It’s been five years. Five years this month since the first miscarriage happened. I took it pretty well, but if I would have known how it was just the beginning, I wonder if it would have been different. Because five months later, it happened again, and that one broke me down in a way I hadn’t been broken before.
I was consumed by an anxiety I still don’t know if I can explain. It’s like something in my subconscious told me this was just the beginning of a long road. I had such crazy, irrational thoughts. I was sure I was only meant to have two children, and if I kept trying, a third would just keep dying. But it was always supposed to be three, and I had imagined that third as a little boy his sisters would adore.
But something felt off, and my gut was screaming alarm bells at me. I couldn’t sleep. I was consumed with weird, irrational fear. And then the first dream happened. It was a visitation-type dream with my deceased grandfather. and though there were no words clearly spoken, he too warned me of a troubled road ahead. I was convinced again I needed to let my dreams of the third baby go.
For six months I was torn—back and forth my emotions went.
Did we try again? I was never one to give up on my dreams very easily, but I was terrified of trying again. Then there were the two, little, pink lines. But this would be it. If there was no rainbow at the end of this journey, I would accept it as God’s will and move on because I was sure God was trying to tell me something all these months. I just wasn’t completely sure what.
So the anxiety of another pregnancy after loss settled into the pit of my stomach for the next few months. We made it into the fourth month. Then the dreams came again to remind me the journey was not over. I dreamed I was in my rocker in the nursery holding a baby boy, and though I was troubled, I felt hope in the dream and told him, the baby in my arms that, “It will all be OK.” I woke up knowing something was wrong, yet a sense of calm settled over me. I could face whatever lay ahead. God was sending me these dreams to ease my anxiety and remind me I could face whatever was ahead.
When the doctor came in a few weeks later at our 20-week anatomy scan, I wasn’t surprised when he both confirmed a boy and told me he was concerned about something he saw on the baby’s heart. I knew I shouldn’t consult Dr. Google, but of course, I did. I read up on a zillion different baby heart conditions and after another two weeks of tossing and turning and worrying some more, we finally met with the pediatric cardiologist.
“It’s a heart tumor,” she said. “More than likely it’s related to a genetic disorder called tuberous sclerosis that causes benign tumors to grow on all his major organs. Sometimes they can cause no issues, but in the case of this heart one, we’ll see you several more times before he’s born. In utero is when these tumors on the heart grow, and they can cause hydrops to form around his heart or interfere in the blood flow to his heart. We’ll closely monitor him and you through the remainder of the pregnancy, and at birth, he’ll have other tests done to check his other organs for tumors.”
Knowing this tumor could stop his heart in utero and there pretty much would be nothing we could do led to the longest four months of waiting in my life. I overthought every little quiet lack of movement or kicks, and I spent many sleepless nights sitting on the couch at 2 a.m. eating yogurt because it was at least good for the heartburn.
But we made it to birth day.
Though the road there was turbulent and rough, it was the quickest and easiest delivery of the three. Through the next 60 hours though, I watched as they carted my baby away for test after test, having to sedate him for MRIs, and hook him up to countless wires to check not only his heart but his brain activity as well.
I had already spent so much time waiting through miscarriages and a worrisome pregnancy, but those two days of tests were more waiting and wondering. Finally, all tests, except for the one that still showed the presence of heart tumors, came back clear. The doctors said at this point the tumor would quit growing, and as the heart grew with him, it would minimize the risk of problems as he aged.
As they finally sent us home with our baby, they warned us to be on the lookout for seizures and learning or behavior delays as it was the next way the disorder would present itself. We would continue for years of waiting in this weird land of uncertainty that I was starting to believe I would now spend eternity in. But strangely, even as much as doctors cautioned us of the likelihood of this or that, I felt strangely at peace because though they were the science, I believed more in the truth of those dreams that forewarned me of this path we would walk.
When I was scared out of my mind, sick with worry, wondering how I could go through pregnancy again after two miscarriages, and then lived in a world of uncertainty for months to see if my baby would make it, God walked with me.
Those dreams saved me. They reassured me I could walk this road even with no more definite answers years later than we had before. When doctors were unsure how he would do, faith told me he would do well despite a diagnosis that said he may not.
Two miscarriages, a worrisome high-risk pregnancy, and all the testing and monitoring of those first few years of life only to confirm that my baby may very possibly have a lifelong genetic disease. A disease that could rear its ugly head whenever it decides. It was hell at times, but as mothers, no matter the battles we may face with our babies, we know we’d go to hell and back all over again in a heartbeat.
At three-and-a-half-years-old, he’s doing great. We’re headed into our first full body MRI scan since birth. When I tell people the possibilities of what could be, they look at me like “oh, you poor thing.” When I read about a child who has passed from a sudden cardiac arrest or seizure, my heart stops—thinking of my baby, praying it’s never him and praying for that child’s poor parents.
Looking back at everything, I know God walked with me through all of it.
When people ask how much I worry about it now, I don’t know how to say it—He reassured me all this time, and I don’t worry about my baby boy any more than I worry about some horrible fate impacting any of my children who have had no health concerns hanging over their heads their entire life. Because dark cloud stalking us or not, none of us are guaranteed any more time than the moment we’re in.
Though we’ve lived in a cloud of uncertainty since they found that first heart tumor almost four years ago now, I’m certain God has always been there with us and will continue to be wherever this journey leads.