Just hours after Remy’s birth they took her from me for testing—to look at her vocal cords, I think. One minute I’m holding her tiny fingers in my hand while she’s being examined on a table, the next a doctor is calling my husband to return to the hospital because I was too inconsolable to speak.
She spent two weeks in the NICU. We were told that first day she had spinal meningitis and to prepare ourselves that she was a “very sick” baby. When the testing for that came back negative, we were told she had a blood infection. She was in isolation, we could only hold her in gowns and gloves. That diagnoses ended up being incorrect, as well. Did you know Maple Syrup Urine disorder is a thing? We didn’t, until they told us she had that too. Another false positive. She also supposedly had spina bifida. But when undergoing testing for that (which was negative), they told us she had a duplicate kidney system on one side. Further testing for that, also turned out to be false.
The craziest part about these nightmare days of our lives is that I’m leaving out a lot. They continued to hold her for testing. We continued to drag our 14 month old with us to the hospital everyday. I would feed and hold our youngest, while Barrett wandered the hospital halls with Jovie. We would come home—without Remy— day after day.
On day 11, I stood in a room full of doctors and nurses and LOST MY EVER LOVING MIND begging them to release her. She was hitting her eating minimums and frankly, they were running out of tests to preform. The Doctor of the day looked my lunatic self in the face and said, “We will discharge you, but I need you to know there is something wrong with this child that we haven’t found yet.”
I am not saying her words were ill intended, but I wonder if she’ll ever know the power in them and how they’ve haunted me over the years. They’ve been the reason that for 4 years we’ve continued to pursue different testing—when in our hearts, we felt she was “fine”. They ran around in my mind all week, as fresh as could be.
You see… last week, Remy had an incident at school where she passed out. Unfortunately, this is the third time in the last 1-2 years that she’s gone unresponsive. Each time, a different circumstance, with seemingly no connection. So we are faced with even more testing now.
Needless to say, it’s been a rough few days in this mama’s world. But God was so faithful to reach in and pull me from pit to peace. And peace is real nice. I’m ready to talk about it now, in the hopes someone might need to hear it too.
Remy’s health has always been an anxiety trigger for me. I was craving God’s peace this week over it all, but I didn’t know how to activate it. I always thought of peace as something you ask for, or hope for, but not necessarily something you can control. But I was, thankfully, so wrong. And one magical sentence in a random unrelated Bible study unlocked, for me, an unhindered perspective.
“Peace comes in situations completely surrendered to the authority of God.”
It sounds so simple. So elementary. But I had to ask, ‘Do I believe God is in control of Remy’s life? Does He have total authority over each test or incident?’ My answers were yes (whether I always *feel* it or not, I know it to be true).
And just like that my peace rushed in like a river.
Grateful for those of you who have and continue to pray for our pretty Remy. And asking that you keep her in mind as we head to neurology for testing next week.