We are planners, my husband and I. Not crazy down to the minute planners but we like to have some idea of what we’re doing next. That being said, we’ve both had enough curve balls and u-turns in our lives to embrace flexibility and a tiny bit of the great unknowable. However, when we were ready to start a family, we obviously forgot all of our life lessons. “The Plan” was we’d get the job done in one or two tries and then we’d be on our way to parenthood. Yea. What’s that saying? Man plans, God laughs?? It took several more months than we had “planned” and when it finally happened we were relieved and overjoyed. That should’ve been our first clue that maybe, just maybe, parenthood wasn’t going to follow “The Plan.”
It was an uneventful pregnancy. Happy, healthy, glowing, I was so ready to meet my son. Complications in delivery resulted in an emergency c-section. Scary, but in the end everyone was safe and healthy and we were parents. Again, another clue not fully absorbed. I was still following my “plan.”
Those early weeks were happy, sad, scary, crazy and exhausting. Everything we “should” have expected somehow still caught us off guard. We knew that sleep deprivation was part of the deal but we didn’t know HOW sleep deprivation was going to feel. During those first few weeks, I had a niggling feeling something was off, different, not quite right. I chalked it up to postpartum hormones, sleep deprivation, my natural tendency to over-think and over-analyze. I was still following “The Plan.”
At six weeks, as expected, I noticed that I was starting to feel sort of…well…normal again. Our son was (thankfully) a good sleeper and we had found our routine. Then, not too long after experiencing that “normal” feeling, the bottom of our world dropped out from underneath us.
It started with a weird patch of skin on his knee. It blistered. Then his whole body blistered. Miraculously, his diagnosis was not the scary lifelong auto-immune variety we feared but a rare, and supposedly not life-threatening, skin condition called mastocytosis. Something, we were told, he would eventually outgrow.
Medication and a six-week old infant is complicated at best, and we were quite a bit off center of “best”. His version of masto was of the more complicated variety as it involved his entire body. He endured ups and downs of medications as well as 45-minute, twice-a-day bandage changes akin to a burn victim. All of it administered by loving, but stress-out parents. We had the blessing of good health insurance and medical professionals that did everything in their power to support us; miraculously figuring out how to keep our precious boy comfortable and safe. But we were the ones on the sharp end of it. Somehow, somewhere, in the back of my head, I was still following “The Plan.”
A little shy of his 3-month birthday the unthinkable, and to this day unexplainable, happened. We rushed to the ER. The effects of being blistered over 90% of his body were taking their toll. His poor system was taxed beyond the capability of his short 2-1/2 months on the planet. He was admitted. The PICU doctors and nurses educated themselves on masto. The chief of the PICU had his team studying treatment options. Again, we were blessed with a highly competent, compassionate driven team of medical professionals hell-bent on making sure our boy was going to be OK. However, the stress on his poor heart was too much. He was intubated to give his system time to recover and get stronger. We were told the only thing left to do was pray.
I looked down at my baby boy laying in that hospital bed, tubes coming out of his tiny body. In that moment I knew. Just as sure as a million watt bulb had switched on in my brain, I knew. I had to let go. I had to let go of every single hope and dream I had for my brand new family. I had to let go of every single hope and dream I had for my little boy. I had to let go of every single hope and dream I had for motherhood. I had to open up my wounded, bleeding, terrified heart and just let it all go. We were in uncharted, unimaginable territory and I had to face it with an open heart and open mind. As I sat there stroking my baby’s hand, tears streaming down my face, I opened up the rawest parts of me and I let go…. and prayed like I had never prayed before. I prayed for healing. I prayed for wisdom. I prayed that God would let me keep him. In the silence, disturbed only by the beeping of the monitors, I prayed.
The doctors still have no clue why things happened the way they did. Why this supposedly benign condition did what it did to our baby boy. At this point, why didn’t matter. I finally had to throw “The Plan” out the window. This was life. I can’t pretend to tell you that I still don’t plan or that I am some go-with-the-flow expert. I can tell you that I’ve learned to be a little more relaxed when things both big and small don’t go as planned. I give myself and those around me a little more grace and channel my inner Scarlett O’Hara….afterall, tomorrow IS another day.