Weekly, I pass by a church marquee with clever sayings, proverbs, or bible verses displayed. Two or three weeks ago, this was posted:
Faith in God is a Refusal to Panic
I thought about that for a moment, tears welled up in my eyes. Recently, I had received news causing me to panic. We received confirmation on May 2, our 5th child (due in August) has Down syndrome.
On April 29, I had gone for a "pieces and parts" (that's what my doctor calls it) ultrasound. No biggee; I'd done this many times before and all was normal...perfect actually. I do have an antibody that causes trouble sometimes so extra care was used when checking the liver size and middle cerebral artery velocity; that was normal procedure, nothing to worry about. The baby was face up and spine down. The sonographer spent one hour and 15 minutes taking measurements before the doctor came in. He really wanted a good view of the spine. I went to the bathroom, had a glass or orange juice, pushed on my belly a few times, all in the hopes that this baby boy (I just learned that news a few minutes earlier) would roll over showing the spine. He didn't. I laid on my side; I laid on my other side, causing the sheet to slide exposing my naked rear. No one attempted to cover it, they were intent on the screen. The doc pushed, tapped, talked, ordered our baby to roll over. Still nothing. I could go. I got dressed, thinking about being late for the appointment with my OB doctor and how I wouldn't have any leftover time in the waiting room to read the novel I brought with.
I checked in at the 1st floor OB/Gyn department. Before I even sat down, Sue called me back. We passed by the scale and went straight to the exam room. No blood pressure check, no reminder as to how many weeks along I am. Just a quick, "Dr. Meier will be with you in a minute." I know Sue; she's been there with me through all my pregnancies. We share vacation stories and poke fun at Dr. Meier; she knows my weight, she's held my toes during past amniocentesis', she's seen me cry. But not today. Today she's just the medical assistant.
I'm still wearing a smile. Good, I think. Dr. Meier must be on call and wants this to be a quick in and out appointment. I like that thought...in and out.
Dr. Meier walks in; he's not wearing scrubs. He's not on call today. He pulls up the roller stool close by and says, "Jen, we have to talk." As I write this my heart pounds just as it did that moment. I say, "OK, about what?" Turns out two defects were spotted during the ultrasound. Now I know why I was there so long. First, our baby has a hypoplastic nasal septum. He also has Endocardial Cushion Defect. Dr. Meier takes me into another room where we can talk at a small table instead of me on the exam table and him on the stool. He points out to me that these birth defects together strongly lead to Down syndrome. He explains using words what these defects are. He draws simple diagrams of a normal heart and our baby's heart. He points out the missing nose bone on the ultrasound picture. He tells me that I will be meeting with the Pediatric Cardiologist in the next week. I ask a few questions. He tells me a few answers. It's all a blur. All I hear is Down syndrome.....heart defect.....most likely surgery......Down syndrome.....chromosomal defects....babies don't survive......we have to make a decision.....confirmation of Down syndrome....lab evaluation.....Mayo Clinic. I hand Dr. Meier the pen. He can see I'm shaking so that I cannot write legibly. He writes some notes. He writes four questions I need to ask the cardiologist. He reads his writing to me. He gives me a great big hug and says, "Go home and talk to your husband. Call me tomorrow and we'll make any arrangements that need be."
The arrangements he's talking about include: abortion, Down syndrome confirmation by amniocentesis or do nothing and progress as usual. DH and I talk about the only options we have. We can find out if our baby boy has Down syndrome for sure or we can wait until birth and find out. We decide that information is important and empowering.
The next day I go back to the clinic for an amniocentesis. Sue is there holding my toes. Dr. Meier jokes about the $3.00 band-aid and how he read that some hospitals are asking parents to bring a three day supply of newborn diapers to the delivery because the hospitals pay $50.00 for the same diapers that a parent could by for $15.00. I wish him well on his trip to San Diego to see his grandson and he affirms me that Sue and Kristin (a genetic counselor) will call me on Friday with the test results. I get dressed and cry all the way home.
I am in full panic mode. Not the pounding heart, constricted pupils, sick to my stomach kind of panic, but a more thoughtful panic. Will this baby ever be on his own? Or will we have to care for him into our aging years? What about the trip to Hawaii we always talk about? Will that ever happen? Will I have to get involved with Social Services? How will the kids react to this news? Will they understand? Will I cry when I tell them? Will they be scared? Will I have enough time and energy to care for our baby boy as well as homeschool the other four and give them what they need? Will I ever feel deserving of fun again? Will I ever smile again? Will I feel guilty forever about wanting more children? Why do I feel like it's my fault?
I read lots of medical information about Down syndrome and Atrioventricular Canal Defect from many different websites. Mayo Clinic, American Academy of Pediatrics and others. It's all very medical and easy to read. Only the facts, no emotion involved. I can read it; I can digest it; I understand it. I walk away from the computer and I hate what I've just read. I hate that I have to read it. I hate that I have to live with it. I hate that I have to tell people my secret.
Time passed. More doctor appointments. I'd already told my mom, father-in-law, grandparents and DH's brother and sisters and a couple friends. It wasn't easy, but DH and I survived through it. I cried every time, he didn't. Then I saw the marquee.
Faith in God is a refusal to panic
I handed Grace a pen and she wrote the phrase down on the backside of a music theory worksheet. I couldn't forget this one. I had to spend time with it, enough time that I memorized it and inscribed it onto my brain. Just like the Lord's Prayer or the 23rd Psalm. I needed that phrase to pop into my forethought at the first sign of panic. I needed something short and real to remind me that God is good. God has a plan for me to prosper and not despair. This is part of the plan. I don't know why, I don't like it everyday, but it's my plan handed to me by God. I will accept it. I will embrace it.
I just finished reading, Road Map to Holland: How I Found My Way Through My Son's First Two Years of Down Syndrome; Jennifer Graf Groneberg writes a compelling story about her journey. Her insight and ability to love her little Avery has helped me come to terms with my own feelings towards and about our baby. For the last 6 weeks I've secretly wished this pregnancy could continue forever. I want to protect him from the cruelty of the world. Inside me no one can hurt him, no one will stare, no one will ask questions. I will be just another pregnant woman. No one will ever know my secret. I have a baby with Down syndrome inside me.
Today I feel different. I can't wait to give birth, to see his face, to feel his breathing, to smell his skin. I can't wait to experience a whole different first year than ever before. I'm still scared, but I'm no longer in a panic. I have God on my side. I have other mothers who've gone before me on my side. I have my husband and compassionate children on my side. I finally took down the original ultrasound picture of the peanut shaped baby today. Before this I couldn't. That picture reminded me of a day when all of this Down syndrome and hypoplastic nasal septum and Atrioventricular Canal Defect was unknown. It was a reminder of the days when I was just going down the same path I had gone four times before. A path I knew very well. A path I could follow with my eyes closed and still get there because I knew exactly where it lead to.
Today I replaced that original picture with a new picture. A side profile of a fully formed head with a fist held closed. My baby, our baby...the one I can't wait to meet.
6 Months Already - looking back on Joseph's first 6 months
Is there a mother in need of encouragement? Please pin. Thank you so much.