Trauma…anger…understanding…acceptance

I am grateful. Grateful for the many gifts life has given me- health, family, work, financial stability, friends, freedom. It’s how I get through my days.  But every now and then I need to process some uglier feelings. I think it’s important to show that grief has many faces- that the instagram and pinterest-worthy grateful griever is an unrealistic ideal.  Yes- I am grateful, but I am also sad and angry and jealous and frustrated. I hate that I feel the need to preface this post- but I want people to know I”m not angry all the time…it’s just one of my feelings, perhaps the most difficult of them all.

***

PTSD is common after perinatal loss. I haven’t been diagnosed with PTSD but my therapist and I talk a lot a bout how the trauma of my pregnancy with Mabel and losing her after birth still affects my daily life.  I’ve struggled with framing my daughter’s death as a trauma- I feel this immense pressure (self imposed) that since I had so much notice- months- to prepare for my baby’s likely death, I should have handled and still be handling it all better.

But the tentacles of trauma reach long and far, in ways that surprise and frustrate me. I still cannot react to pregnancy news in the way I once was able, in the way that I wish I could.  I recently learned that many of my close friends were pregnant- life events that are wonderful.  But instead of being able to share in their joy, I retreated because I found the only feelings I could express were jealousy and even anger- reactions my friends did not deserve at all.  Even though I’ve sat with these pregnancy announcements for months I still feel angry. It’s a misplaced emotion, I know.  Of course I’m not angry at my friends for being pregnant. I’m angry that my daughter died and all that came with her death. I’m still angry.

• I’m angry that I had such a traumatic pregnancy- one emotional blow after another
• I’m angry that I lost the blissful ignorance right away, never allowed to think “oh everything will be fine” with her pregnancy or my subsequent pregnancy- and watching others with their well deserved bliss brings up that anger.
• I’m angry that my daughter didn’t get a baby shower. I’m angry that I cancelled the shower. I’m angry that I didn’t celebrate her more. I’m angry that I didn’t know how to, because there is no handbook on how to do what I did. Baby showers are still hard- a reminder of what I lost.  Sometimes I go, sometimes I don’t.
• I’m angry that making mom friends is hard because bringing up my dead daughter always makes the get-to-know-you small talk awkward.
• I’m angry that others don’t have to struggle with these issues, making me feel even more alone.

And as I grapple with this anger, I struggle with the need to rely on my friends to help me process it all and dealing with their misunderstanding.  No one has said to me straight up “waiting for and then watching your daughter die is not a traumatic event.” However people have said to me “Really? You still feel that way? Even three years later? Even after Felix?” When I hear those sentiments, I am reminded that those who have not lost a child will never understand- how could they? I’m slowly realizing I can’t expect others to understand my trauma, my reactions, my anger and my grief, as foreign and weird as they may seem. But I hope that they can accept it, as part of who I am.

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Are you angry? How do you cope?

 

 

 

Bravery

Sometimes I need to be reminded that I’ve done some hard things. I have survived. I am brave. I am brave because….

I hung up the phone, the news of a Down Syndrome diagnosis for my baby still ringing fresh in my ears. I took a deep breath, basked in a moment of acceptance and relief, and then continued on my day, keeping my personal life and professional life separate. I continued seeing my patients that day, all pregnant with healthy babies, all while holding my news secret.

I said yes.  Yes to a baby with special needs.

I walked into the CT Down Syndrome Congress annual conference, scared but trying to keep an open mind to learn all I could about what life is like parenting a child with Down Syndrome.

I left the hospital with a likely life limiting diagnosis for my baby, choosing minimal fetal monitoring until the baby had any hope of survival, knowing that I was choosing to preserve my fertility over heroic measures for a baby that would likely die, knowing that I might forever struggle with guilt if she was stillborn before the set date we were willing to intervene.

I told the doctors to take out the vent and held my baby as she died.

I held my lifeless baby.

I handed my baby to the nurse, never to hold her again.

I left the hospital empty handed.

I continued to live life.

I went to my first support group, though I cried tears of fear in the hallway before going in.

I went back to work and told hundreds of people, “my baby died,” and continued to care for them with a smile.

I chose a new career path.

I talk about my baby to strangers, to try to break the silence.

I try to ask for what I need.

I had had another baby despite crippling anxiety that I might lose him too.

I’ve been to baby showers.

I’ve held babies.

I write about my feelings here, for all to see.

Why are you brave?

There’s nothing in there.

“You got anything in there?”

A hand laid on my belly, with a knowing smile.

“Any more babies?”

Since when is my fertility anyone else’s business?  I know that these comments were either well intentioned or just causal banter, but their intention still hurt.  The askers know about Mabel, which in my mind should have made them more sensitive.

I have held on to some of the baby weight.  I could make excuses for why- but they’re irrelevant.  Either you’re calling me chubby (insult) or you’re assuming I can just have babies whenever I want (ignorance). Either way, the comments make me feel like a failure. I’m failing at losing weight and I’m failing at getting pregnant.  I’m only 10lbs overweight but my abs are non existent thanks to two babies in a short time.  Though since I have only one visible baby, I feel like my body is a mismatch. I also would love to be pregnant- but I don’t think it’s going to come easy.  And since I’m still nursing, my body hasn’t given any signs that it’s ready for another pregnancy.

Hearing these comments makes me realize people want another one for me (so do I), but it feels like expectation, pressure.  It’s the reason that I didn’t tell anyone about being pregnant with Felix until 12 weeks- I didn’t want to disappoint them if I miscarried.  I know I have no control over it- but my disappointment was going to be enough.  I couldn’t handle anyone else’s.  The same applies here.  I worry that I won’t be able to have anymore- I’ve learned there are no guarantees- and my own self imposed pressure is more than I can handle.  Please don’t give me anyone else’s.

“No.”

“There’s nothing in there.”

“I wish.”

Mothers of Louise

http://www.buzzfeed.com/krishrach/a-mom-shared-the-annoying-things-said-about-her-daughter-wit

I am a “mother of Louise.” A silent one, perhaps, because I only experienced such comments while pregnant (and yes, I really did), knowingly carrying a child with Down Syndrome.  The comments are real and I’m sure would have kept flowing.  I understand people often have good intentions at heart (as they do when they try to comfort babyloss moms- it’s surprising how much crossover there is there), but words are powerful.  These corrections are not meant to shame anyone who has said an unwittingly hurtful comment, they are meant to educate.  I’m sure I have and still do say hurtful things unknowingly and as hard as it may be to hear that I’ve done so, I will try to appreciate anyone who tries to educate me.

This mom makes me proud.

In other news…

*sensitive*

I have other news. Based on my sensitivity warning, I’m sure some of you may have guessed it.

I’m expecting.

In a way I feel I’ve been living a lie not going public on the blog until now. But I have been hesitant for two reasons:

1. I want this blog to be about Mabel. I’m learning that this pregnancy is about Mabel too, so much about Mabel, so the two overlap and it’s hard to keep them separate.
2. I know there are many other babyloss moms who read and follow, who may want another child, who may be trying and not pregnant yet, who may not be able to for medical or emotional reasons, who are looking for a pregnancy-free and baby-free place to connect about their own losses. While I was trying to conceive, I saw other babyloss blogs morph into pregnancy after loss blogs and I couldn’t follow anymore. It was too painful (I know for some it may be inspiring- but for me it was hard). I would hate to cause anyone else pain. So I’ve hidden.

But I need to come out- it’ll help me return to blogging (I hope! So much more limited time with the new job and all). I can be more honest in my writing and not protective of my words. And importantly, I’m still working on bonding with this baby, recognizing that this pregnancy is real and different, that I might actually get a take home baby. Announcing it in some way is a step in that process.

At this point I don’t intend on making this a pregnancy after loss blog. Right now all my remarkable moments involve Mabel and I want to continue to write about her, for her. I may mention this pregnancy but right now only in relation to how it keeps Mabel into my life. I realize this may change over time too- and I will give warning if I need to write more about this one. For the meantime, here are some stats some of you may want to know:

 

Due date: mid July

Currently: 30 weeks.

Testing: we chose non invasive genetic testing which was “normal”

Gender: another surprise

Baby nickname: the pea

How do I feel: grateful and fortunate. Physically, tired and some pelvic pain, like with Mabel, but nothing I can’t handle. In fact, I love all the symptoms because they make it real.

So please bear with me as I navigate this blogging world, trying to be sensitive but also real.

The due date revisited…

One year ago today was Mabel’s due date. Honestly I might not have even remembered it had a friend not mentioned it yesterday. A year ago this day meant so much more. I had already birthed Mabel, but the passing of the day felt like the passing of the time I was supposed to be pregnant. One of the many concrete days that marked the end, reminding me I was not longer pregnant with my baby… the one that died. I knew I would not see March 14 while pregnant. The risk of stillbirth with Down Syndrome gave me the option for early induction, which I would have gladly taken. Then the oligohydramnios diagnosis moved the induction date even earlier- to 37 weeks. Only in my last week of pregnancy di we witch it back to 39 weeks. Mabel has us all humbled, thinking we could actually predict the day she came, when she decided to make her entrance into this world at 36 weeks. So all the planning, the dates, ended up meaning so little.

Last year I was sad on this day. Today I am emotionless. I didn’t even remember. Got me thinking…

Did I not remember the day because now her actual birthday means so much more? Did I not remember the day because I am moving forward (not moving on… I don’t like that term)?   Is this progress? Do I even try to make meaning of my forgetfulness?

Validation at work

“You’re really good at this!” she exclaimed as we finished up her visit. I had just put in a Nexplanon in her arm (a small subdermal form of birth control that lasts 3 years). It’s popularity is growing, mostly in my younger patients, who love the idea of something easy and long acting.

I smiled somewhat sheepishly. “Thanks!”

“No really, I mean it,” she went on, with her teenaged enthusiasm. “You’re so thorough and just really friendly. I’m so glad it was you who did this. You’re really good at your job, you know. It’s so cool, finding something you’re good at.”

Her words were well timed. I often have so many doubts about my place at work. Some days I feel like an empty shell. I smile and say all the encouraging words that I’m supposed to, but then go how and stew over things people say, especially around pregnancy. It doesn’t feel good to be “faking it” all the time. But on a visit like this, it was really easy. I love my teenaged and early 20s patients. I’ve made it known in my practice that I have a special interest in the adolescents, so my staff and fellow colleagues often book patients in that age range with me.   I need these patients right now- they remind me (even without them saying so) that I enjoy parts of my job, that it can be fulfilling and that I can find meaning in it.

“Thanks,” I told her more earnestly. “I sometimes need to hear that. I do love my job sometimes.”

She jumped off the table, her arm neatly bound by the pressure dressing, and I knew she’d be back next year to see me.

A few patients later, I sat in front of one of my prenatal patients. She comes weekly for an injections that helps prevent preterm labor in those who have already had a preterm birth, so I’ve see her frequently. Last time I saw her, she had been struggling terribly with heartburn that made her vomit and caused bad headaches after. She had exhausted all the over-the-counter and lifestyle changes to try to combat her discomfort without any relief. Las time I tried a non-traditional medicine- one for nausea that helps with headaches, though not usually used for heartburn. I told her I was unsure it would work, but worth a try because the safety was well established and her symptoms were non traditional.

Now, two weeks later, I asked how she was doing. She told me the new meds still didn’t help. She had waited to talk to me about it, avoiding the topic at her last visit with a different provider.

“I think it’s time we try a prescription heartburn medication,” I said. I explained how the medication is “category C”- a category given to medications to rate their safety in pregnancy. We usually try to stick to category A and B medications and take category C medications on a case by case basis. In her case, I think its worth the risk (not that there is established risk, simply many of the category C medications there is just not enough information).

“See, this is why she’s my favorite,” she turned her head and was speaking to her husband and brother in law who tagged along to the visit. “She explains everything and really tries to help.” She looked back at me and continued, “let’s give it a shot. If this doesn’t work, then really, I’m just going to have to deal. I don’t have that much longer anyways.”

I smiled for several reasons. Her compliment, like my other patients, was well needed, especially coming from a pregnant woman. I also appreciated her attitude- she felt like she didn’t have that far to go, she could put up with discomfort if she had to. She was 24 weeks and had plenty of time to go. I know so many patients who feel like the last 3-4months are an eternity with their discomforts, and here was this woman who understood the transience of pregnancy and recognized that sometimes we just have to put up with discomfort to simply be pregnant. It was a relief for someone to understand that. I put up with many discomforts during Mabel’s pregnancy- and though I might have mentioned some of them to my providers and friends, I always tried to make the point that I wasn’t complaining, just stating- because really I was just so grateful to be pregnant. Every day I had still pregnant was a gift, considering how high my risk for loss was. Even without that risk, I do truly believe everyday being pregnant is a gift. I just wish some of my patients realized that.

What gets you through the days? Where do you get your validation?

Parallels between the babyloss and Down Syndrome Communities

This was her first visit in the office since we converted to electronic medical records. Even though I always review a patients medical history when they come in, I pay extra attention when it’s someone’s first visit since the transition. As I went over her family history I saw listed in the “son- Down Syndrome.” I don’t think I knew this about her. Perhaps I did but it hadn’t meant anything particularly special at the time.

She admitted it had been a long time since she had been in for an exam- over two years and I gave my typical reassurance- “it’s ok, you’re hear now. We’ll get you all caught up.” Before we started the exam, she asked me “what’s new with you?”

“A lot actually…”

“Did I hear you had a baby?”

“Yes. And actually she had Down Syndrome.” I saw her face perk up a bit. “but she died shortly after birth.”

“Oh, I’m so sorry, “ she said. Her words were simple and genuine. I went on to tell her about how we knew our child would have Down Syndrome and we chose to continue the pregnancy. I told her about the low fluid and what it meant for the baby’s kidneys and lungs, how the prognosis was so uncertain.

“We had no idea if she would live or die…”

“Oh my, you have been through so much! What a year that must have been!” I really appreciated her words, because I felt like I had been through so much- the uncertainty, the hope, the letdown and the grief that followed. Sometimes I wonder how I got through it all.

As I went through her exam, we continued to talk. I asked her about her son and learned he was 16 years old and low functioning- non-verbal, but a very sweet boy. She told me stories of their trip to Disney World and his school experience. She told me about her pregnancy with him and the surprise birth diagnosis.

“It’s such a treat to talk about him. Usually when people hear he has Down Syndrome, they think of it as a bad thing and avoid the topic.”

I marveled at the parallel. We continued to talk about the similarities between raising a child with Down Syndrome and being a babyloss mom. The avoidance of the topic, the unhelpful platitudes we receive, the entrance into a very exclusive club you never wanted to be in.   The visit went well beyond the 15 minute slot allotted, but it was worth it. She needed it- and so did I.

At the end of the visit, she asked after another midwife who used to work in the practice. I told her about the new job she had, how well she’s doing and how we still sometimes see each other. She had seen that midwife for years before I inherited her as a patient when my colleague left. “I used to look forward to coming for my annuals, because enjoyed the time I spent with my old midwife so much,” she told me. “But now I get to look forward to seeing you.”

Have you found someone in a different community outside the babyloss world who has similar struggles?

reblog: Risk versus Possibility

Check out this post: http://my-invincible-spring.blogspot.com/2015/02/microblog-mondays-risk-versus.html

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while weshy away from risk.

Oh my.  Here I am, counseling patients every day about whether they want genetic testing for things like Down Syndrome, having had and lost a very wanted child with Down Syndrome, and have never thought of this simple word choice.  Reading this blew my mind and will chance my terminology.

Many thanks to Sadie at Invincible Spring for bringing this to light.  Read the whole post- short, sweet and worth it.

 

Is Mabel a real person?

“Is Mabel a real person?” the woman behind the counter asked. I had called a week before to order a custom cake. I picked out a decadent flavor and frosting combo. The only things I said was that I wanted it to say “Happy Birthday, Mabel” and for it to have carrot decorations on it.

When this woman, who I could tell was the decorator, asked if she was real, I was yet again taken aback about how to answer.

“She was,” I answered quickly with a half smile.

In the car, I relayed this exchange to Chris. A strange question, we decided. I must have said something when ordering that was a little out of the usual. Perhaps they thought I was ordering a cake for a rabbit?

“I wish I had answered differently,” I told him. “I wish I had said, “Yes, Mabel’s my daughter.” But instead I said what I said, leaving them thinking that Mabel was some 85 year-old grandmother who passed away, and isn’t it sweet that we still remember.

There’s a first time for every question. Right now I can answer “how’s the baby?” and “Do you have kids” very easily, with responses that leave me satisfied. In the beginning these questions would cause my heart to race, my face to get hot and tears to well and I’d stumble over an inadequate answer. With time I learned the replies to such inquiries that left me feeling true to my daughter. If I’m ever asked again, that strange, hear-swirling question “Is Mabel a real person?” I’ll be better prepared.

The question did come at an interesting time. It’s been a full year since she was a “real” person. Sometimes I wonder, did it all really happen? Was she really here? Here I am, 21 months out from that positive pregnancy test, eight full months of pregnancy later- the discomforts, the kicks, the ultrasounds that proved there was really a baby and yet, no gurgling baby to show for it all. It feels so unreal. My life in many ways is the same- go to work, come home, care for just myself and Chris. There are many ways I remind myself that things are different- the work changes (still not attending births), the photos that line my house of a child I once held, the stretch marks on my breasts- but I am still thrown a bit when asked “Do you have kids?” Because even though I know I am a mom in a sense, I know I had a daughter, I still feel a bit like an imposter, like I made the whole thing up.

Do you ever feel that way?