness and the pain I've accumulated by going through my loss alone, living inside a cocoon is safer than the alternative. When I talk to people, it seems as if no one can say anything right or what they say is timed poorly.  I end up getting offended or become so overwhelmed with sadness and grief I can't function. And with my daughter's due date approaching combined with not having conceived yet, I can't return to certain relationships or every day life as if my experiences and losses didn't happen or matter.

So right now I'm not a good friend, wife, or daughter.  And I don't want to be.  I am so tired of being accommodating that I've given up on things that don't center on what I am enduring.  My therapist told me it's normal to feel like that and it was good to hear someone say it.  In fact, I got a lot out of this morning's session compared to previous ones because it was very reassuring to have someone tell me my reactions and emotions are expected.  Having someone understand why I would be upset over specific and general situations was a relief because someone finally understood why losing a child is tragic in nature and devastating to the mother.  Most of the people in my life have treated my daughter and I with very little care or concern and it hurts.  But I'm also angry, which has shaped how I see people.  It's made me step back from relationships.

My therapist said my loss is still too new and that things are going to be difficult, especially with it being December.  But that it's okay.  It's okay that I haven't moved on.  It's okay that I'm focusing on me.  It's okay that I have new perspectives and expectations of people.  It's okay.

Rainbows

I don't know if this is the normal route a person takes when coping with baby loss, but for weeks I have been bouncing back and forth between a surge of hopefulness and melancholy.  Like a manic faith positioned against despair.  But a few weeks ago I crashed and I've been stuck crying inside my own bubble.  Crying on my mat in relaxation yoga.  Crying on the bus.  In the doctor's waiting room. To the staff at the hospital.  Crying from looking at my husband.  At his hands and feet.  I've been full of salt and snot.  And when I'm not crying, all I think about is a rainbow baby.    

When I was pregnant with Nahuatl, my head was full of doom.  I was cautious even before her diagnosis. It's as if I was waiting for misfortune and I couldn't bring myself to experience anything good in case it was taken from me.  But I think my approach limited the moments I had with her (the moments that were rightfully ours).  I regret how negative I was and I'm trying not to be like that anymore.  So I've been knitting baby clothes because I am hoping for a rainbow.  It comforts me.

I still have many fears and personal questions.  Questions of right and wrong that won't ever get answered (i.e. is it right to try again).  But I am tired of over analyzing and trying to control cosmos. Anything can happen, but I don't want to see it as always getting the brunt end.  Anything can happen and that's just the way it is.        

Baby Names

Naming a baby is tricky because you have to think about derivations.  Sometimes a nickname is worse than the original, so before I got pregnant I thought about how to control that.  It was impossible to come up with a boy's name I liked, but I knew what I wanted to name my daughter if I had one.

My husband's mom comes from a town in the Mexican state Nayarit and I always liked the way it sounded.  I thought Naya for short would be perfect and my husband liked the idea because he lost touch with his mom when he was younger.  He took naming our baby after her as an homage and it made him feel good.  So we agreed if we had a girl, we would call her Nayarit.  

But once we received a poor prenatal diagnosis and the amnio showed that she was a she, I didn't know what to do.  My therapist said naming her would help with the grieving process if we decided to terminate the pregnancy, but my husband couldn't bare to name her after his mom because it was too sad for him.  I never asked why, but I wondered if Nahuatl's diagnosis represented the dysfunction between him and his mom.  And even though I didn't know for sure, I had to respect my husband's feelings.  A father grieves differently than a mother and I wanted to help him as much as I could.  But I wouldn't give my daughter any name just for the sake of moving on.  I wanted to put care into it.  So I went through traditional Aztec names and found the language Náhuatl is sometimes used. Though Náhuatl literally means "someone who makes an agreeable sound (someone who speaks my language)," some sites indicate Nahuatl depicts the migration of Mexican Indians by meaning four waters. And since I'm a sucker for meaning, we named our baby Nahuatl.  

Now that she is gone, I am compelled to do things for her.  I make sure she always has flowers (we decided her color is purple).  I kiss her everyday.  I look at my ultrasounds and touch her handprints/footprints frequently.  I rub the foot that was missing a toe.  I find ways to share her with people.  And I buy her a variety of memorial pendants.    

But a vendor has to replace one of the pendants from the necklace I received today because Nahuatl's name was misspelled.  And it's funny because I was upset at first.  I was initially horrified looking at it and couldn't understand why everything always goes wrong despite how hard I try to make life work. Nahuatl's chromosomes didn't separate right after doing everything I could to ensure a healthy pregnancy and now someone misspelled her name after leaving specific instructions at the check out. I spent all that time thinking about nicknames and choosing a new name we cared about, but at the end of the day Nahuatl was processed as Nahuati.

I sat with it for a while and I had to laugh.  A typographical error for a meiotic defect.  No matter how much I try to control events, I can't.  Some days this upsets me.  While mothers push baby strollers, I'm the one standing in line purchasing purple flowers.  But sometimes I can breath through it and find hope in acceptance.

The First Step is Always the Hardest

Your mind will answer most questions if you learn to relax and wait for the answer. - William S. Burroughs

I think the body heals faster than the mind.  I had clearance to resume normal activity 2 weeks after the procedure, but I had incredible reservations.  I was worried about my health and I wasn't sure what level of activity would be pushing it.  My endometrial lining was still healing and my nutrition had been compromised by how hard the pregnancy was.  So even with my doctor's evaluation, I was concerned about what resources I could spare on exercising. But I've coaxed myself into at least one routine each day and I think it has been beneficial on all levels.  There is one activity I've been having a difficult time with though.


My doctor didn't identify all the things I could jump back into, but sex was included from the few she named and it has not been easy.  Sex is a trigger.  It represents Nahuatl and what surgeons did to her. Allowing anyone to be where she last was feels debasing.  Sex makes me hypersensitive and aware of how different I am now that this happened.  And it makes me feel as if I am doing something wrong by trying to return to normalcy. It also means attempting to conceive again knowing that another trisomy event could occur and I don't know if I could cope if it did.

I've read on several support forums the right time to try again is when your desire for another baby outweighs your fear.  Taking my age into consideration and how much my body aches for the baby I lost, I don't know if I want to wait for that to happen.  It's cruel to think I can replace one life with another, but having a second will not only give me the baby I have wanted for years, it will also help me get through losing my daughter.  But I'm still scared.  That one percent feeds my apprehension. Though my perspective on livelihood with regards to trisomy conditions and my views on what I believe is the best choice for my child have not changed, I don't know if I could make the same decision again. And that concerns me because I don't think it's fair to a baby.  So my mind is twisted over what I want to do and what I think I should do.  Luckily my period hasn't returned yet.  Nature has provided time for silence.          

A 360 Degree Turn

The last couple days I have been keeping myself busy by going to work with my husband.  He works for a delivery company so we're on the road for most the day jumping from location to location delivering books. Normally I don't like leaving the house, but it's good going with my husband because I've been in a strange mood the last few days.  I've been abnormally calm (almost sedated). I'm not upset, but I'm not happy either.  There is this empty feeling that becomes somewhat oppressive by the middle of the day and my mind begins obsessing over what happened and wanting another baby.  It's overwhelming when I'm alone and so I think I have to keep myself busy so I don't turn catatonic.  It's not that my thoughts disappear when I'm involved with something, but I'm able to control how much they affect me when I am. And right now I'm trying to manage my mood naturally.  My therapist wants me on anti-depressants because she thinks my history suggests a biological predisposition to depression, but I would rather try alternative routes as I believe my state to be situational.  Who wouldn't crawl into his/her mind after the death of a much desired baby?

It has been difficult staying active though.  As much as I need to get involved, I have to push myself to do anything because everything feels like bullshit. Socializing, reading, hiking, working out, knitting, tackling and reinventing gourmet recipes, all the things I used to do feels like manure.  But I've been managing a few activities on the days I am not with my husband.  I have been running/walking or riding the stationary bike while watching old favorite movies.  I can't push myself to knit anything because my last project was a blanket for Nahuatl, but I have been searching for sewing patterns.  I'm curious about making my own clothes and I think easy designs will help reclaim an interest in being creative.  When I was younger I wanted to be a fashion designer, but I didn't get into one of my choice schools and I opted for plan B.  So it would be nice to revisit who I was when I was 17 especially having gravitated so far from that person.

Sometimes I wonder if Nahuatl's condition and the choice I made for her had to happen because I was going in the wrong direction as an individual.  It sounds heliocentric, but I mean that with regards to how I was mistreating people.  Making my goals a top priority at any cost sacrificed many relationships and so I can't help but think that cosmos or whatever is out there is redirecting me for a future benefit.  Perhaps this was needed to make me evaluate and grade parts of my life I've ben neglecting.  Not to trash my goals, but to make decisions about who and what is more important so that I change the way I work toward them. Was this to balance me out so that I can be a better mom, wife, daughter, friend, and doctor?

Or maybe it's all random and this is just me rationalizing to cope with something bad that happened. But trying to make sense of it and rediscovering certain interests does provide a sense of renewal. Like a second chance to be better or make things right.

Why?

I only had a 1/282 chance that my baby would have trisomy 21 when I went in for my nuchal translucency test at 13 weeks.  The chances increase as maternal age climbs, but that's where I was at 35.  Yet when you put the numbers into perspective the statistics are really in a woman's favor at any age because even an event with a 1/100 chance (at age 40), there is still a 99 percent probability a baby will be born healthy.  Those are great odds.  But after Nahuatl's diagnosis, the chance may as well have been 1/∞ because higher or lower chances don't change being that one no matter what the denominator is.  

And if that's the case, what was so special about me?  Why was I that one person out of all those healthy births?  Medical professionals and genetic counselors tell me it was a fluke, but random isn't a good enough answer.  So I scream why without saying anything else.  Or I regress in time looking for something bad I did to deserve what happened to her.  I wonder what I didn't do enough of or if I was too much.  Sometimes I wonder if I was being tested by someone or something.  If it was my life course to make me a better person or an appreciative one. And without answers, I get venomous.  I glare at mothers who smoke while pushing their children in strollers.  I get upset at women who have multiple unplanned pregnancies with different fathers and mothers who walk out on their kids.  It's not that I judge anyone for their choices.  It's that I don't understand why their choices led to a healthy baby and mine didn't.

I think that's why I stopped participating in things I believe in.  I used to care about sustainability and supporting local commerce.  I ate organic and strove for a healthy lifestyle.  I donated to social causes and I kept myself informed.  I wasn't perfect, but I wanted to leave the smallest imprint on our environment and I wanted to be socially responsible.  So I tried.  But now it's exhausting and I find it unimportant.  I can't bring myself to consider the world around me when I see careless people happy. I don't have enough energy to push myself because my stores were depleted when doing what was best for my daughter.  

     

    

Something to Hold Onto

I told my therapist the feeling of losing a baby won't go away.  It's always with me no matter what I'm doing. When I'm brushing my teeth, when I'm cleaning my house, when I'm on the bus, I'm always thinking about her. I wonder if she had a head full of hair like me.  If she looked more like my husband or had my grandfather's eyes.  I imagine myself kissing her little belly and I can see her wearing diapers with her long legs from my ultrasounds coming out of them.  And when I catch sight of my husband's hands, I think about how she had the same ones.  

But for some reason there are certain tasks I can get lost in.  I search for memorial pendants and patron saint medallions (though I am not religious).  I scour Etsy and Ebay looking for the right ones.  Meaningful necklaces with the perfect pendant or collection of pendants tied to babies and infants who were lost in pregnancy or after, as well as patron saints of children. If I focus my attention on searching for and buying these items, I feel better about life.  Even with a limited income I can't stop.  It gives me peace.      

And I can't help but think of the trailer to The Rabbit Hole when I do these things, a film about a couple who lost their child. In one of the scenes the mother asked if it (the pain) ever went away.  The person she was speaking with said no, but that it eventually becomes bearable.  I think that's what I am waiting for.  And that things like photoshopping Nahuatl's handprints and footprints for family and ordering prints of her ultrasounds so I can hang them up help me in the interim.  So even though I can't explain why buying a necklace makes me feel okay, it's something I can hold onto until life is bearable again.  

Virtual Run for Pregnancy and Infant Loss

I've been searching for pregnancy and infant loss awareness events and for any dedicated to chromosomal abnormalities. But I haven't found many of the first and nothing of the latter.  I am not sure if the political environment in the US makes it taboo to sponsor events for pregnancies that were terminated for medical reasons.  I do know several organizations include pregnancy loss and stillbirths at any gestation and for whatever reason when providing support to parents. So perhaps full inclusivity is why I haven't found anything specific to genetic defects.  But in any case, I did find a pregnancy and infant loss run/walk that offers virtual participation to those who are not in the area. My husband and I will be running.  

If you are interested in participating because you lost your loved one or you would like to help support family or friends, you can sign up by clicking on this link: Let's Not Be Still.   

I Loved You the Moment I Knew You Were There

Last week I would have been 6 months pregnant.  I only had 3 more months at that point and I've been filled with anger thinking about it.  I've been breaking things around the house. Smashing CDs with saved photos.  Throwing out yearbooks, photo albums, and scrapbooks.  I've hidden all my schoolbooks and pastime literature in closets so I don't see them.  I don't know why I do some of these things, but I do know I want no memory of my life right now.  I keep telling my husband I want to live in an empty house with bare white walls.  The sight of personal belongings suffocates me.  So I've been cutting up my favorite clothes to get rid of them.  My husband has now hidden the scissors on me.  But it doesn't matter because whatever I throw out doesn't take away the pain.

Sometimes I think I'm being ridiculous.  Or that I'm going to regret how I'm acting later on.  That it could jeopardize my marriage or lead to larger emotional issues.  But a part of me doesn't care.  I'm just not ready to be me.  

Coping

                       



When I first saw this movie, I was surprised by how good it was.  But now I've been watching it frequently.  I don't know why, but I need to be surrounded by people who experienced loss (even if portrayed in a film).  Something about being able to identify with specific feelings and thoughts when I can't articulate them quiets the relentless uneasiness at the back of my mind.  Some parents can't watch or read movies and books depicting pregnancy and infant loss because it triggers their grief.  But I'm the complete opposite.  Walking outside and pretending nothing happened is more of a trigger. Wearing clothes that now hug my post pregnancy pooch is more of a trigger.  Going to the supermarket during the day is more of a trigger.  Laughing at something my husband said is more of a trigger  Not talking about what happened and accepting that some people have to make difficult decisions while others don't is more of a trigger.  The OB/GYN I saw about conceiving again had no concerns that it would happen and her no worry confidence is more of a trigger.  But watching, reading, writing, and talking about pregnancy and infant loss kind of okays the moment because I don't feel alone.  I forget the despair and I feel somewhat normal without anger.

Breaking Down & Moving Forward

"Your absence has gone through me like thread through a needle.  Everything I do is stitched with its color." W. S. Merwin 

I don't think there is any real way of getting up after losing a child. No matter what the circumstances are surrounding such a loss there is an emptiness that lingers.  And unfortunately, the decision to terminate for medical reasons comes with personalized guilt. The culture we live in only adds to it and I've noticed it pins mothers against mothers (those who did not elect against those who did).  But we all lost someone we love and struggle to move forward.  Sometimes our momentum is slow and sometimes we lose direction.

I find listening to other women on support groups comforting.   When I'm up late worrying about a misdiagnosis or wondering if my baby could have been the highly functional 1% with minimal health problems, I go through TFMR boards on Baby Center. The stories there are similar to my own and I walk away feeling as if the women from each post are holding me up and helping me inch forward.

Because the thing is ... many people don't know how to respond to a friend or a family member mourning the loss of a pregnancy, baby, or infant.  Sometimes people don't understand how losing someone in utero or a stillbirth can be devastating   Or they simply lack words to convey their sorrow and stand back. So it's difficult to recover because you're isolated and overwhelmed with grief. And it feels as if you're experiencing this alone. That's why I turn to support groups and counseling.  The idea of better hasn't happened yet, but the only security I feel comes from knowing I'm making an effort to find it.  And that others are going through the same pain and many women have found a sense of peace despite it.

Walking a Non-Linear Line

Last week was bad.  I was all over the place.  It started by going to the doctor for a follow up visit. I had a mixture of emotions seeing my uterus on the ultrasound and speaking to the doctor about when I have clearance to conceive.  Not seeing a little bub was difficult to come to terms with. And I felt guilty asking when my husband and I could try again.   If it weren't for my age and where I am in my life, timing wouldn't be so important.  I waited so long to start a family I don't have the luxury to put my fertility on the back burner (especially since I had concerns when trying for Nahuatl - and I am almost a year older now).  But I can't help but feel like I'm minimizing Nahuatl's time on earth thinking about another baby.  And as I went from grief to this guilt, fear began to grow.  Fear that I would never conceive again.  Fear that I would never have a healthy baby.  

In my mind, my eggs are old and grey like the strands that creep through my hair.  I have a 1% chance that a chromosomal abnormality could happen again after having one trisomy event, but I need a professional to make me feel silly and give me hope.  Someone to tell me my age does not mark the end of my fertility and someone to make me see the 99% chance of having a healthy child.  That is the only way to control my anxiety.  So I made an appointment to speak to an OB/GYN about my egg count and quality.

I've also decided to take a year off from school.  Not only for financial reasons or to heal emotionally, but to find personal forgiveness.  The medical community does not know definitively why chromosomal defects occur.  My therapist assures me they are flukes and that I did nothing to make it happen.  But I can't help feel responsible.  That not having children earlier and letting myself live an unbalanced life did something to my egg.  School always came first.  It had precedence over my health.  My marriage.  My family.  And my baby.  Up late when I should have been in bed.  On campus when I should have been resting.  I pushed myself to study more, to sacrifice more, I let the stress overtake me.  And this loss has made me regret living like that.  Time that I can't get back and events that cannot be erased.  So I am going to spend this time finding peace and eliminating personal stress.  I am taking a meditation and relaxation yoga class in September to help. 

I made a promise to Nahuatl.  I told her I will never choose school over my babies.  I still want to pursue my goals and I will, but not in a way that sacrifices my health or relationships.  I will work my goals around my family not my family around my goals.  And I will never break that promise to her. 

Funerals & Cremations

After the T21 diagnosis, I grew accustomed to sleeping things off.  When I wake, it takes me a while to remember the current environment and the temporary confusion helps me deal with some of my emotions.  But some days are more difficult than others and sleeping resolves nothing ... like today.

Today I had to pick up my daughter's remains from the funeral home where she was cremated.  It was awkward walking in.  I was aware of every stride.  How I was posed.  I didn't want to talk or breathe.  Even letting the director know who we were and why we were there was forced.  The words "I'm here to pick up my daughter" were awful.  They sounded foreign and they bruised my tongue.  Their finality and coldness triggers melancholy.  But that is what I had to say to move forward.  

When the director left so that he could retrieve Nahuatl, we were in front and I saw all the different sized urns showcased on the wall.  They were overwhelming.  But it wasn't until I looked upon the tiniest urn that I began to cry.  I kept thinking urns shouldn't be that small.  My anguish increased when the director returned with a tiny little bag that had a tiny little tin can inside.  Nahuatl used to fit inside me and now she lives in a tiny little can inside a tiny little bag.  

I'm good at compartmentalizing my feelings.  Finding a space and never thinking about them again.  And that's all I want to do with today.  But my therapist says that's not the way people heal.  That the grieving process lingers when compartmentalizing.  That's why I'm allowing myself to feel this.  Well ... partly why.   I trust my therapist and I want to be happy again, but I also want to think about Nahuatl without feeling empty.  I have no stories to tell of her.  Just that she was a hell of kicker for having four toes on one foot.  And that I pictured her bouncing her head up against my uterus whenever I sloshed her around when running for the bus.  But I have no real memories of her life like where she spent her 1st birthday.  No pictures of her first laugh, her first experience touching water, or the first time she fell asleep in my arms.  She lived inside me for 5 months.  So I don't have any life stories.  But I have the life I dreamed for her, holidays, outings, travels, and I want to be able to think about them without feeling robbed.  Thinking about her keeps her from disappearing.  And that is important to me because her presence is every part of my family as my husband and I are.  She is very much loved and was very much wanted.  So I am hoping that allowing myself to go through this grief and loss will somehow get me to accept what happened so that I can think about her without growing silent.  

 

The Journey

I spent 5 years planning my pregnancy, 6 months trying to conceive, and over 5 months carrying my baby girl.  I was emotionally ready at 30, but financially unstable and in the middle of a career change.  So when my husband and I made the decision to finally start a family, it was a big deal for us (especially for me).  I spent two years preparing my body - tackling food sensitivities and hormone imbalances, going organic, starting a prenatal vitamin regiment, omitting certain ingredients in skincare, haircare, oral care, cosmetics, and even perfumes.  Then two months before my 35th birthday, I couldn't wait any more. 

It's funny because I spent so much time worrying about being able to get pregnant, that I was shocked by how scared I became once I did.  I was excited over my BFP, but I started panicking soon after.  We planned every aspect of this pregnancy yet I second guessed juggling medical school and motherhood, financially caring for a baby, and being a good mother.  The fears only subsided once I got my initial T21 analysis at 13 weeks (via NT and NIT tests).  At that point, all I could think was that they were going to take my baby away from me.  And it sent an indescribable ache through the pit of my heart as if someone was skinning me and touching my nerves.  I didn't want it to be true, but I knew the amniocentesis would confirm Down Syndrome.

Between 17-22 weeks, I agonized over what to do.  My daughter's kicks were pronounced and frequent.  And through them, I grew closer to the little person growing inside me.  That is when I became a mother and separating my emotions from reason became difficult.  I wanted the best for her.  I wanted her to have the best life.  Not a world full of hospital visits, on-going medical treatments, possible heart surgeries, leukemia, early dementia, or emotional and developmental challenges. I didn't want her wellbeing passed on to strangers when my husband and I died or make future siblings responsible.  I worried about her future, her livelihood, and her health.    But I also wanted my baby and thinking about letting her go was/is torture. 

Knowing what the best thing is for your child is not simple.  It isn't an easy black and white yes or no.  It's personal, varies between parents,  and comes with regrets no matter what choice is made.  In the end, I thought the best thing for my baby was to terminate my pregnancy.  But it came with guilt.  Guilt that I made the choice to end her life.  Guilt that it was most probably my egg that had the meiotic error.  Guilt that I waited as long as I did to try to conceive.  Guilt that my pregnancy was so difficult, I was hardly feeding her (I was barely eating from 6 weeks to 19 weeks).  And guilt that I doubted my love for her when panicking about becoming a mom. 

My therapist says this is normal, but knowing my reactions are expected doesn't minimize them.  It doesn't fill that emptiness that comes when your child disappears.  It doesn't heal.  It doesn't nurture.  It doesn't give me Nahuatl.