I have to be honest, I had some trouble preparing for this. Writing is what I do. It is how I work through difficulties. It is how I sort my thoughts and face my fears. The past four years have not been easy for me or my family. I was trying to muddle through why I could not find the right words when I realized that I had been trying tell two intertwined stories as one. My story is about being the parent of a child with special needs. My story is about facing medical decisions and fears. Her story is different. Hers is about living in a world which devalues her. As her advocate, a big part of my job is to assert and reassert her dignity. The pains, the medical decisions, the sacrifices, the toll it all can take on my family- independently, they are hard to value. But the lens we use to understand them is the dignity, the inherent beauty and worth of an incredible kid.
I found out I was pregnant the same way I always find out. I had the flu. When it got so bad that I was dehydrated, I went to the doctor expecting to get an IV. They wanted to do a pregnancy test, but of course, I was dehydrated. So, they stuck an IV in and made me take a pregnancy test.
It wasn’t the flu.
I went home and wrote about Perfect Joy. In one of my favorite books, The Little Flowers of St. Francis, there is a chapter about Perfect Joy. St. Francis is teaching Brother Leo. He talks about the joy of giving, the joy of healing, the joy of knowledge. But he says that perfect joy can only be found in suffering.
The first time I wrote about my daughter Sarah, it was a simple meditation. It was an easy and happy meditation. I felt miserable, but I was joyful. Joy is not isolated from pain. There is peace in the knowledge of Christ's love for us. There is joy in each and every suffering which we lay at his feet.
[It was my second child, and with the first everything had gone smoothly and relatively easily. So, I thought I knew what to expect. I was very excited when it was finally time to do the first ultrasound, at about eighteen weeks. The tech who did the ultrasound was quiet, but I didn’t know her. Maybe it was her personality?
My doctor called me in for a follow-up to the ultrasound. Surprised, but not alarmed, we went in. Something was wrong. He wouldn’t tell me what. He said we needed a specialist to do more in depth imaging, but he wouldn’t tell me why. I did not know what he was looking at.]
So, we made an appointment and saw a specialist. I don’t know what I expected. My mom was with me. The doctor was in the room and a tech was using a sonogram. For about an hour, they murmured at each other and measured inexplicable things on the screen. They looked concerned and ignored me and my questions. It was awful. I was glad I was not alone because it was about to get worse.
When he finally deigned to speak with me, the doctor explained that he thought it was a Chromosomal disorder called trisomy 18. He could do a test, but if he was right, we would want to abort. He said it might not be trisomy 18, but some other awful disorder, in which case we should abort. He could do all kinds of tests and get all kinds of information and he didn’t want to push me into anything, but really it didn’t matter. We should abort the pregnancy.
I don’t think he was trying to hurt me. I don’t think he had any idea how much he had. How could he know I already loved her?
Our world can be really harsh with pregnant women. I mean, most of the time, a pregnant woman can expect people to give up seats and open doors and that’s nice. The world hasn’t met our babies yet, but we are already getting to know them. People are startled when women grieve miscarriage.
I flashed quickly back to my first pregnancy and my first mother’s day. I was visibly pregnant- about seven months along- and after Church I went to get my carnation. The man handing them out smiled and handed me one and he joked, “close enough.” Close enough? It was innocent, but it hurt. I was not “close” to being a mom. I was a mom! Everything had already shifted. My life, my body, my relationships, my world- everything.
Now, again, a man observing my unborn baby saw something other than what I felt. I don’t know what, but he did not see a child.
We did get the tests done, with another doctor. And Sarah does not have trisomy 18, she has Apert syndrome. I told that doctor at the outset that abortion was off the table, and he was respectful.
When Sarah was born we knew she was going to need help. I had done two fetal MRI’s, weekly sonograms, and a smattering of other tests. We had already met with a team of doctors at Children’s hospital, including a plastic surgeon, a neurosurgeon, a geneticist, a radiologist and a genetic counselor. I delivered at a hospital in DC which we chose because it was close to Children’s hospital. There was a respiratory team on hand, which was good because she turned blue and was quickly intubated and resuscitated. As soon as she was stable she was whisked away to the NICU at Children’s.
The first time we almost lost Sarah was only a few days later, while she was in the NICU. The team was worried about Sarah’s heart, her lungs, her kidneys, and her liver. She needed a surgery right away to relieve pressure on her brain, which was already damaged, but they were not confident she was stable enough to go to the OR. They recommended we make our peace and let her go. We called our pastor, who came to the hospital to baptize her, and we decided we would not do any more intervention. We would not take her off the vent and we would not stop feeding her, but we would not send her down to surgery either. We were heartbroken and scared. We prayed harder than I can ever remember praying. We didn’t always have words, and for the first time, the charismatic prayer that sounds like gibberish made sense to me. It isn’t what I did, but it made sense. He is listening, and he knows and I don’t have words, but he still hears.
Sarah did get better. She was able to go in for surgery that week. And I should skip ahead or we’ll be here all night. Sarah’s medical record is not short. There have been dozens of miracles, and that was the first.
Now, Sarah is three years old. It is true that she has nearly died several times. She has been on two emergent helicopter rides. Her medical chart reads, “Chronic respiratory failure.” I have lost count of her surgeries. I know the medics who show up in ambulances. I know the ER and the Pediatric ICU. Once, I showed up the ER and the triage nurse recognized me and waved me through without even asking what was wrong.
As Sarah’s mom, I have learned a lot of things. I know more about hospitals and medicine than I ever cared to know. There are a lot of machines and numbers and measurements and medicines. But at the end of the day, she is just a kid. A sweet three year old, chasing her sisters and snuggling and throwing tantrums.
Society wants to ask about value. They want to talk about productivity. What does she have to offer?
Do you remember the pictures a few years ago of Pope Francis hugging a kid who had cerebral palsy? It was a beautiful picture, it played well on both secular and religious media. Do you remember what the boy’s father said? He said, “He is here to show us how to love.”
We like to talk about love and make movies about love. We make life decisions based on love. But what is love? What does it look like? How does it act? On the cross, we have a perfect example and the Bible tells us to follow that example. What does it mean?
I don’t know the answer. That’s a big question. But I can point.
Being in public with Sarah means facing a potentially unfriendly crowd. You hear stories about bullying- in my circles nearly everyone has an ugly story and advice about how to respond. This is one of our hardest realities. The one and only thing I ever wrote that went viral addressed this. How should people react when they see someone who is visibly different? I was addressing parents about kids, so I presumed innocence. It resonated. First, all my friends who have children with special needs shared it. Then I saw it popping up in other places. My friends would tag me when they saw it. Finally, Yahoo picked it up, and for a day on the Yahoo header there was a picture of my kids linking to a story I had written. My blog went from counting page views in tens to tens of thousands. What I said was pretty simple, but it resonated. Differences are not as troubling as you think. Kids will get over it quickly, if you let them. Ask questions. Say hello. Let children ask uncomfortable questions. If you don’t the questions don’t go away, they just reform as unchecked biases. Here at St. Paul’s, I have to say, the community is awesome. There are not a lot of places I can go without some level of fear, or without working up the energy to decide to respond in a positive way to negative reactions. This is one of them. I expect smiles and hugs and warmth. I expect people to talk to Sarah. I see love, not fear, in the eyes of strangers.
I don’t want to answer questions about quantitative value, but it isn’t because I am worried about my daughter. The asker, inevitably, cannot measure up. What does she have to offer? Hope. Inspiration. She is here to teach us how to love. She is here to teach us about joy.