when you are afraid: on genetic testing and muscle memory
It’s been over 10 weeks since Theodore came into this world. Ten crazy, lovely and hard weeks.
At eight weeks, I wrote this:
In the days following his birth I was an emotional wreck, like most mothers. The postpartum hormonal cocktail did a number on me. Coupled with a dash of grief and the realization that I had another baby to love made me a little woozy. A little terrified.
You see, when your first child is diagnosed with a deadly disease, all you know is grief and fear when it comes to mothering. When someone says, Don’t worry, I have to acknowledge that all I know is worry. And that’s okay. My motherhood journey so far has been full of it. I had two blissful, worry free months when Florence was a newborn, and then it all crashed. My muscle memory is caught up in the ugly and the hard, so it keeps going to that place.
A twitch in his legs as he falls asleep. Is that a seizure? Can he see me? Isn’t he supposed to look at me by now? Is he blind?
You might laugh, but I had to sit on the couch and try my hardest not to Google. It was a deep, dark temptation. And I often caved. I realized it wasn’t even about SMA anymore. It was about plain, ol’ fear.
I don’t spend every day worrying, but I do taste it and feel it a heck of a lot more than a mother of a healthy child.
I feel the stab of anxiety right in my heart. Palpations. Thick and heavy with dread. I have been comparing him to every newborn I meet. I have had wonderful weeks, and I glow when people remark on his strength. But then he twitches his leg in his sleep, I feel so close to vomiting up my heart, I have to put my head between my legs and breathe. Florence had leg shudders, trembles when she would cry, at about 4 weeks of age. Her sweet little leg muscles were dying. So, when Theodore is breastfeeding and his little leg gives a quick twitch or two, I feel it all. Panic. Grief. Fear. I don’t know what’s normal! I don’t know what to think!
This is motherhood to me right now. It is not pretty, and yes, it’s probably sad to you. But it’s my right now, my present.
I took him to the hospital and got his blood taken for the genetic testing when he was about three weeks old. I wrapped him up against my chest and braved the pathology lab at the children’s hospital. I had flashbacks to when Florence was tested at 3 months. I cried into his milky neck folds until he was wet and he was purple and livid from the blood draw. But I did it. It was done. Two weeks later I got a phone call from the doctor. The blood had not been sent for testing yet. There were a few things I needed to know. Did you know full blown SMA can show up in blood work, but the child doesn’t show symptoms of the disease? Nope, I didn’t know. Did you know this can mess up life insurance? What? No. I didn’t know! Also, is he symptomatic? Because we don’t really run these tests unless there is a reason…
This threw me way off track. I didn’t understand why this was all coming up, when mothers get prenatal testing all the time, in fact, it feels like the preferable route sometimes for care providers. Aren’t these issues also applicable to prenatal testing? Why isn’t there a time limit now? Just because I don’t have the “option” anymore to abort, doesn’t mean I don’t need to know in a timely matter!
I felt very angry, confused, and frankly, not ready to run the test again. Every time the phone rang and I saw it was from the hospital (for Florence), I would break out into a cold sweat. I was and still am very afraid of receiving the test results. I just want there to be a giant NO in red, flashing lights one day. I want it to catch me off guard. I want to know and be done with it, and close this chapter in Theodore’s life.
I called the doctor back a month or so later and told him to run it.
But it was not easy.
In fact, I got off the phone with the secretary and cried my eyes out. I told God, I am so afraid right now. I’m terrified. I’m scared. You have got to help me with this.
And He has. I read this post by Sarah Bessey shortly after.
The days are a bit long when you’re waiting without assurance. I think I used to confuse faith with my longing for control, particularly of outcomes. Even now, it’s a lame sort of faith, mine, the kind that waits for a sign before taking the risk.
Oh boy, did I wait for signs during my pregnancy with Theodore. I wanted to know. Without a doubt. But I had doubts in my pregnancy. I doubted my decision to not run the prenatal diagnostic testing. And so, fear and I were good friends for many weeks.
Even after his birth, when I knew I could have the results, I couldn’t muster enough courage to run the test “again”. It was a curveball that I could barely pick up again. I grabbed my phone multiple times and punched in the number for the doctor’s office. And then I hung up. There was no way I could get the words out. Run the test. Run the test. Run the damn test.
This became my mantra for weeks, and it took weeks to finally follow through. After reading Sarah’s post, and talking to another mama whose first child had a medical issue, I finally found the courage to say: I’m afraid, and that’s okay.
I’d like to run the test.
My hands shook, it hurt, and yet I felt a deep release. It was like giving birth all over again.
It took 9 months and 8 weeks to come to the decision to run the genetic test.
Now, at 10 weeks, I am feeling a lot different. I’ve scrubbed off lots of fear and trembling and instead ingested peace. I’ve been swallowing it whole. I’m so thankful for those that pray, because without that support I might still be teetering on the edge.
I took Theodore to the pediatrician yesterday. He informed me that the testing is run in batches, and it won’t be run for another few weeks yet. So, we’re probably going to receive the results in January.
However. He examined my son yesterday. He took that rubber mallet and bonked his knees. And I saw his reflexes, which Florence never had. I saw them all, in every limb. I saw his legs kicking so hard that the doctor couldn’t properly measure his height. I saw him lifting his head while on his tummy, bearing weight on his legs. I saw things I’ve never seen Florence do. No trace of hypotonia. No trace of SMA. I saw all the things I’ve been seeing all along.
He looks great. He looks completely normal. I think he’s going to be just fine.
Sometimes things don’t turn out the way we want. You’d think I’d know this by now. I wanted easy. I thought I deserved it. And even though everything looks good with Theodore, I’m still chilling that bottle of champagne in the wine fridge, for that celebratory day when we receive the all clear. But, there was and is still some chaff that needs singeing, eyes that need opening.
I saw my trauma and fear as a part of me. And though I acknowledge their place in my life right now, I don’t want them leading and guiding me.
Jay brought home champagne glasses the other day. I washed them free from dust and fingerprints and slid them into their place in the cupboard. I can’t wait to fill them, brim full, bubbling over.