Anxiety

Trigger Warning: Postpartum anxiety & infant death

After Jade was born, I developed postpartum anxiety, which I did not have a word for until over a year later. Every night I put her to bed, I wondered if I would ever see her alive again. I would check on her before I went to sleep and confirm that she was still breathing, always holding my own breath in case this was the night that my fears would come true. It was torture, which I endured alone because (I thought) people don’t talk about things like this.

Throughout the first year of Jade’s life, I became connected with many wonderful resources for new parents with babies with Down syndrome. One of my most valued resources was a group of women who I was connected to through a DSDN Facebook group. I had never really been in a “support group,” but I immediately felt like these women were wonderfully close friends.

When Jade was 11 months old, I went to a DSDN retreat for moms of kids with Down syndrome under the age of four. That retreat was absolutely wonderful. I connected with so many of the women in the Facebook group who were walking a similar path to mine. We laughed so much that weekend, and cried a lot, too. So many feelings that I had not previously allowed myself to feel bubbled to the surface, unwilling to let me suppress them any longer. As much as I absolutely loved my time with my Down syndrome tribe, I left with so many questions about my own feelings and thoughts. A few weeks later, I told Peter that I thought I should go to therapy because I didn’t think some of my thoughts and feelings were “normal.” He listened and supported me, but I didn’t put any more effort into finding a therapist.

Within my DSDN tribe, we share everything about our journeys with Down syndrome– our ups, downs, good days, bad days, fears, tears, joys, achievements, “not yet”s, worries, prayers, and losses. I loved these women and I still do today. If I could go back and do it all over, I would once again read each of their stories and stay as connected as I possibly could. But, in a community of hundreds of babies with Down syndrome, there are heartbreaking stories and deaths. There were so many stories of trouble breathing, terrifying viruses, and infant heart surgeries. There were babies who died and my heart shattered each time. It is a loss that I cannot comprehend.

When a baby died, our community would rally around that family as much as we could from each of our own tiny blips on the map. We are spread all around the United States and the world, but we tried to show each mama how much we loved her. “You’ve got this and we’ve got you” is DSDN’s saying. We tried, but there is only so much you can do when a family is experiencing the unimaginable.

With each loss, my silent fears multiplied. I was scared to put Jade down for a nap and would apprehensively check on her often. On mornings she slept in, I would wake up and slowly get ready for the day, telling myself that this was likely my last few minutes of happiness because when I went into her room, she would be dead. It was horrible and lonely, but to me, these feelings and fears were SO real.

One night, Lysee woke up around 2 am from a bad dream and came into our room. After I put her back to bed, I instinctively checked on Jade. I put my finger under her nose and didn’t feel anything. My anxiety rose. I put my hand on her back to see if I felt movement. I didn’t. More anxiety. I whispered “Jade… Jade!” Nothing. My body filled with fear and adrenaline. “Please don’t let this be real, God. Please don’t let this be real,” I prayed. I shook her gently and her body moved under my hand like a rag doll. I lost it. I yelled for Peter and he ran in. I think he could hear the urgency and fear in my voice. “What?! What happened?” I couldn’t say the words. All I said was “I don’t know! I don’t know!” And gestured to Jade.

“Jade!” He said loudly, and shook her little body. She sighed and squirmed.

I crumbled.

I fell to my knees and started sobbing. “She’s okay, Heath… she’s okay.” I think I was in shock. My anxiety told me that my fears had come true and I really believed it. “Do you want to hold her?” He asked. I nodded. He picked up a very sleepy and confused Jadey out of her crib and handed her to me, still on the floor, on my knees. I held her and rocked back and forth, thanking God for answered prayers and trying to calm my body from the overwhelming and completely unnecessary panic coursing through it.

The next morning, Peter brought up therapy again. “I think you need to talk to someone.” It was all he needed to say. I found a wonderful therapist, and at my first appointment, she put a name to what I was feeling.

“Postpartum Anxiety”

I had never heard those two words used together before, but the past year finally made so much sense.

Postpartum anxiety is different than postpartum depression, but like postpartum depression, it is not uncommon. I am sharing my story today because I think it is important for all women to know that they are not alone in their feelings, thoughts, or fears. No matter how terrifying or “weird” or “crazy” your thoughts feel, don’t suffer them alone. I can tell you from experience that simply talking about them to someone who will truly listen makes a world of different. More likely than not, you are not alone in whatever you are thinking or feeling.

Postpartum anxiety and postpartum depression are REAL and no one should ever feel ashamed talking about them or seeking help. Ever.

For anyone who needs to see this today, I am here to listen with an open heart and zero judgment. ❤️

Finding My Bearings

I just read an article that affected me possibly more than anything I’ve ever read before. I’m supposed to be stuffing envelopes full of holiday cards for work right now, but I literally cannot stop thinking about this article and I cannot rid my stomach of the pit it created– so I decided to write. I have to get this out of my head before it eats me alive.

The article was about eugenics. It was about how Denmark has nearly “eradicated” Down syndrome from their population. In 2019, 18 babies were born with Down syndrome in Denmark– 11 of those 18 mothers either declined prenatal testing or did the testing and received a false negative. That means that only SEVEN families chose to continue their pregnancy after learning that their unborn baby likely had Down syndrome. It’s hard for me to find the words about how this makes me feel.

It was a long article… it took me about 25 minutes to read it and I cried for probably 20 of the 25 minutes. It made me feel nauseous. I mean literally nauseous… you know that feeling you have right before you throw up? It felt like that… the entire time I was reading it. In fact, I still feel like that a little bit. I have never had a physical reaction like this to something I read. I don’t know why this one affected me so much, but I can’t get over it. 

Why do people choose to abort babies with Down syndrome? The article tried to answer that question, but it left me wanting. One woman who chose to abort her baby said that she felt guilty, but did not regret her decision. She said that she wishes more people who chose to abort would speak up about it so that it did not feel so shameful and taboo. THAT also makes me want to throw up.

Get this– I completely support a woman’s right to choose. I believe that the government should have no say in what a woman chooses to do with her body. I believe that if a woman does not want to continue a pregnancy, she should be allowed to make the choice to end it. I truly believe these things. 

But, I believe that a woman should have all the facts before she makes a decision. FACTS… not fear.

I cannot wrap my mind around how a nation prides itself on nearly eradicating Down syndrome. I just can’t.

The article said that many women (or couples) who chose to abort made that decision based on the worst case scenario. In my interpretation, they basically assumed that their baby was going to have every single one of the scary medical issues associated with Down syndrome and that they would never be able to live a “normal” life again. They aborted their baby because they were scared and assumed he/she would be a burden.

I can’t wrap my head around all of this and to be completely honest, I’m probably not thinking super rationally. Sometimes the reality of how many people on this earth view Down syndrome so negatively hits me like a ton of bricks and it takes me a minute to find my bearings.

The United States has somewhere around a 67% abortion rate of babies thought to have Down syndrome. Let that sink in… around 67% of women who are told that their baby will likely be born with Down syndrome choose to terminate their pregnancy.

How did our society get here? Truth be told, I could do some research to learn the answer to that question… but I don’t want to. I don’t want to read about how society justified killing and institutionalizing people with disabilities for decades upon decades. I don’t want to read about how people with disabilities were abused and ignored and treated as sub-human. I don’t want to remember that society hid them away to pretend that they did not exist. I don’t want to remember that babies like mine were thought of as a burden and not worthy of love– and that some still are. I don’t want to read anymore about that because I know that it will only break my heart. 

Where is the positivity? Where is the hope? Where is the love? Why are medical professionals STILL starting the diagnosis conversation with “I’m sorry” and “let’s talk about your options.”

Think about how differently an expectant mother would feel if her doctor said “CONGRATULATIONS! You just hit the jackpot with this baby and let me tell you why…”

Why are women STILL told all the things that their child with Down syndrome will not do, even though there are adults with Down syndrome who are proving them wrong every single day?!

Why does anyone assume to know what a person will be like based solely on the number of chromosomes they have?

Sometimes I feel defeated. I feel like I am asking impossible questions over and over again. How will society change? How will the diagnosis conversation be different? How will the termination rate go down? How can I impact this movement?

Sometimes I feel like the work is so hard… the walls are too high… their ways are too set.

This is important work. This is work that I will do forever. This is work that I am so passionate about because I know how misguided our current way is. Change is happening, I know that. I see it happening. I feel it happening. It may be happening slowly, but it is happening. (See? I said that it takes me a minute to find my bearings… but I’m finding them.)

Who will Jade be when she is older? I have no idea. Will she be happy? I hope so. Will she be healthy? I hope so. Will she be a contributing member of society? I hope so. Will she read and write? I assume so. Will she follow her dreams? I sure as hell hope so. Will I support her in achieving those dreams as much as I possibly can? Of course I will.

Ask me those questions about Elyse and Zoe. Guess what? My answers are EXACTLY the same. 

So, why the hell would anyone assume that Jade is not worthy of life simply because she has one more chromosome than most of the rest of us? I cannot wrap my mind around it. I just can’t.

It makes me sad and it makes me sick.

And so, I write. And I find my bearings again. And I learn. And I advocate. And I research. And I talk to anyone who will listen. And I do everything I can to show anyone who is willing to be shown that Down syndrome is not scary.

Eradicating Down syndrome is not something to be proud of– it is something to be sad of.

Jade is not a burden, she is a joy. 

Let’s all work together to fill the world with a little more joy. Are you with me?