I’m trying to decide whether it would have been better to be oblivious about Regina’s diagnoses until her birth, or have it the way it played out and fret about everything for 19-ish weeks. I guess this way is better. It might be more overwhelming to have all this dropped on our heads like a ton of bricks on the day of her delivery. I don’t know.
I have responded to the overwhelming feelings of anxiety for her by researching everything I can and joining every group that I find. Which, on the surface, sounds constructive, right? Instead of sitting around worrying, I can get up and do something! But, it hasn’t really proved helpful in practice. Turns out, Down syndrome has such a ridiculously wide spectrum of outcomes, it is impossible to predict where she will fall. Some are born perfectly healthy and can go home immediately, some have mild health issues and need a little time in the NICU, some have several serious health issues and spend months in the NICU. Some are born late, some are premature, some are born right near the due date. There is a higher risk of stillbirth and miscarriage. Some breastfeed straight out of the womb with no problems, some need help figuring out how to breastfeed, some take months to figure out how to breastfeed, some can never breastfeed, some need feeding tubes. I guess you get the idea of why I’m tearing my hair out. How can I possibly prepare with pretty much everything being up in the air?!!
And as for the groups, it has been really good to not feel so isolated in this heart diagnosis and DS diagnosis. However, seeing all of the pictures of the group members’ precious babies in the NICU for months on end and then their sweet babies post open heart surgery with several tubes sticking out of their frail, tiny bodies is making me incredibly anxious. How can you possibly prepare for such a thing? And yet I know mothers go through this all the time, prepared or not.
I had an appointment with my new perinatologist this past week (thank you, Alice, for the fantastic recommendation). He rolled the ultrasound wand over my belly, checking off the (uncomfortably long) list of things that could go wrong with a baby with Down Syndrome. “Her brain looks good, not too much fluid,” he says. “Kidneys look good, bladder is full of urine like it should be, her spine looks strong and closed. Her lips look great, no cleft palate.” Regina has the hiccups while he is examining her, and I blissfully watch her rub her feet together and play with her hands in front of her face. “Everything looks great except for, you know, her heart,” he tells me. He focuses on her heart. With two other children with mild heart defects (Ruth and Wren), I have seen a ton of ultrasounds of little hearts. Never have I seen anything that looks like this. Instead of a neatly four-chambered heart, the ultrasound shows a black space surrounded by a silver circle with a thick silver line going down the center. As it beats, it looks like a black butterfly outlined in silver beating its little wings. “Typical AVSD,” the perinatologist says. So many holes where walls should be, and one thick valve in the center where two should be. He says it looks balanced, which means one side of the heart isn’t working too hard, which would cause the other side to atrophy. That should comfort me, I suppose. I ask him what should I do? Is there anything I can do?! “She is dancing around and kicking vigorously,” he informs me. “That means she is perfectly happy. I advise that you enjoy the rest of your pregnancy.” It’s sound advice, but it will take a miracle.
With so much of Regina’s future being unknown, it is easy for me to be caught up in anxiety, bitterness, and resentment. I can’t help but think of Mary, the Mother of God. God’s plan for her life must have seemed so mysterious and nonsensical. However, she didn’t despair, and she didn’t give up. Instead, she pondered all of these things that were happening to her in her heart.
The child’s father and mother marveled at what was said about him. Then Simeon blessed them and said to Mary, his mother: “This child is destined to cause the falling and rising of many in Israel, and to be a sign that will be spoken against, so that the thoughts of many hearts will be revealed. And a sword will pierce your own soul too.”
-Luke 2:33-35 (Emphasis mine.)
Mary knew that her child would cause her sorrow, as prophesied by Simeon. She knew this for 33 years! I cannot seem to face a few more months. But she did not despair. She trusted in God’s holy Providence, no matter how mysterious it seemed to her. I have chosen to try my hardest to follow her example.
Our last perinatologist neglected to give us any ultrasound pictures. When Scott and I realized the grievous omission, we rushed back to the office to ask for them. They gave us some bogus excuse and still refused to give them to us. I left confused and empty-handed.
I am happy to say that our new perinatologist gave us pictures to keep of our little girl. I held them to my chest and wept. He politely ignored my outlandish reaction to such a seemingly simple thing. But when you have a child that is special needs, it is the little things that you cherish and are grateful for the most.