on Moriah's birthday

Tomorrow, July 13th, is Moriah's one-year birthday. Happy, happy birthday to our little girl!

And now, dear readers, many posts ago I promised that I would write down Moriah's birth story, a story I have not been able to tell in its entirety without crying, even now, twelve months later. But tonight, sitting here in the corner of our living room/homework room at my laptop, with the windows open, a daughter coo-ing in her bed, and a husband and two boys watching a movie in the basement, I'm going to tell it to you.

It is very hard for me to know HOW to tell the story. So often this year I have said aloud that Moriah's birth-day was the worst day of my life. I do not want to say that anymore, maybe because there have been so many awful, awful days since, I hate to say, but also because her birth-day brought HER, which was in itself a great gift (Jason likes to say we got the gift, but in a packaging we really did not expect). So tonight I'm going to try to say how the gift came, to describe the packaging and the shock it brought...but I'm telling it to you now, friends, for this reason: because tomorrow, when Moriah's birthday comes, I don't want to spend the day reliving horror or fear, or lamenting all she still can't do. I want to spend tomorrow giving thanks. And the writing of this story, dear reader, will mark the beginning of my thanks.

July 13, 2009. A Monday morning. My mother arrived early in the morning to our house in Lynn, and took a snapshot of Jason and me, standing in our dining room. To this day, I can remember exactly what I was wearing, and how proud I felt to have carried a baby to full term and a day, how proud I was to be a healthy and active pregnant woman, and mostly, how proud I was to have spent my pregnancy in a lot of laughter. These were unexpected surprises for me, who did not EVER want to be pregnant, and who had not really wanted a baby, ever. Also, I remember feeling really nervous about my planned C-section, and a pit in my stomach I can only describe as dread. I figured it was about the C itself; we had prepared for a natural child birth with a privately-hired doula in a birthing center with a midwife...and to have a baby who "wouldn't turn" despite all my attempts (acupuncture, standing on my head in the pool, yoga moves, you name it) was nearly devastating. I was already a little angry about it, angry that we had postponed any plans we might have made to HAVE a baby on account of the boys, their adjustment, Orilus' bone marrow transplant, and I was (apparently) getting repaid for my goodwill with...a yucky surgical birth. But that morning, I remember being determined not to dwell on it. I had resolved it would happen this way, made a choice over the weekend to acecpt it, and I wanted it done, and wanted to welcome my daughter into the world.

Jason and I got into our minivan, and as we pulled out of the driveway and began the 30-minute drive to Beverly Hospital, I laughingly (but somewhat seriously) said to him, "I just have one thing to say. No surprises today. If the baby they pull out is a boy, just don't tell me. I cannot deal with anymore surprises this week." After the surprise of a breech baby, the ordeal of a version, the acupuncture...it was all a bit much, and I just figured I had paid my dues in the ugly surprise department. Jason laughed, and we chitchatted the rest of the drive, trying to think more about the baby than the surgery-birth we didn't want.

We were early. We are always early. The nurses were happy, and took us in. Within minutes, it seemed, I was in a hospital gown and Jason was standing next to me in blue scrubs (see endearing photos on Facebook). The doctor checked with an ultrasound...the baby was still breech...and I was wheeled into the OR without Jason to get prepped for surgery.

But I wasn't alone. Because we had originally decided to use the North Shore Birthing Center for our birth, the midwife delivering babies that day was assigned to me still, there in Beverly Hosptial. She accompanied me into the OR and was with Jason and me throughout the C-section, and throughout the rest of the day. Her name is Amanda, and she was a great gift. She talked with me as the doctors prepped me (as you know, you have a sheet hanging in front of your face and you can't see anything, so she told me what was going on) and we got to talking so much, that we both didn't realize it when the doctor had started cutting. Jason came in a few seconds later (he told me afterwards he could see me open already, which he was a bit shocked to see, I think) and Amanda very kindly took photos on the other side of the blue curtain for us while Jason sat by my head and kept asking me if I was okay. And once I was in there, I really was. I was listening to my iPod in one ear, and Jason in the other, and was very, very calm.

Suddenly, it seemed, Amanda said, "There'll be a lot of pressure now, Melissa" (which, compared to the earlier-in-the-week version when the gyn had tried to turn the baby from OUTSIDE my body, was really nothing) and "Here she is!" and an OR guy was holding up a dangling baby for me to see, down near my feet, and darting across the room with her to the observation table. That was my first glimpse of our daughter--upside down--I was sure he was going to drop her--and I burst into tears, so, so happy she was there, so happy we were surviving the whole ordeal.

Amanda was snapping photos and I sent Jason to go and stand with the doctor and nurse and take a look at our baby. Amanda came over to me and began showing me photos...and the very first photo she showed me of Moriah's face--to this day, I can tell you exactly which of the photos this was--the very first one, I looked and said, "But she doesn't look anything like I thought she would look!" I had this flash of concern...something was WRONG with our baby...and then it was gone, buried underneath my rationalizations (didn't I usually think babies were ugly? didn't newborns usually look strange?). But within minutes, it became clear to me that Jason was having a very serious conversation with the pediatrician. Amanda must have thought so, too; she left me then, and went and listened, and Jason looked over at me from across the room, and something about his look made me think, "Oh my God, Oh my God, please, please, let her be okay." And all the while I was telling myself that it was probably something easy, like her hips (which are often disturbed during a C-section), or her lungs that didn't clear, or something like that. Amanda came back over to me (thank God she was there!) and I will never, ever forget her words: "Melissa," she said, so quietly and warmly, "it looks to us like God has given you a VERY special baby." And right away, my joy-tears turned into sobs (this, of course, while I'm still lying open on the table and hoping I'm not shaking too much for the doctors to finish). "We think your baby has Down's syndrome," Amanda went on, in that very gentle voice of hers. Jason brought the baby to me then, and it was my first real look at her, and the first time I touched her, and I was crying hard...crying because she was there, crying because she was not okay. I don't really remember what Jason and I said to each other, then, except that she didn't look like I wanted her to look, and that we would be okay, and that we were going to be okay. And I think I told him then, "It's not fair to the boys," and we were both so sad, to think of adding another burden to their already burdened lives. When I think of us--Jason on a stool near my head, me on a table with only an arm free, crying our hearts out before our friends and family knew we were already scarred--this makes me cry even still today. And that's when I have to remember the rest of the story, because we weren't alone.

Jason left then to go with the baby upstairs...already a concern about heart issues had been raised as a possibility, already we were worried, as we had friends with a son with DS who had needed open heart surgery. Amanda, thank God, stayed with me. Over and over she kept saying, "Melissa, I know a litle about your family, and all I can say is that God must know that you're the kind of family that can take care of a special baby. He must know you take in kids who need love. And when He was looking for a family to give this baby to, He couldn't have chosen a better one than yours." I was so grateful to Amanda in those moments, because her words brought me so much comfort, and helped to bring light in what otherwise would have been an hour of absolute despair for me. Many, many times I've returned to what she told me then, returned to the kindness of God for Moriah, the soft spot He must have in his heart for her, the determined way that he made her, just as she is.

I went to the recovery room after that (well, after looking at my placenta, which I was pretty stoked to see...in retrospect, I think I felt like at least my body had made SOMETHING right), and Jason and Moriah came down, and Amanda helped me to feed Moriah for the first time. We began talking about her name then. Originally we thought we'd name her "Olivia," but looking at her, and looking blearily into the future we could imagine for her, we just didn't feel the name fit. Our second choice, "Moriah," seemed so much better...a name that recalled Mount Moriah of the Bible. In Hebrew, the word means, "teaching place," and we figured even then that God had given her to us so we could learn some things--already in that first hour we were struggling against having a "special needs" child and confronting our limited ideas of personhood and wholeness. Also, Mount Moriah is a place on which God provided a ram for Abraham at exactly the moment he needed it, and we felt that this, too, was going to be important for us as we raised her, to trust that God would give us what we would need for her, right when we would need it. When our sons joined us in the recovery room, we talked about her name with them, and the four of us agreed that she was Moriah. Moriah Pearl (after my late father's mother) Winchell.

Moriah was doing so well, and came up with me to my room then, and we spent a few hours with family members, all of whom were aware of Moriah's diagnosis and struggling, as we were, with joy and sadness, all at once. In the early afternoon Moriah was taken to the nursery for labs. An hour later she hadn't returned. 90 minutes. Two hours. I insisted that Jason walk to the nursery and take Moriah back--perhaps they had forgotten I wanted her in-room? He went, and came back with bad news...Moriah was having trouble breathing, and was having her heart examined later that evening. It was possible that she had congential heart disease (over 50% of kids with DS do) and if so, she would need to be transferred to Boston Children's.

I don't really remember the order of events after that. I know I tried to sleep, but couldn't. I know I tried to go and see Moriah in the special care nursery. Jason wheeled me there in a wheelchair, and Moriah was in an oxygen tent on a high crib...too high for me to see well from my chair, and when I tried to stand to see her and be with her, I found I could only stand for a few moments. I collapsed in the chair, exhausted by the effort, and absolutely anguished to know that I was physically unable to be with my daughter at her bedside. Jason insisted then that I return to bed and I cried the entire way back, feeling absolutely weak and helpless and unable to care for my baby when she most needed me. Unable even to be near her. I also remember that during the evening my best friend Val came and sat with us, and that my sisters and my friend (not the midwife) Amanda came soon later. I know I cried hysterically while they all stood around my bed and told me it was going to be okay. And I know we eventually got word that Moriah did have holes in her heart, and did need to go to Boston, and would be going that night. I could, they hoped, follow in the morning, and be transferred to Brigham and visit Moriah via footbridge in a wheelchair (which is what exactly what happened). I remember feeling like I couldn't breathe after this news, and having a terrible panic attack, and the kind nurses insisted I take some medicine and get some sleep, and I remember feeling how wrong that it all was, that I would need care and my daughter would need care, all at the same time, and that we couldn't be together. But I did take the medication and it helped me to get calm enough to sleep, and Jason stayed by my side until the med flight team wheeled Moriah in to me (this was probably around midnight) so that I could see my sleeping baby in a hugely-scary transport incubator. They opened an armhole in the contraption, and I reached my hand in from my bedside (again, the photo is probably on Facebook) and told my daughter good-bye, and that I would see her in the morning, and that tomorrow, for goodness sake, tomorrow would be better, and that I loved her.

Because, I guess, that's what mothers do. They hope for their children, and say hopeful things, even when inside they are pretty sure that their life just went to hell in a handbasket, or in a transport module on its way to a Cardiac ICU.

And that, my friends, was Moriah's birth-day. I have said during this year that it was a horrible day because I had never until that day felt the panic, the terror, and the anguish that I felt then. It was the first of many weeks to come of feeling that way, and of facing fear head-on, and plodding through, and spending nights in hospitals. But also, also, it was a day of great presence. We were not alone. This, I see now as I have written it, is the refrain I will take with me during tomorrow's celebration. We were not alone. A midwife with God-kissed words. Nurses with drugs. Family with balloons and presents and love. Friends who sat and cried. We were not alone.

And I want to say this, as I finish now what has been a longer re-telling than I thought: the greatest anguish of the year for me is the acute sense that God has abandoned me. I am a blessed woman; I have grown up surrounded by feelings of God's presence, his love, his favor, his voice, his leading, his direction. I have experienced God's absence before, much in the same way that the biblical writers describe it ("Why have you abandoned us, O Lord? Will you forsake us forever?"), but felt it more acutely this year. I know what so many of the great Christian writers mean when they write of the dark night of the soul, or the darkness of God himself. I struggle still with this, struggle with feeling like I have "paid my dues" now and that God should be kinder to me, should show up in the ways that I expect, should do what I'd like for him to do right when I'd like for him to do it. I want him to play nice, in the way that I define nice, of course. But God isn't like that. He is wild, and free, and wise, and strong, and huge, and...and, loving. In writing this out tonight, I see even more clearly how he has not left us alone...not just that day, but in the weeks to come, in the months to come, in the year...the year that has now passed. We are not alone.

The very first song I ever sung to Moriah, and the song I returned to again and again in the Cardiac ICU, the NICU, the Special Care Nursery, came from this portion of Scripture: "Because of the Lord's great love we are not consumed! His compassions never fail. They are new every morning. Great is his faithfulness!" (Lamentations 3). Over and over I would sing it, sometimes mocking myself ("Faithful?! If THIS is what faithful means, then maybe you'd rather not have it"). But still, I'd sing, and Moriah would watch me, and many of those times (not always, as God really isn't as predictable as that) I would feel a blanket of peace. So tonight friends, I want to say, Moriah's birth marked for me the strangest, and frankly, darkest year of my life. But I am not consumed! And, for all my failings and doubts and craziness, I am loved by a faithful God! His compassions never fail, and every morning, we wake to a new beginning in His love for us.

Happy birthday to our Moriah. Moriah, through you we are learning to trust God's provision, even though it often seems like he could have shown up sooner and spared us the mountain-climb and the sacrifice. Abraham met God on Mount Moriah; so, too, Moriah, we are meeting God again through you, and the climb we trust will be worth it, the view from the top greater than we could have ever seen otherwise. Great is HIS faithfulness, our daughter. Greatly you are loved.