My Prissy Missy at 9 months old
I cried myself to sleep last night.
Most of my day was hijacked by needing to take my daughter to the doctor, something that pushes me to the brink of my emotions every single time. I don’t handle it well even a little bit. And there’s a reason why.
When my baby girl was born, we didn’t get to hold her right away. The nurses had been cleaning her up, weighing her, all the usual post delivery stuff, when another nurse came over to my husband and me and said she needed to talk to us.
I will never forget the fear that gripped my heart before she said a single word.
She told us our baby had a little skin tag at the base of her spinal cord, which could be no big deal and easily removed or could be indicative of spina bifida. Which has varying degrees of severity ranging from relatively harmless to the inability to use her legs. They needed to be very cautious since spinal cords are a pretty serious thing, so they needed to take her immediately for some sonogram pictures to determine what we were dealing with.
And just like that – a huge black cloud over all the joy and anticipation. I was already nervous about becoming a mommy, completely overwhelmed by the whole delivery process and the craziness I was already feeling in my body as the post-birth adjustment began. I remember feeling something go frozen inside me. All I could hear were those words, “worst case, she would not have the use of her legs” and all I could see were all the lovely ballerina things I had set aside for decorating her room. It felt like a cruel trick.
But I mustered up some smidgen of faith, asked people to pray and waited for them to come back and say it was nothing.
We waited for forever, it seemed, before they brought my baby and I actually got to cradle her close for the first time. Apparently she’d been kicking her legs and squirming the whole time, so they were fairly certain movement wasn’t going to be a problem. For now. But still, it wasn’t nothing. My disappointment was intense, but I did my best to tuck it away, to be strong.
What followed were visits from specialists and the process of finding a pediatric neurosurgeon – a practice so specialized that there are only 5 of them within a 100-mile radius of Dallas/Fort Worth. And lots of calls to the insurance company to get it all sorted. On top of the exhaustion of dealing with a newborn who struggled so much to nurse because she did not get to eat for a long time after she was first born.
When she was one month old, we had to take her in for an MRI. And since you have to be perfectly still during an MRI and she obviously couldn’t do that, they were going to have to put her under anesthesia. I was brought a waver specifying all the risks of anesthesia, plus the extra risks of giving it to a newborn, and all I remember is not being able to see as I signed my name, my eyes blinded with tears prompted by the last line of the waver, which said something about “while not common, death is a possible outcome.” It was too much for my new mommy heart.
But I mustered up another smidgen of faith because lots of people were praying that everything would come back normal, and we could finally move past all this, no surgery required.
And so it was with a crumbling heart that I sat in the surgeon’s office for the follow up visit, clutching my husband’s hand, listening to the surgeon explain how she needed the surgery sooner rather than later, before she grew too much, because she had a tethered spinal cord which could either cause no problems or lots of problems and it wasn’t worth taking a chance. I remember my husband saying, “We were praying everything would be fine, that it would be just a skin tag.” And I remember the surgeon’s almost mocking reply: “I could have told you that wasn’t going to happen. I’ve seen plenty of these and they always require surgery.”
My smidgen of faith disintegrated. Why on earth did God not answer this prayer? Why couldn’t He have proved the smug all-knowing surgeon wrong? Why did we have to subject our tiny baby to surgery?
But we did. When she was 3 months old. They had to do the whole thing under magnifiers because she was so tiny. What was supposed to be a two hour surgery turned into a four hour surgery, partly because she was so small, partly because they also discovered a cyst on her spinal cord that they needed to remove.
When we met with the surgeon afterwards, he said the surgery had been successful, they’d managed to get “most of” the cyst, there was only a 20% chance of her spinal cord re-tethering, all we could do now was wait for her to grow.
Wait, what? It’s not over? Just a “wait and see”? They told us potty training would be an important time, that if she struggled to get the hang of it, it would be a possible indicator that all was not right.
I can’t even begin to tell you how stressful potty training was. It’s hard enough as it is – but were the problems normal or due to complications that would mean more surgeries? We managed to navigate that season, but it was not without many, many tears and lots of fear on my part.
Which brings me back to Monday in the doctor’s office and me crumbling. They couldn’t quite put a finger on what was going on with her and due to a recent infection she had and her medical history, they decided they’d better order a round of x-rays/tests on her kidneys and other organs. It’s probably nothing, they say, but just to be on the safe side.
And they don’t know what those words do to me. I realize many people have gone through much worse medical issues with their children, at times have even lost their precious treasures in the process. My heart aches for them with a measure of empathy. And just because there are worse situations does not make our struggle any less valid or real – something I am only just accepting and why I am only just able to fully admit my wrestling.
All I want is certainty, to know this issue is no longer an issue, no longer even a faint question mark on the horizon. I want to be able to take care of my children when they’re sick without having to lock myself in the bathroom and weep because I am so afraid.
I’ve been through all the prayer classes and read the books and learned the Scriptures and I know how I am supposed to pray over my children. Full of faith and confidence because ultimately they are God’s, not mine, and He loves them and has a plan for their lives. I try. I do. I declare the things I’m supposed to declare, I reach down deep to find that mustard seed of faith . . . and so many of my prayers for my children end up with me sobbing, pleading with God to please just take care of them, let them be all right. They are not confident prayers; they are desperate prayers.
Because He didn’t heal her before. Because the money for the insane medical expenses was not miraculously provided. Because the surgeon could not say “We got it, she’ll be fine.”
Here is my raw, vulnerable truth: I massively struggle with faith for miracles, especially healing miracles. I work for a prayer ministry, for crying out loud. I hear the voices of a lifetime in church, explaining unanswered prayers as the result of a lack of faith, and I wonder what that means for my prayers over my children.
But then I wonder if maybe, just maybe, God understands my quivering mother-heart. Maybe He sees it as faith that I am still praying at all, in spite of countless disappointments. Maybe He sees it as faith that I keep trying to trust Him with my most precious treasures again and again, even though it is so hard. Maybe He sees it as faith that I am coming to Him every time with all my tears and uncertainty, still reaching and looking for Him in the fog.
Maybe that is faith after all. So I enter in again and again – into my own heart and into what I believe to be true about God’s heart, that He is far more gracious than we have taught Him to be, that He measures faith far differently than we think. And I wait.
*Linking up today with Marvia Davidson for Real Talk Tuesday.