After that initial ultrasound, we had four weeks until our baby’s fetal MRI. Those four weeks of waiting were more painful than listening to Sponge Bob’s obnoxious laugh on repeat (if you can imagine that). In the mean time, our doctor encouraged us to do a little bit of research in our family history to see if whatever our baby had could possibly be genetic.
In our digging, we came upon two things that really seemed the most relevant. One was that there was a family member who had PKU. If it’s left untreated, it can have some pretty damaging neurological and physical effects. The good news was, while PKU is far from easy, it is “treatable” with a very specific diet.
The other piece of information was the one that sent me into mental tail spin.
I knew that Matt’s family lost their youngest son and brother, David, shortly after he was born, but some how I neglected to remember the details, which now seemed critical. When David was born, his skull had not fully formed, making the day they said hello to him also the day they had to say goodbye. One of the things our baby’s MRI was going to check was that the gray matter surrounding the outer lining of the brain was fully formed.
And this was when the tailspin started. My mind took this information and proceeded to conjure up some very dark, scary scenarios. No matter how hard I tried to fight them, I could only suppress them for so long before they came tip-toeing back in. They kept me up at night, and when precious sleep would finally come, they jolted me awake with panic and fear.
I felt with the deepest conviction in my heart that this was it. This was what was happening. Our baby wasn’t going to make it. It’s too closely linked to not be the answer. We should start considering organ donation. We should start thinking about a funeral.
I finally let myself do something I had been avoiding like the plague. I let my husband see me cry.
I was trying to stay positive, trying to be strong…and I just couldn’t any more. My mother’s heart was breaking- I was shattered. We sat at the edge of our couch and I buried my face into his chest..and I cried…really cried…my entire body shook…and I sobbed “What if we lose this baby?” In that moment, my prayer shifted from my yearning of “Please God, not ACC.” to begging, pleading…”Please God, let it only be ACC.”
Telling people who were closest to us was the hardest because I knew that whatever the outcome was, it would affect them, too. And for whatever reason, this brought another layer of heaviness and guilt for me. I felt like I was bringing a burden into their lives that would forever affect family gatherings, play-dates, social events, etc.
I will never forget the day I had to break the news to my co-workers, because really, they are my second family. I saw them, talked and laughed with them, and stole candy from their desks on a daily basis. In fact, during basketball season (my husband coaches) I saw them more frequently than I saw my own husband! I tend to wear my heart on my sleeve, so after 5 years working with these people they knew me pretty well. They knew my love for coffee, my love for laughter, and my love for saying the *occasional* 😉 four letter word in the teacher’s lounge. Carrying around this secret about what was happening was something I both needed to tell, but also dreaded saying.
The morning I knew I had to tell them what was going on, I was a mess. My stomach was in a thousand knots. My throat had a huge lump that made it hard to swallow. I was fighting back tears starting at 7:00AM.
When the time finally rolled around for our meeting, everyone filed into my classroom and took a seat. I took a deep breath. I started to unravel what was going on, and I lost it. The flood gates had opened and there wasn’t any stopping them. After my secret was exposed, the gravity of the situation began to really set in. I’m sure we could have gone through an entire box of kleenex together that morning. And let me tell ‘ya, I had never been more thankful for makeup that with a few quick swipes could cover up blotchy, puffy, tear-stricken eyes.
That morning also holds one very special memory. After everyone had left, their minds and hearts a little heavier than when they came, one of my friends lingered just a little bit longer. She wrapped me in her arms, a hug so strong and tight, I was able to literally collapse all of my weight as she held me up. And again, I let myself cry that deep, sorrowful, whole body shaking cry. I’m not exaggerating when I tell you I soaked the shoulders of shirt in my tears. Good thing she had long hair so she could cover it up!
From that day on, these very special people were my rock. While the waves of fear and doubt were hitting me like a fierce ocean storm, they stood strong, unwavering in their love and support for me. Day in and day out, they looked out for me, prayed for me, made sure I still smiled. I also remember eating a lot of ice cream…
What I despised the most during this early part of the journey was a having to tell so many people what was going on. I felt like a broken record replaying the same awful song, with the same awful lyrics, hour after hour, day after day. Each time I had to retell our situation, the cut seemed to dig a little deeper.
Whenever someone told me “It’s going to be okay,” I knew they meant well, but in my mind I thought “How do you know?” I didn’t mean it in a smug kind of way, but more like “How can you be so sure? We can’t see into the future. Things don’t always turn out okay.” I wasn’t mad at them for saying this; I just couldn’t get myself to believe it…yet…
There were no right words. There was no magic cure. What I…what we… needed was love, support, and a hell of a lot of prayers. And that’s what we got. And it was enough.