Miscarriage: An Autobiography

Sorry for the depressing subject matter

I debated writing a blog post about this. Not only is miscarriage deemed a taboo topic in general, but it’s just an uncomfortable one, too. But I thought about what brings me comfort throughout these losses, and a lot of it is the knowing that I’m not alone–that many women have experienced this pain, and the shared experience can bring more relief than statistics and “self-care.” It is my hope that others may find comfort in reading a similar story. Also since everything carries trigger warnings now, just click that X on the right upper corner if you don’t want to read about miscarriage because if the title didn’t give it away, that’s what’s being discussed here today.

This past week I miscarried…again. It was my third loss, and it just…SUCKS so much. Every time. As usual, I made it to the cusp of the 1st trimester! I was almost there to the “safe zone.” In fact, I have not had a miscarriage sooner than 10 weeks, ever. My first loss was at 12 weeks, second at 10 weeks, this one at 11 weeks. “Missed abortions.” That’s what they call it when you don’t really have symptoms of miscarriage, and no I’m not going into gory symptoms about miscarriage. Google them if you want. The important part was the no heartbeat on the ultrasound when there had been a strong one 3 weeks prior. The important part is that my pregnancy “continued to progress,” meaning my body still thought I was pregnant even though the baby was dead.

Fortunately for me, or maybe unfortunately, I get weird senses about things and knew that this was going to happen. I wanted to remain hopeful, but I just knew Monday afternoon. The physician I work with was really great and helped me get an appointment with my OB first thing Tuesday morning. Like I said, I just had a feeling that history was repeating itself, so I made sure to avoid eating/drinking anything Tuesday morning. I went in, had the ultrasound—no heartbeat. When my really awesome OB offered to do the surgery the same day, I was able to say “Yup” because I had been NPO since midnight and could have anesthesia. So the Tuesday timeline= loss was confirmed around 8:30am, I had surgery at 12pm, and I was home by 1:30pm to begin the recovery process. That was a godsend.

One of my besties immediately sent me cookies. The following day, one of my other besties sent cupcakes. They know me well and they understand miscarriage all too well as they have both experienced its bitter taste for themselves. As a result, they *get* it. Family members sent chicken soup, flowers, and spa packages (yes, really). It was really so sweet of all of them and appreciated.

Miscarriage sucks. It hurts your heart. It hurts your body. You add up the months as “wasted” and mourn a due date that won’t be yours. You want to tell people, but don’t want anyone to know either because there’s a sense of misplaced shame. You go back and think of all the things you ate or didn’t eat enough of, the nights you forgot your prenatal vitamins, the extra cup of coffee you sneaked and wonder if it was your fault. It wasn’t. It wasn’t my fault, and it isn’t your fault either. People will tell you that and you’ll try to believe them. I’m here to tell you that you should believe them. I mean, crackheads with zero prenatal care have like 7 babies a piece. Your propensity for sugary carbs and/or aversion to exercise didn’t cause your baby to die. Your baby just died.

Since I’ve now had three miscarriages, I consider myself an unwilling expert veteran with some knowledge on how to navigate this particular issue.

  1. It’s truly up to you if you decide to share about your situation.
    1. Here are the pros to sharing:
      1. People will generally be nice to you.
      1. They won’t ask you if you’re planning on having children because clearly you were.
      1. You might get cookies.
    1. Here are the cons to sharing:
      1. People act awkward AF
      1. They may (definitely will) make super insensitive and unhelpful “at least” comments including “At least you have other children,” “At least you know you can get pregnant,” “At least it was early” ad nauseum. Feel free to ignore them altogether. They probably aren’t *trying* to be insensitive assholes.  
  2. You get to be sad. You get to grieve. Feel your feelings, but don’t drown in them. In fact, I’m even going to put a time limit on it. Get help if your dark place is too scary or lasts longer than a month. Yes, you totally get to be sad for longer than that. But if your sadness is impacting your ability to do daily activities, including but not limited to, your job, being a mom, being a wife, or even just existing then you need a hand up out of that ditch, sister. There is nothing wrong with that. Get the help.
  3. Don’t go down the bitter road. It actually is a conscious choice, so don’t do it. Don’t get mad at your coworker for having the audacity to be pregnant. Don’t get angry when the family member who wasn’t even trying gets pregnant. Your journey isn’t hers. And you need to be okay with that for your sake and for others. There’s only so much sympathy for a bitter b*tch, so don’t be one. That probably sounded harsh, but I mean it. It is possible to be happy for others whilst being sad for yourself, and if you don’t know how to do that, you should probably learn.
  4. Be gentle with yourself. Know that you don’t have to throw baby showers for friends if it hurts you too much. You don’t have to do all the things. You can let your house sit instead of vacuuming, dusting, cleaning, etc. This is easy for me because I’m a mediocre housewife on a good day. Anyway, you don’t have to be around a bunch of people, volunteer at the church/synagogue, and/or participate in any activity that requires you to make small talk. Good lord, NO. Let the little stuff go for a minute and just be. I give you permission, and clearly I’m an authority here. You don’t have to be super woman right now.
  5. Do the things that fill you up and make you feel better, even if it’s not long-lasting. For me, I like to bake. I’ve made homemade scones, cinnamon rolls, cookies, and cookie bars in the last two days because I freaking wanted to. I also watched the entire Emily in Paris season in one sitting whilst high on pain pills (prescribed from the surgery, yall. I’m not *that*fun) accompanied by a heating pad. Do what you do, yo.

I’m going to close out this rambling blog post by saying that I am Christian, and I 100% believe my babies are with Jesus in heaven. They never suffered a day on this planet. They never had neurosurgery like my 2 earth-side babies. They weren’t picked last at recess or dumped by the love of their lives. They didn’t break their leg before the big game, and they didn’t miss out on the opportunity of a lifetime. They are in heaven in the arms of my Savior. That knowledge brings me immeasurable peace and provides a soothing balm to my still stinging heart. If you’ve experienced miscarriage, I want to encourage you to get to know our Lord if for no other reason (there are plenty) than the hope to meet your baby(ies) one day when this life fades away. I’m so sorry if you’ve experienced losses of your own. It’s unfair AF and miserable doesn’t begin to describe it. You aren’t alone, and there is always room for hope. Maybe you’ll have a healthy baby next time, maybe you won’t. But God will always find a way to tell you He’s sorry for your loss, too. You just have to have your eyes open to see it. Love to all ❤

The bumpy, ugly, and altogether beautiful road to a diagnosis

Clark’s diagnosis: Part I

Hello all! I’ve been super MIA lately, but that’s because I have been living life and staying busy. I think I previously mentioned that we went to the very long-awaited genetics appointment for Clark the first week of March. It was an intense, 3-hour-long appointment. We went through our families’ entire genetic history, health history, social history, our reproductive history, etc. The interview was extremely thorough and filled with high-level conversation. By that, I mean that I am a nurse with a science education, and it was still difficult to comprehend a lot of the information given to us. Now, the geneticist was super kind and explained things as well as he could, but honestly it’s just very complicated, and I really feel sorry for those with no scientific/medical background. The geneticist is obviously super smart and you could tell he was trying to dumb everything down–he tried. So basically the geneticist told us that Clark did not fit any “box” of diagnoses he was familiar with. This was not new to us. I mean, we’ve been to about 8 specialists and 3 therapists who haven’t been able to figure Clark out either. So, he recommended Whole Exome Sequencing (WES). Long story short, it basically looks at Clark’s genetic information and *hopefully* identifies the glitch.

We have known that Clark has some type of syndrome. We have had many different diagnostic tests run to identify the issue. Nothing has come back positive. At first, this gave me great hope that *maybe* nothing was wrong. Once I couldn’t lie to myself anymore, the negative tests became irritating. You see, there a lot of children in this world who have “unknown syndromes.” You know what that means? That means their parents have no answers. No answer, no diagnosis, no possible prognosis, etc. The geneticist warned us that we may not get an answer even with exome sequencing. The test results could identify a genetic abnormality of “unknown clinical significance.” That seemed too horrific. Because we would have done everything possible to come up with no answer.

Y ‘all, I prayed a lot after that appointment, but for the first time I wasn’t pleading for Clark’s healing. Instead, I was begging for peace and understanding. Instead of praying for God to change the circumstances (which, let’s be honest–that’s my usual prayer), I was now praying that God would sustain me, equip me, and give me peace and strength. I prayed that we would find answers, but that even if we didn’t, He would use this situation for His glory. It took about 15 weeks to get the WES results. And I noticed some huge changes during that time:  changes in Clark, and changes in me.

Clark now sits up and plays for long periods of time. He can stand unassisted for up to 5 minutes. He rolls and swings himself around to get to his toys. He can run like a banshee on his gait-trainer. He is eating less purees and more mashes–he’s biting and eating graham crackers! Clark is trying so hard to army-crawl and is even pulling himself forward occasionally.

Changes in me?? Well, let’s scoot back in time to December of 2017, when I felt like every lab test held my world in its cruel hands. I simultaneously anticipated and dreaded the result. Every negative test felt like a shallow victory, because at least Clark didn’t have that disorder, but we were no closer to finding a diagnosis.  I continued living this way for a solid, miserable year. It was undoubtedly the hardest and bitterest year of my life. My heart was irrevocably changed when it was broken to pieces this past December. That was when I was forced to accept that life would not be “normal” for Clark. When I say that my heart was broken, I mean it. I actually had literal, physical pain in my chest, and there was no earthly comfort to be found.

Even still, God found me there. He met me in my suffering and no, it wasn’t like this blazing, yet oddly comforting light where He revealed his master plan and it was all suddenly hunky-dunky. Because it wasn’t that way at all. It was gentle and subtle, and came in little pieces instead of all at once. He gave me peace and hope, true hope for our family’s future. I honestly did not even feel anxious about these genetic test results. I mean, sure, I thought about them, but I did not dwell on them. It’s so odd, and I cannot describe it other than God gave me this incredible gift of joy and peace and acceptance.  I was truly okay and could praise God with an earnest and grateful heart, not knowing the testing’s outcome. Y’ all who have been on this journey with me know that I have been torn up and crazy and railing at God for almost two years over this situation. To say that I am at complete peace proves that Jesus is alive and well and still working miracles. And no, the miracle wasn’t Clark’s earthly healing, but maybe instead He broke my heart to save it, and that for sure is a miracle worth celebrating.

In the next post, I will tell you about Clark’s diagnosis, what that means for us, and why our future is so bright ❤

 

I dropped my basket, and it feels pretty good

A baby Clark update

In early December, I was feeling pretty great about life. I had finished the semester with A’s and survived the hardest months of my life. I had run the St. Jude 10K, celebrated Clark’s first birthday, and relaxed for a few days. At the end of that week, I took both Darcy and Clark to the doctor. Darcy had been diagnosed with an ear infection 2 weeks earlier and needed her follow-up appointment to ensure that the infection cleared.  I had also scheduled Clark’s hearing screen since he got new tubes in his ears. So, it should have gone 1)hearing screen 2) doctors appointment. It’s all in the same building, so whatever. Needless to say, we barely made it on time, and then had to pay our entire balance before we could see anyone, even though we were on a payment plan. Alrighty then, that sucked, moving on to the hearing screen! Clark failed. “After 3 failed screenings and previously failed ABR, it could be that he just has conductive hearing loss. It may be permanent and we need another ABR test to confirm because early intervention is necessary if he is in fact, deaf.”

Y’all. I started crying right then. I was just so upset that after multiple tests and two sets of tubes that Clark might actually be deaf to some degree. It just seemed too much. But we still had a full morning, so I went downstairs to his pediatrician’s office. Darcy’s ear infection had not cleared. 10 more days of antibiotics. I had some concerns about Clark’s chest wall and requested imaging. The doctor agreed that his chest deformity was not looking like the pectus excavatum we originally thought he had. So we went to x-ray and waited an hour for them to say the physician never put in the order. Waited 30 more minutes, and got the x-ray.

Holy shit. It was an effing nightmare. Clark has multiple fused vertebrae, fused ribs, and significant deformities. If you’ll remember…in the NICU after Clark was born we had a similar x-ray result followed by an MRI that was “normal.” I questioned it and the neonatologist at the time. He reiterated that the MRI was conclusive, that it was normal, and no follow-up was needed. If I ever see him again I will “accidentally” trip him, help him up, and stick a “Kick me” sign on his back because he is an idiot. We truly believed Clark had been healed. But he wasn’t. 

I won’t even try to tell you what kind of shape I was in because it was ugly. Ever since we had Clark’s 20-week ultrasound back in August of 2017, I’ve felt like I was holding this giant, heavy basket full of stuff. As time went on, and we got bad labs or missed developmental milestones, I would readjust the load and occasionally drop an item causing me to lament my ineptitude. On this day, though? I dropped the whole damn thing. I was so angry that everything I had prayed for and believed was wrong. What was the point of it all? Why believe, why trust in God when it doesn’t even make a difference? When it doesn’t change the one thing I would die to make better?

And that’s how I learned my hardest lesson I’ve learned so far. My faith was weak. It was dependent on the outcome. And when that outcome wasn’t what I wanted, my faith was crushed and my hope disappeared. Luckily, I had supportive friends and family members that dropped some truth bombs, “Our Lord is so much more than a being that is there to help life go right….when evil causes something terrible in our life, God promises ultimate good for those who love him and keep his commands. But this is not a promise for those without faith.”

And…I’m better. I am enjoying life more than I have in over a year because I’m not waiting for the other shoe to drop–it already did.  I am still apprehensive of the future, but for the first time since August 2017, I’ve stopped actively fighting this thing because it’s a fight that cannot be won. We have a genetics appointment scheduled for Clark at the end of this month, and the bigger, stronger part of me knows that the only way I can help Clark at all is to have all the information. And that requires stepping out into the really bright light, so that no thing is left in the dark. It may mean that we get a diagnosis that’s hard to accept, or  it could just raise new questions. Either way, I know it will be okay because Clark will be who he is meant to be.

On another note, Clark’s ABR testing was normal and he can hear, and I will straight up refuse another hearing screen because they are useless and upsetting. His neurosurgery appointment and ENT appointments have been uneventful and “good.” He’s getting stronger and making some really great progress with therapy. Darcy is sassy and funny and sweet and sour. School is hard, but I graduate in December and it is my motivation to keep on, keeping on. We are truly living our best lives these days. It may be a while between updates because life is busy. As always, we are thankful for your prayers as we continue on the journey towards a diagnosis. Love to all ❤️