My Grief After Losing Grace: Where I Am Now

Grief is just such a jerk. 

Since we lost Grace, I have read books, participated in both online and in person support groups, taken time off work, done acupuncture, meditated, traveled, and have become an advocate to help improve the experiences for others like us (since no one plans for this in their pregnancy, it really is adding insult to injury to be subjected to callous legal requirements). I have exercised more, taken more walks, listened to more music, written letters to Grace, helped other friends unfortunately and heartbreakingly go through the same experience, bonded with many people that have had the same experiences and drawn comfort from them (and hopefully provided some comfort back). I have been in more therapy including a psychiatrist and two therapists than any other time in my life, and I am not new to therapy.

Eleven month have passed by. And nonetheless, it is harder than ever right now. 

I wish I knew what was going on, but I'm no expert, and even experts tell me grief is unpredictable and nebulous; that it never really totally leaves, it hits when you least expect it, it's sometimes gentle and other times takes your breath away, and it appears that all you can do is hold your breath and try to accept it and hold on until it's better. That sounds brutal for anyone, and its uniquely hard for someone that has worked under the illusion that with enough hard work and effort, you can overcome anything. Grief is reminding me that I don't control a thing.

I started lightening up on the advocacy work both out of need because it's so hard, and because of other circumstances in my life (if you can believe it, this year has had a jaw dropping number of stressful and sad events not even related to Grace). Likely, tucking that away a bit has given me the space to let the grief come in. But it feels so much more like grief has arrived blasting the door straight off its hinges. I suspect the seasons changing and the influx of holiday decorations is a decent part of it; our fall just finally arrived, and not only do I already contend with SAD, but I have so many memories of being nervously excited about being pregnant, FINALLY pregnant, last fall. Meeting trick or treators and wondering what we'd dress Grace up as this year, when she was 6 months old. We said goodbye to her the day before Thanksgiving, and Thanksgiving, despite being surrounded by people that love us and that we love back, and was brutal exercise in exhaustion, sadness, shock and numbness. Grace's termination anniversary is on Thanksgiving this year. Later, after we lost her, I remember walking through stores and seeing Christmas decorations all over and desperately searching for my enjoyment of the holidays in the hopes that this experience wouldn't ruin my future enjoyment of them. Any time I saw a pregnant woman or baby, I wanted to go up and say my baby had died. It doesn't even make sense to me. It felt insulting and unfair that life went on, and that Grace wasn't with me anymore. 

Right now, my grief and sadness it is coming on so strongly and so acutely that I'm doing something I have never really done before and trying not to fight it anymore. I just can't do it. I wish I could and until I went through this myself I didn't really get how something like this changed someone so much, and trying to envision it made me shudder and change my thinking to a more comfortable topic. But I don't get to do that. This actually happened to me. And having gone through this year with all of its frustrations, disappointments, sadness, and losses (including friendships and weakened relationships), to then arrive at 11 months out thinking that relief should be replacing the grief only to have the grief be more profound than ever... the only thing I can think of to say is it's just too much. And we are facing some potentially very, very hard news regarding our own possibilities towards having children any day now. Even if we do try again, I can't even fathom a world where I enjoy pregnancy after all of this. I just know too much about what can go wrong. 

I'm not quite sure why I'm sharing this here. In the past I've asked you to consider our story, share it, learn more about your state's and our country's laws, call your representatives and vote to help protect our rights when it comes to situations like Grace, but this time I have no call to action. I've been utterly overwhelmed by your love and support thus far. To my friends and family that have accepted and embraced me through this: and it truly makes a difference. I wanted to share where I am right now, why I am so grateful for your support and for any advocacy you have done on our behalf and all other families like ours, and to say it still matters. Where I am now is evidence of it. There is no replacing Grace; having another child, if we're ever that lucky, will not "fix" this and I'm learning now that it doesn't just go away. I don't feel better thanks to the passage of time or all of the effort I've put in to do so. Different, and able to smile more, but not better. So if you've read this, thank you for doing so. I feel like it's important for me to acknowledge it to honor Grace and how important she was to us, and to honor other grieving people out there.

Please Call Your Representative About House Bill 36 Today! (Script Included!)

On Tuesday, October 3, Congress will be voting on House Bill 36 which is a 20 week abortion ban.

If this had been in effect when we learned about Grace's disease last November, we would not have been able to terminate the pregnancy, thus meaning I would have had to continue carrying her until she was either crushed to death by the pressure of my body without amniotic fluid to cushion her, or I would have delivered her to immediate pain and suffering and death. No child with the bilateral type of her disease (which she had) has survived, according to the many doctors we have discussed this with. There is no medical intervention for this. My own risk would have gone up 7 times.

If you'd like to help fight against this (and I'd be grateful if you would!), here is a script you can use for calling your representatives. Currently, the vote is scheduled for Tuesday, October 3rd.

• Step 1: Find your representative here.
• Step 2: Call them up! This might sound daunting but I can promise you that dialing is the hardest part. A staff member (not the representative) will answer. You need to say you are a constituent from [say your zip code] and would like to discuss House Bill 36, and request that your representative vote no on it.
• Step 3: Tell them why! When I call (I've already called about this a few times), I tell them a brief version of my own story. I tell them I know over 500 other women that have had to make the same heartbreaking choice I have and that this will never end for families - many diseases that are fatal for the unborn are not discovered into far further into the pregnancy than 20 weeks. I tell them the bill is based on erroneous information that pain is felt at 20 weeks, when 7 doctors have told me it's more like 24-28 weeks. Here are a few other points:
  • This is another instance of politicians inserting themselves in the most private and personal medical decisions best left between a woman, her doctor, and her family.
  • More than 99% of abortions occur before 21 weeks. Those that occur after 20 weeks are often cases of very much wanted pregnancies that have gone horribly wrong (like mine).
  • This is not about protecting pregnant women or babies. If it were, how would they answer my situation (and the 1% of women that terminate after 21 weeks where their health suffers and their child will die a very painful death if they cannot terminate? This flies in the face of the stated intent of the bill). This is a political move, not one designed with health in mind, otherwise, it would not have medical falsehoods as the premise.
  • Here is a link with lots of other information on why these bills are so harmful: Link
• Step 4: Thank the staff member for their time and for listening.

That's it! If you'd prefer not to call and to instead fax a message in, Resistbot is an AMAZING tool for this where you can fax from your phone or Facebook messenger! So easy!

I, and all of the women that still have this devastating situation still to come in their lives (your daughters, cousins, sisters, nieces, wives...) all thank you. Even the ones that think they wouldn't: trust me, you wouldn't want to not have the choice to do what you think is best when you face this. You deserve the right to make the choice, even if you'd make a different one that we did.

Learn More About Clean MO Thursday, 9/28 at 6 pm at the Royale!

Hi again, friends!

Since we started sharing Grace's story, we have been overwhelmed by people asking how they can help. Obviously sharing our story helps, but we have something more concrete, which I personally love: I am thrilled when I get a specific action that can help a cause that is important to me. And at this moment in my life, nothing is more important to me than being able to make the right medical decisions for myself and my very, very loved family. 

Tomorrow (Thursday, September 28th) I will be at The Royale with NARAL ProChoice Missouri discussing my family's story, our journey and frustrations becoming advocates, and what everyone that hears it and asks 'how can I help?' can do, which is help with the bipartisan ballot initiative: Clean MO. 

What’s Clean MO? Some of the initiatives include:

• Require that legislative records be open to the public
• Require politicians to wait two years before becoming lobbyists
• Eliminate almost all lobbyist gifts in the General Assembly
• Lower campaign contribution limits for state legislative candidates
• Ensure that neither political party is given an unfair advantage when new maps are drawn after the next census

If this is something that you feel would be good for Missouri (again, it's bipartisan! It's designed to make our democracy work more fairly!) please come out to The Royale tomorrow (Thursday, 6:00PM). I will be talking about why I think this is important  and how all of you can help in getting Clean MO on the ballot next year. No matter what the cause that's closest to your heart is, this ballot initiative helps make sure laws are more fair and our politicians truly represent us. 

You can learn more about Clean MO here and more about the event (and RSVP!) here:

NARAL Missouri for Clean: Special Guest Robin Utz

Join NARAL Pro-Choice Missouri on Thursday, September 28th at the Royale for a happy hour to meet the people leading the CLEAN Missouri ballot initiative...

Let Me Tell You About My Friend Dana

One of the things that has made losing Grace a little more bearable has been the support from friends and family. I feel like that sentence is so generic it almost doesn't mean anything, but in the moments when you get a card/flowers/text/visit, it makes so a profound difference that no sentence could really capture it. 

I have friends and family that run the gamut across belief systems, including very conservative, Catholic family to deeply liberal, atheist friends and every single person has chosen to show us love and support to whatever extent they find possible. It's been an amazing gift in our lives as we navigate this. It's a unique sort of grief that comes with being presented with such a heartbreaking reality and decision for a very wanted child, and then additionally having that decision be so condemned by much of society. I have been called a murderer more than once. Thankfully, never by anyone whose opinion I value. 

I quickly become overwhelmed by gratitude for our friends and family when I pause for even a second to consider their generosity of love and spirit, but today I want to put a little spotlight on my friend Dana, who I have known for around 12 years. She has been a great friend to me, from saving my cat's life to being one of two people (along with our friend Beth) that introduced me to Jim. 

Dana was halfway around the world on her honeymoon with her husband Ben when we learned about Grace's fatal fetal diagnosis, and took the time to send us a note expressing her condolences and support when she learned. Little did any of us know she would come home shortly thereafter and learn she was pregnant herself. It put us in a predictably awkward situation with me having just ended a pregnancy I had chased for nearly 4 years, and Dana in the impossible situation of trying to figure out how to tell her grieving friend she was pregnant. She was kind, considerate, and has made sure I feel remembered during her entire pregnancy. It has made a world of difference to me.

When I testified during Governor Greitens's 20k/day special session, I had to cancel dinner plans with Dana and a few friends to make the logistics work. Despite being around 30 weeks pregnant, working full time and facing the last minute nature of testifying (I found out at noon that I was leaving around 7 am the next morning), Dana dropped everything to join me. She drove with me 2.5 each way and sat in the Senate room all day with no breaks for the opportunity to support me and share her own perspective: that watching what the state of Missouri had done to Jim and me after we made what we believe so strongly to be a loving, humane decision to end our pregnancy had cost Dana comfort, security and joy in her own pregnancy. She realized it could happen to anyone, saw how deeply it affected us, and felt compelled to say something to protect other families. Her testimony was powerful, vulnerable and impossible to ignore. 

I have always been and will continue to be grateful for Dana's friendship: at a time when it undeniably might have been more comfortable for her to distance herself from my circumstances in order to feel more secure in her own (especially as a first time mother), she pulled me closer. Dana put her own comfort and safety on the line and stepped out of her comfort zone to speak up for me, Grace, herself and every other woman in Missouri. I am in awe of her strength and her ability to not only own her power, but to also realize and capitalize on the absolutely true fact that anyone can advocate and make a difference: we all have a story, and Dana sharing hers truly made a difference. I can't wait for her baby to be born (any day now!) and to see what kind of mom she is, but no matter how she approaches it, that is one lucky baby to have such an amazing mom.

What I've been up to (NYC, DC, What's Next!)

Hi friends! 

It's been a little while. My lack of posting here doesn't mean I haven't been active in other arenas though... I've just needed a little break from writing. It's so weird going through this.  A year ago I was a month pregnant and nervous and excited and hopeful that it was FINALLY our time. This year... I've had that pregnancy make it to 22 weeks, terminated for medical reasons, then gone on this wild ride of advocacy. I hardly know who I am anymore. I don't know what to do or how to do it or when to take a break or even how to take it. But I hope you'll keep coming along with me while I figure it out. Hopefully I'll do it with some grace and humor.

For the past few months, I have:

• Been filmed for a documentary with Jim that will be coming out down the line.
• Saw Lady Parts Justice League's hilarious and powerful Vagical Mystery Tour comedy and outreach show. I almost felt like I was cheating having a good time and laughing there after having tearfully recounted our story just the day before, but well, that's being a fully developed human being right? 
• I went to New York City and met up with some truly tremendous women that deeply, completely supported us after losing Grace, even when many hadn't met me in person before. Their ability to love, support and show compassion from all around the country has been a great learning experience for me.

• While I was there I also met up with another highly recommended Reproductive Endocrinologist just to get more eyes on our situation and case and was told we're just really unlucky. I almost had to laugh at that. Sigh.
• I went to D.C. to see my beloved oldest friend and her family, and spent a day advocating with Erika Christensen and Dr. Julie Bindeman. We met with Representative Barbara Lee, Representative Louise Slaughter, Representative Diana DeGuette's offices, as well as Senator Joseph Manchin's. We were in the Hart Senate Building while the first health care vote of that week was going on, and the protests that disabled individuals from around the country were conducting were stunningly powerful. It felt like such a privilege to be in the room while it was happening. 

I have some shifts in how I want to approach advocacy coming up, but I'm also trying to take a breath for a bit while I figure out the best approach. I feel so overwhelmed by the hurdles we are facing in just getting people to hear and understand this perspective on abortion, and I am having to learn a lot about self care along the way. Others that are fighting, how do you do it? 

Guest Blog: Sam's Story. "Just Adopt"? It Isn't That Easy.

A lot of people wonder why Jim and I don't "just adopt", especially after 4 years of trying to have a baby through infertility treatments and 2 losses.

We have explored adoption in our quest to have a child. Adoption is a beautiful, and it is ALSO not nearly as easy as a lot people think it is. There is no "just adopt".

My friend Samantha (Sam) Blanco shared her story with me recently and it brought me heartache and chills. Please read, consider, learn and share. 

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It’s been five years since my husband and I first started trying to have a child. We had a plan from the beginning: we’d have three children, the first two would be biological children, and then we’d adopt a third. But if we didn’t get pregnant within a year, we would go ahead and start the adoption process. What’s laughable now is not that we had this clear plan and thought it would work, but that we thought any plan we made would be easy.

After two years of trying to conceive, we finally started the adoption process.  (At this point, we hadn’t even looked into fertility treatments; it wasn’t until later that we would learn we would not be able to conceive without significant, expensive medical intervention). We carefully selected an adoption agency, went to a two-day training for adoptive parents, and became part of a network of other people trying to adopt. We were optimistic and excited. We waited for two more years. In that time period, our lives were busy while my husband worked on a huge project for work and I pursued my PhD. I imagined that I would graduate and our lives would slow down, then magically a birth mother would call us at the perfect time.  Then on January 31 of this year, we got a mass e-mail from our agency that stated they were declaring Chapter 7 bankruptcy and were closing effective immediately. With that e-mail, thousands of dollars, two years of our time, and our hope disappeared into thin air. People often ask us if we’ll ever get our money back (which is highly unlikely), but the loss of time and trust has been far more devastating.

My husband and I made some immediate decisions. I took a semester off of school. We spent more time together, focusing on helping each other get through each day. We were fortunate to have a family member who works in adoption who told us, “You need to mourn this.” So we mourned. Slowly life has returned to normal, except now we’re back to square one.

Suddenly, we’re in a place we never expected to be. We’re both 35. We’re both uncertain what path we want to pursue to parenthood. We’re uncertain if the decisions we made a few years ago are still the right decisions. And we’re processing the emotions and experiences of the past five years while still trying to move forward.

In recent weeks, I’ve found myself reflecting a lot on our experience. I have a greater understanding of the impact of infertility than I ever could have had as the woman making decisions about parenthood several years ago. Here are a few of the things I’ve learned:

Your family and friends may not be ready for your decision. Once we decided to adopt, we spent a lot of time explaining the process to our families and friends. Some of our loved ones were very excited. One of my favorite memories is telling my husband’s cousin, and seeing her immediate joy. Others asked many questions, which we were happy to answer. And while I understood it came from a place of love, some of our loved ones frequently questioned our decision. Don’t you want to at least try IVF? What if you change your mind and want to try it but you’re too old? Are you sure you’ve made this a priority, what if you took some time off work and reduced your stress? Often, these comments were expressions of their own fears, not responses to our excitement about starting a family. These questions also made me feel as if choosing to adopt was somehow equivalent to giving up.

You and your spouse will likely have very different experiences with infertility. There was a point in time where I felt anger and envy towards my husband because our friends and family focused so much of their attention on me when it came to infertility, as if it were something only I was experiencing. Often, we would walk into a party and infertility would be the first thing I was asked about, and I’d look over to see my husband cracking up with friends about the latest episode of whatever show they were watching.  My husband, on the other hand, was feeling his own levels of insecurity about infertility that often he would keep from me.  

When you can’t get pregnant, every option available to you is expensive and invasive. This seems to be the one thing that very few people understand about infertility. Fertility treatments are expensive. Adoption is expensive. Fertility treatments are physically invasive. Adoption and foster care are personally invasive, with requirements to provide great amounts of financial and health information, along with several home visits. Any path a person chooses toward parenthood is complex and carefully thought out. There is not “Why don’t you just do IVF or adopt?” There is no “just.” It’s a long and difficult path.

Feelings of loss related to infertility aren’t what I expected. Not being able to have a biological child was difficult emotionally, but it was not a tragedy in my life. I had always envisioned myself adopting a child, so it was not a big shift for me. I was completely blindsided by the adoption agency declaring bankruptcy. After years of feeling confident in my decisions about becoming a parent, I was suddenly plunged into a depression.  There is no script for explaining to people the loss I was feeling as a result of the agency going bankrupt: a loss of money, time, and most importantly, my trust in systems built for adoption. When you have a baby biologically, you don’t have to second-guess the way you have a child. But with the agency bankruptcy, my husband and I were second-guessing every single decision we had made in our quest to be parents.  

We haven’t decided what we’ll do next. We know so much more than we did when we started this process, but that knowledge hasn’t necessarily better prepared us for making a decision. We’ve been very open about this with our friends and families from the beginning, and value that openness. But one of the negative aspects of that openness is that we are getting a ton of unasked for advice, advice that comes from a place of love and concern, but assumes that they have an answer for us. And perhaps that’s the biggest lesson I’ve learned, that there simply is no right answer. My husband and I will be parents one day, but there’s no one right way for us to get there.

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Sam Blanco lives in Brooklyn with her husband and two dogs.