love will lead us // part 2: on our second pregnancy and making peace with uncertainty
I have tortured myself with “what ifs” for too long. I have allowed myself to be influenced by what others might think. I have seen the facts on SMA, seen the steps involved to prevent SMA again (genetic testing, abortion, preimplantation genetic diagnosis, adoption [this is a wonderful option!], stop having children). In that world, having children naturally isn’t an “option” anymore although the odds are in our favour.
It is scary to step out and say “we broke your rules,” and then wait for the backlash, the punishment of judgement. It’s scary to tell people we aren’t doing genetic testing. And yet, it’s tiresome when people find out we are pregnant and the first thing they ask is will we do testing? I’ve spoken to others mothers who are pregnant or have been and carry SMA. They are terrified, and scared, of words of judgement, of not being accepted. It breaks my heart. I wonder if the system of the world thinks we are irresponsible, because it wants to corral us? I have seen this system fail, time and time again. It has failed our daughter, it has failed countless others, in thousands of ways. It’s not what we rely on.
As people of faith, perhaps this doesn’t make sense to you—this choosing, this free will, this trusting. All I can say, is it makes sense to us, and it’s the only choice that brings peace to our hearts.
Sometimes we come across those that don’t understand, or their truth is written across their face: I don’t have hope for you. I am afraid for you. Do you know what you’re getting yourself into? This, of course, is all masked under a smile. Sometimes the difficult circumstances in their lives dictate their hope or expectations. I’ve been there too.
But mostly, we come across those that treat us like we are expecting a baby. A real baby. They celebrate our pregnancy, they celebrate new life, but most importantly, they have great expectations. They have been jubilant. From nurses at Canuck Place, to therapists involved in Flo’s care, and most often, our incredible family and friends. I do not take this lightly. When people that don’t carry the same beliefs as us, rejoice with us? It has made me crumple into a mess of tears countless times. Thank you. Thank you.
Just recently, we met with three neurologists, including the one who had diagnosed Florence. She saw my blooming belly and congratulated me. She asked if we knew if baby was a boy or girl. I stammered, “Uh, well, no. We aren’t finding stuff, these things…well, I already had the ultrasound, and, we didn’t find out—“
“So, you aren’t doing any testing?” she smiled placidly.
“No. No, we aren’t.” I had waited for this moment for ages, played a scenario in my head. They would shake their heads, tsk tsk. They wouldn’t understand. They would yell at me. They would feel sorry. They would project fear onto me.
“I can feel this baby moving a whole lot. I’m happy to just wait. This is my child, no matter what, no matter what happens.”
The male neurologist threw his thumbs in the air, a beaming smile on his face. “Good for you!” he exclaimed.
My hands quivered as I answered their questions about this current pregnancy. Does it feel different? Does the baby move more? I’m not sure, I answered, but it does feel different. I knew they might not all agree with our choice, but they didn’t let it show.
After they left, I had a little cry, an outburst of fragile pregnancy emotion poured out in the hallway.
My baby. Baby child, quickening in my womb, you are our greatest leap of faith.
Do we trust our God? Is that enough? Is it easy to fully rely on Him? Does it feel crazy? Do people secretly judge us behind our backs? For us, our faith is being put to the ultimate test. We are not in control, we are making decisions in faith, and we are waiting, while a life grows in my womb.
We are moving forward with conviction that God is good. Even in the dark nights of faith, my husband and I keep pressing in. God is the giver of good gifts. He is the God of redemption. He desires to see life abound, to see His children thrive. And yet…we have a fragile two year old under our wings, and everything points up and down and sideways. It seems that God isn’t in the picture somedays, when Florence has trouble breathing, or her bones fracture once again.
It’s really easy to lean into the now and assume this will happen again, because, why not? It happened in the first place. It’s easy to question: where was God when Florence emerged from my womb, born beautifully into warm waters carrying a deadly genetic code into this world? It’s easy to imagine another water birth, another diagnosis. I still remember the dirt under my nails, the garden potatoes, the phone call. I still remember the pain and grief of the diagnosis. And I admit, part of the reason we aren’t doing genetic testing is because it terrifies me more than waiting. Needle in my belly, waiting for test results. I shudder at the thought of it. I know many families that have chosen that route knowing they will keep their baby no matter what, and I cheer them on. Some need to know as soon as possible, perhaps still dealing with the grief and loss of another child.
It’s not always easy to choose hope. To choose to wait, trust, and enjoy this pregnancy. It’s not easy when I’m nauseous and throwing up and we’re in the ER all day, and I’m thinking: what are we doing?! We. Can’t. Do. This.
My one word for this year is brave. I am no hero, and I am not brave by my own merits. Every time I feel the urge to freak out and fear that this child will have SMA, I stop. I stop, reign in my thoughts and imagine this little one tottering around the house, standing beside Flo and learning to stroke her face gently. I picture a little sister, one that loves and nurtures Florence, understands the fragile human condition, understands faith in action. I picture a little boy, exclaiming that his big sister is the “bestest in the whole wide world.” (Ok, maybe I picture a little girl more often 🙂 )
I picture my child smiling at children in wheelchairs, children with feed bags, oxygen tanks, completely unfazed by their equipment. They are like Flo, mama! And I love them so.
After I push the fear back, I calm and I centre my racing mind, and I thank Him. I thank the One that has given us courage to move forward. I thank the One that I used to scream at in pain and terror and misunderstanding. I thank the One I cursed on the kitchen floor that gray day.
I thank the One that gave us Florence.
And I trust, even when I don’t, that everything will be alright.
Soon. One day. In that brilliant place of eternal peace. Soon, when our little heart will lay nestled in swaddling cloths at the end of summer.
New life, new hope.