Birth Story Part 2

Jeff and I went home. I think we were fairly quiet. I think I called my parents. I went inside; I guess to pack a thing or two. I think I got a snack and fed the dog. Then, Jeff drove us to Boise. I remember that they had advised us not to follow the ambulance; I guess afraid we’d freak out if the ambulance had to take a detour or anything.

We parked in N4 and walked to the Family Maternity Center. It was strange again to not have a baby in my arms nor be conspicuously pregnant. Strange to be walking across the parking lot, as casual-looking as if we’d come to eat ice cream with a sibling after a tonsillectomy. We used the phone to get in downstairs, “Keira’s parents.” Took the elevator up and called to get into the NICU ,“Keira’s parents.” Keira, Keira, Keira…still so new on my lips and in my head. Is that what we named her? Was that the right name? We were shown how to scrub our hands and arms before going into the NICU. It seems that someone actually met us right at the door to walk us over to Keira. There was no waiting. We walked by the gurney that Keira had ridden over in. The NICU was one large room, with the capacity of being sectioned off into 20 or 30 separate “rooms” by sliding curtains.

It surprised me that I actually recognized her right away. She looked different than the boys. Her features were more delicate. She looked a bit more like me, in fact. And she was tiny. Lying there in the “crib,” which may as well have been a giant plastic Tupperware or turkey roaster. The nurse, Julie, was doing I don’t know what. I looked closely at Keira without touching. She was sleeping and was so still. She had bands and wires and all sorts of accouterments. This didn’t seem to worry me, oddly, but I was alarmed that one teeny foot looked, well, dead. It was blue. Not even blue… it looked blackish and cold and utterly motionless. I suppose it was from being squeezed several times already for blood samples. The nurse was very kind. Matter of fact. No panic. I remember thinking that there must not be anything too bad happening because everyone was so calm. How could everyone be so calm if there was something wrong with my baby? At the same time I knew that they were trained, of course, to remain calm no matter what. It occurred to me how unnatural that really is.

Someone swept a rocker under me and closed the curtain around us. I might have held her then. Maybe not. It wasn’t long before Dr. Borghese introduced herself and the ultrasound began. Jeff watched the monitor. I stayed seated, away from the monitor, trying, in my head, to limit the information coming to me, trying to pace myself, not sure if I was ready for what was coming. The doctor was quiet while the technician moved the probe around Keira’s tiny head.  “Enlarged ventricles, calcifications, cysts, no active bleeds.” Jeff’s head was nodding. He was seeing what she was talking about before she even pointed it out. It must have been then that we began to learn about what CMV could entail. A wide spectrum of outcomes. A wide array of developmental problems. Familiar words, really. I don’t remember thinking or feeling or saying much at all. Nobody was concerned that I wasn’t holding her. Nobody was concerned that I wasn’t nursing her.

Eventually Jeff and I were shown to a little room with a twin bed- a “singleton” they called it. It was the kind of room where they go to have sex on Grey’s Anatomy.  Funny what comes to mind even during such life-altering circumstances. It was about 3am. Dazed, we curled up together and slept.

Jeff got up very early to go be with the boys. He got them off to school and told them that their sister was sick and so was going to have to stay at the hospital for a while. I was alone at the hospital and went through the prerequisite washing to go see my baby. There was no crib and no baby where I had left her a few hours ago. There were very few babies at all. I poked around until I found her in the back corner. I later learned that this was the coveted “suite.” The corner “room” was somewhat more private, more spacious, and had nice big windows. Nevertheless, it wasn’t very welcoming. No chair for a nursing mother. No comforts. Just lots of plugs, wires, and sterility. The nurse, Julie still, changed my baby’s diaper, found me a rocker, and let me hold her. Maybe I nursed her. But I held her. Held her and studied her and rocked her. I nuzzled my face into her downy blonde hair that was as soft and fluffy as a chick. In my mind, I told her everything would be ok, though I sensed even then that she was perfectly “ok,” I just didn’t know if I was. In my arms that morning, it started to feel real. She started to feel real. I fell in love with my whole heart in that impossible way that you love all of your kids with your whole heart. And that made it ok. Soon I had to put her back in the isolette, as she was having a hard time keeping her temperature up, but it was better. I couldn’t tell you how I actually was before, maybe disoriented or left behind or nowhere. Holding her grounded me again, at least temporarily. I loved this little girl and we had some challenges to tackle.

Julie gave me an orientation to the NICU, Keira’s care and schedule, visitors, etc, in a way that was patient and caring and not too overwhelming. She answered all of my questions and waited for more. And all this with the confidence of a nurse who had tended to a thousand sick babies but the care and concern as if this were her first and only one.

I remember talking to Jeff soon after that. Pleading with him to come back and hold her. “It’s so much better when you hold her,” I told him. I had to stay away for an hour, which I learned I would have to do every 7 o ‘clock as the shifts changed. So, I retreated to the shower, where I cried and cried and cried. I remember looking at my flabby, empty belly in the mirror. What happened?

This day, too, was a blur. We were with Keira, yes, but we were limited in how much we could have her out of the isolette. I met my parents in the waiting room and bravely told them that our baby had an unknown infection that had affected her brain. I told them that she looks beautiful and perfect but that her developmental outcomes were likely going to be poor. They were brave, too, not letting any tears fall, though I know they were there and they looked so sad, particularly for me, I think.

There seemed to be a parade of professionals meeting Keira that day: the neonatologist, nurses, various social workers, lactation consultants, an infections disease specialist, an occupational therapist, a family support person, the pharmacist etc etc.

Jeff returned. He’d had to stop at the store for a box of Kleenex because he’d been crying so much in the car. We went to lunch in the hospital cafeteria. The comfort food I ordered did not do its job. I laid my head down on the table and sobbed. I told him all of my terrible thoughts and my raw, naked, reactions.

I’m so scared. I never wanted to do this. It’s mean of God. It’s a terrible irony. I work with parents of kids like ours but I always thought, “Thank God it’s not me! I couldn’t do what they do. I don’t want to do what they do.” What a hypocrite I’ve been….telling them how to  parent their children. I didn’t want a child who would have to live with me forever or who I had to worry about after I die. I don’t want my kid to drool or to have to wear diapers as a teenager or who can’t walk or whose only job option is McDonald’s. I don’t LIKE any of the mothers I’ve met who parent disabled kids. They are either old-looking and haggard and worn and depressed or they are Type A, overly driven, pushy, and rigid. I don’t like them. I don’t want to be them. Why did we have another baby? Why did we do this? We hmmmed and haaaaed for so long because we thought, “Why mess with a good thing?” Why did we mess with a good thing?  Look what we did. Would it have been easier if she had just died?? I talk about acceptance of disabled individuals, but I don’t love them, not really. I don’t want to hang out with them. They are different and weird. And then here’s my daughter. I don’t want her to be the weird old lady that everyone tolerates; who speaks nonsense and has no real friends. I don’t want this. I don’t want this. I am completely out of control….

Jeff listened. Upset himself, of course, but still always saying the perfect thing. “Let’s go take a nap.” In the midst of this terrible loss I was aware of an extreme and wonderful closeness with Jeff. He was experiencing what I was experiencing and we could do this together.

We went back to our little room. I told Jeff this was my Africa. When I was a kid, I was afraid that if I were a good Christian, God would make me be a missionary in the poorest village in Africa. Otherwise, you weren’t really the best kind of Christian, right? I dreaded being sent on such a mission, but finally chalked those thoughts up to a childhood misunderstanding of what it means to be faithful. Now this. Jeff held me, assuring me that we could handle this and when I couldn’t, then he could. He told me the story of the man who was born blind in the Bible: The disciples asked Jesus, “Who sinned that this man was born blind? The man? His parents? Jesus answered, “Neither hath his man sinned, nor his parents; but that the works of God should be made manifest in him.” Spooned together on that bed I heaved and sobbed until I finally took a little rest.

It was sometime that day that I had a profound revelation. It’s not even about Keira. It’s about me. This is going to change me. It’s going to change my life. It’s going to change my theology. Keira is fine. She is exactly what God made her. Chances are she’ll always be fine with who she is because she won’t know the difference. The problem here is me. Me accepting her. Me knowing how to love her and me dealing with the assumptions, expectations, beliefs, etc etc of other people.

And then I began to transform. As I sat by myself with Keira that afternoon. I texted. I texted and texted and texted and texted. I had never really appreciated texting- or my iPhone- until now. I told anyone and everyone who showed an interest what was going on with my little girl. I told them everything. There was a voice in me that told me that this was a private matter, maybe even shameful, but a bigger part of me wanted everyone to know. It was as if they would show me how to cope or at least let me borrow some strength. This was so unlike me, I felt. I’ve always been a person to deal with sadness privately. I do it myself. I draw the blankets over my head and come out when I feel like I know how to conquer the trail ahead. But not this time. It was like God was showing me that a wholly different experience was going to call for a wholly different solution. I would tell everyone. And in it was a plea.  A desperate one. Help me. And love her. Please, please love her.

I spent the second night of Keira’s life in the singleton by myself. It was one of the loneliest feelings I’ve ever had. Lying alone in that bed, I felt so empty. Not only was Jeff not there, but there was no baby to keep me company. My body had been relieved of its burden, but couldn’t relax without the presence of what it had created. Finally, I put a pillow between my knees, in such a way that I had only ever done when I was pregnant with Keira. And in that way, I think I tricked my body. I slept.

I woke up at 3am and joined Keira in the NICU to give her her first bath. That’s right. She had not been bathed since her birth because of the concern for her temperature. The nurse showed me how to tend to her all the while keeping her as warm as possible. I dare say Keira liked that first bath. I appreciated the nurses’ consideration. They always made sure to ask us whether we wanted to participate in these firsts which, although taking place in the hospital, are milestones just the same.

What I found the next day was a sense of amazement at how far we had come in just 48 hours. Our tears, for the time being, had largely dried up. I felt like this was something I could do. I would make sure that our little girl was an integral part of the community, regardless of her abilities or needs. I would figure out how to be the best mother I could be for her. I would make it public. I would let others in on my struggles and accomplishments. I would reach out to others when I was weak. As Kelle Hampton, author of Bloom, puts it, I would borrow their hearts when mine was broken.  I would not hide from the community in shame or fear that they would reject my little girl. I would pave a new way to be the mom of a disabled child. I would be the model of a whole, healthy, happy woman whose third child just so happened to have some struggles. This would not “ruin” my life as I knew it.

Jeff was downright excited about the future. (Okay, I admit, it was a bit hard to take sometimes.) He felt that he had discovered the best reason why his professional focus had shifted in the past couple of years. He had taken part in the LEND program and become much more invested in the disabled community, a passion that had fully prepared him for this new role. He started dreaming about becoming an advocate, not just for our child, but for disabled individuals in the community, perhaps even becoming politically involved.

Our involvement in NNH transformed from a sick joke into a pure blessing. You name the type of therapy Keira might need and we have a friend and colleague who specializes in it. Or, if we don’t then we have a friend who “knows a guy.” Really, this is an immense source of comfort and security. We are lucky to have these resources at our disposal in a way that others in the same position may not. Plus, our colleagues really “get” it. They understand the implications of Keira’s condition. When they ask how she’s doing and we say, “She’s doing well,” they know that means that today she’s doing as well as she can possibly do, but that does not mean that we aren’t scared as hell about what’s around the corner. In this way, our friends at NNH are some of our best supporters.

During the first day, I was fully expecting to be annoyed by the insensitivity and gall of anything anyone tried to speak to me about the situation we were in. Thankfully what I found instead was that virtually everyone I spoke to seemed to be completely well intended if not helpful and heartfelt. It’s true what they say. When you look at others in crisis and see how their lives change and how they handle it, you gawk and think, “I could never do it.” But you do. You just do. And now, I will never forget that the reason I am able to do it is because of the immense strength I am able to draw from the love of friends and family and even the kindness of strangers.