Becky passed the one month mark yesterday.
But it feels like she has been with us for years.
Becky had some follow-up tests and appointments this week. I appreciate her cardiologist’s optimistic pessimism. He was pleased with Becky’s weight (8 pounds, 13 ounces) and the clarity of her lungs. But he frankly admitted that he didn’t expect to see her doing so well given the hyperactivity of her heart. He cautioned me that she may struggle to make it to 10 pounds and may need the open heart surgery before the 3 month mark.
There was another bit of caution from the pediatrician. Becky’s thyroid function is elevated and a potential cause for concern. Apparently, it’s unusual this early in life even for a child with Down syndrome. We will repeat Becky’s blood work in a week. Although not dangerous, it could potentially mean more medication and appointments with yet another specialist.
After this news from the pediatrician, the tears came again. Deflated, I told Mom of my discouragement. A scene from the movie Apollo 13 came to mind. In the movie, Astronaut Jack Swigert has just stirred the oxygen tanks causing a massive explosion aboard the space ship. Chaos erupts at Mission Control on the ground in Houston. Trying to get control of the situation, Flight Director Gene Kranz asks
“Let’s look at this thing from a… um, from a standpoint of status. What do we have on the spacecraft that’s good?”
And that’s exactly what I said to Mom.
“So, what do we have on the baby that’s good?”
Mom listened with compassion. She didn’t tell me to have false hope or a steely resolve. She gently reminded me that even the disheartening news is an answer to prayer. Mom’s right. I do want the doctors to find all the problems with Becky. I do want my child to get the help she needs.
After our conversation, Mom spent the day cleaning. And folding laundry. And organizing my house. Because her instinct is always to bring order to a disordered situation. She sees what she can do to help and then throws her heart into it.
It’s been an incredible journey this first month. Some days I struggle to see Becky because it’s hard to look past her medical issues. AV canal defect and common AV valve. Malrotation. Low muscle tone. Inability to feed by mouth. Elevated thyroid function. Down syndrome.
Occasionally, I find myself looking at Becky and just seeing a diagnosis. And not a sweet little baby who sneezes in threes, groans like an arthritic old man, and has a wickedly funny hair style.
Seeing. Vision. Perspective.
It’s something that I have grappled with since my pregnancy. Before Becky was born, I had one nagging fear, among the many concerns regarding her health. It sounds terribly shallow now, but I was afraid of what Becky might look like. After we received the tentative diagnosis of Down Syndrome, I wondered about her appearance.
Why? Because I was afraid of how I might react to her. This was a much loved, much wanted child and I desperately hoped my initial reaction to her would convey that affection. But I worried about those first moments.
At some point I had a heart-to-heart conversation with my brother Dennis. I told him about this fear. I knew that it was petty and small, especially in light of Becky’s potential medical issues. He didn’t judge. He listened. He assured me that I was strong and would be able to handle it. Just speaking my fear into existence helped me to put it in perspective.
Ironically, I didn’t see Becky for hours after she was born. In the operating room, I heard one faint cry before she was whisked to the NICU. Much later in the evening, I was wheeled in my hospital bed from the recovery room to her bedside. I hardly remember this and mostly construct the memory from pictures.
I found out later that I was heavily sedated with medication that can cause hallucinations. While the specifics are hazy, I know I didn’t hallucinate this moment. Because I remember the warmth that filled my heart when I saw Becky for the first time. Amidst the machines and the tubes and the half dozen people in the room, I knew my daughter was beautiful. And beautifully made. And my heart ached to hold her and tell her just that.
I am learning to see our situation for what it is. There will never be a call from a doctor to tell me she is normal, in a typical sense of the word. And there is nothing wrong with that. She may not be normal but she is exactly who God created her to be. She is Becky.
Not a diagnosis.
As I cuddled Becky on her one month birthday, I suddenly remembered a book of poetry that was special to me years ago. I reached over to my bookshelf and grabbed the book “Living Things” by Anne Porter. I love her work. Simple. Profound. Relatable. I’d like to write like her when I grow up.
I turned to page 91 and read the perfect poem for Becky’s 1 month milestone.
For Joshua, One Month Old
Joshua, your hands and fingers
Are so light and small
That when you fall asleep
You rest them on the air.
Gravity has no hold on them
And has to leave them there.
That’s perfect vision.