Birth Trauma Survivor and Maternal Health Advocate

Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere. –Lisa Bonchek Adams

You know I’m not a “typical” blogger. Recently, I checked my website statistics and couldn’t believe how many of you are hanging in there with me.

Thank you. I appreciate it. I will try to do better.

Can you see my fingers crossed behind my back?

I wish I could pump out blog posts every day or at least a few times a week, but it just doesn’t happen. I’m jealous of writers who are able to do this, especially the ones with kids. How do they do it? I aim to write at night or at naptime, but instead I usually end up savoring the silence at the end of a busy day. When my kids fall asleep, I sit on the couch with the lights off. Everything is quiet. I think of nothing and it feels good. Sometimes I make a gigantic ice cream sundae with whipped cream, hot fudge and sprinkles. I like to do this when Miss J is sleeping because I know that I won’t have to share it. Sometimes I drink a glass of wine. Sometimes I watch reality tv marathons.

Sometimes I fall asleep.

Speaking of sleep, I’m still not getting enough. But it’s not because of PTSD and lingering thoughts of my postpartum hemorrhage and my miscarriage. I’m healed, remember? It’s been almost five years.

We welcomed a new baby into our family last March. I will refer to her as “Elle” on my blog. I’m not getting enough sleep because I’m the mother of a one year old and a five year old. Four years is a big age difference. I’d forgotten what it was like to have to spend weeks waking up every couple hours for feedings. Plans for my day can easily be shot to hell by someone vomiting or shitting all over themselves and/or my clothes. Meetings scheduled months in advance risk being canceled due to fevers, weird coughs or my babysitter cancelling at the last minute.

I spent this past year trying to perform a juggling act. Mother. Wife. Maternal health advocate. The children always come first. It’s been a great year with Miss J and Elle. Miss J has grown into her role as a big sister. She is protective, empathetic and authoritative towards Elle. Miss J also gets jealous every now and then. When Elle was a newborn, Miss J reverted to doing things like asking me if she could drink my “booby milk”, sit in the infant car seat and push Elle’s walker. She eventually realized that she was above all of that nonsense and preferred the “big girl” things she can do that Elle can’t. Although Miss J has a full schedule filled with activities and her friends, it was hard for her to see us give someone else so much attention. She had us all to herself for four years. I’ve never known the feeling of competing with a sibling for attention. I’m an only child. Bobby can’t relate either. He’s the youngest of four, but the only boy (or the Prince, as he is sometimes referred to by his family).

In addition to managing our day to day lives, I spend several hours each week researching maternal health bills and doing my part to increase awareness about birth and pregnancy complications. I reach out to elected officials, maternal health organizations and other women like myself.  Of course, if Miss J decides she wants to play ‘Candyland’ or ‘Go Fish’, none of the above gets done.

Miss J always wins.

As I learned to juggle being a mother, wife and maternal health advocate, I found a good role model in Lisa Bonchek Adams. I came across her blog shortly after my miscarriage in 2011. In the world of healthcare advocates, Lisa was a powerful voice. Shortly after giving birth to her third child, doctors discovered an abnormality with one of her breasts, This led to the discovery that she had metastatic breast cancer which is incurable. Not only did Lisa spend countless hours writing about cancer and the details of her treatments, she also wrote candidly about her family. In particular, she wrote many posts about her son, Tristan. Tristan was born with congenital abnormalities in his spine and hands, as well as a rare condition requiring heart surgery when he was seven months old.

Reading Lisa’s blog helped me develop a more open relationship with my readers. I didn’t just want to write about having a postpartum hemorrhage and my miscarriage. There was so much more to what I had been through than that. There were questions to be answered. What was the cause? What happened when I went home? What is PTSD? Would I have more children? Where are the resources for birth trauma survivors? And so on and so on.

Lisa died on March 6, 2015. The tone of her posts had changed over the last several months and I had a feeling that she was going to die soon. I cried as I read her obituary late at night in my bed. It felt strange at first to cry over the death of someone I never met in real life. But that was the magic of Lisa’s words. Her writing was powerful. Thousands of people felt connected to her whether they were affected by cancer or not. I still look at her Twitter page everyday. It’s a habit I can’t break. Even though I know she is gone, I check everyday hoping for a new post. Lisa’s social media presence had a huge impact on me. It was an up close and personal look at her real life. Treatments. Her marriage. Her children. Her friendships. Lisa’s blog was more than an account of a person with a terminal illness. It was about her choice to do the most with the time she had left to live. She sought to connect to others and educate them about metastatic breast cancer. She planned her children’s birthday parties, packed them for sleep away camp and made Shutterfly Albums. I was often embarrassed (at myself) after reading how active she was. She sometimes accomplished more in one day than I do in a week. And she did all of this mostly from her bed! Sometimes her posts were very graphic and made some people uncomfortable. Of course after writing about hemorrhages for the last three years I was not in that category. Lisa wanted people to know that being diagnosed with a terminal illness did not mean you had to stop living. She wanted people to seek more information about their health. She demanded the best from her physicians and encouraged others to be active participants in their healthcare. Lisa’s tweets also included messages encouraging women to book doctor’s appointments that they may have been putting off. As I write this, there is a little devil on my shoulder telling me to admit to you all that it’s been over a year since I have seen Dr. B. I have my reasons and you will find out why in the near future. I sent him a text two weeks ago to let him know that I would make an appointment soon.

I still haven’t.

The quote at the top of this post was written by Lisa. It was usually her first tweet of the day, every day.

Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere. 

As always, I’m so thankful for your support. I’m excited to share with you what I’ve been up to, especially the experience of my second pregnancy and the birth of Elle. I don’t know if Congress will ever pass The Maternal Health Accountability Act. What I do know is that there are thousands of maternal health advocates like myself working hard to spread awareness, educate and provide resources. My main goal is and always has been to connect to other people affected by a birth or pregnancy complications and let them know that they are not alone.

 And just like Lisa, I will persevere.

 

 

 

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