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on sadness, the scarlet letter, and building a new community.

May 29, 2012

I spent the long weekend at home. Actually, I spent all of Saturday in bed, with back spasms and creeping sadness as bedfellows while papa and the kiddos went to two separate parties. It’s funny how days can fly by, one after another when you’re busy and happy, and then seem to last an eternity when you are suffering pain, or grief, or both.

On Friday I deadheaded my roses, transplanted some hostas, took the kids for a walk along the river, drove down to the farm to pick up 12 quarts of strawberries, canned 6 pints of jam, went grocery shopping, baked three strawberry cakes—one for each party and one for us at home, made dinner, spent time with michael and fell into bed bone tired. Saturday morning I woke up completely depleted, weary with back pain and exhaustion. I opted to stay home while the rest of my family set out to party—it was hot, suddenly summer, and I was ill-prepared, cranky and hot. I don’t like having to be sedentary at parties, I like to participate and help and mingle and keep an eye on the kids, and I knew that the pain in my back would force me to sit, uncomfortable and unhelpful, so I opted to stay home in bed, in front of a fan, and finish reading “Wildwood” while napping off and on through the day. By the time my family came home close to 9, the kiddos were already well on their way to dreamland, and I was wide awake. Michael was asleep by 9:30, a long day of child wrangling, driving and heat behind him, and I was alone in the house. That is when the sadness began to creep in.

As I lay in the dark, feeling whorls and hiccups and kicks in my belly, I began to feel so sad that this pregnancy has not been met with the joy it deserves by my community.  I am nearly in my third trimester, and I haven’t heard more than a handful of congratulations or acknowledgements. People in my community are weary of saying anything about my growing belly, and so avoid me. I have had a hard time finding a midwife who hasn’t “risked” me out of her care sight unseen or that I trust and feel safe with,and as such, I am settling for a midwife who is far away, has a terrible office staff, delivers in a crummy hospital and  operates in a very traditional “medical” manner. All because I am supposed to, in most people’s eyes, hide and feel shame for being pregnant.

Last year, I gave birth to a daughter with profound medical problems and Down Syndrome. She required open heart surgery shortly after her birth, needed a feeding tube and had gastrointestinal complications and a host of other health issues. I had been planning a homebirth with her, but my gut instinct told me something wasn’t “right”, despite being told by people in my community that everything would be fine as long as I stopped stressing and “inviting” bad things to happen. I was told by my friends, and by birth professionals, to trust the birth process, that I could “(wo)manifest” health and ease for my pregnancy and birth, and that by seeking out invasive tests, I was inviting trouble and bringing unnecessary stress to myself and my baby. Except that I wasn’t. Instead, I trusted my instincts, I sought out a perinatologist and went for several ultrasounds. Unsatisfied with the findings, I sought out a second perinatologist and was prepared to pay out of pocket for a fetal echocardiogram, because I went in without the required referral for insurance coverage. I didn’t end up having to pay, however, when it was discovered that my intuition was right, that my baby had a profound heart defect. There was no room in the high risk delivery ward at CHOP because I was already 32 weeks pregnant, and so arrangements were made for me to give birth in a nearby smaller hospital with a “medwife” and then have the baby transferred to for surgery after her birth. We were diagnosed with IUGR and I had an amnio to determine whether her lungs were strong enough for a potentially early induction and to determine, once and for all, if she had T21. The results came back that we should try and wait for delivery, and that she did in fact have Down Syndrome. As we prepared for what life might look like with all of these special needs before us, we were told that upon consideration of her condition, she was considered “medically fragile” and what that diagnosis would mean for her, for us and for our other children. We were introduced to therapists and social workers. We were handed a phone number, and we called. There was a family in our area looking to adopt a medically fragile child, who were prepared for all that entailed –medically, emotionally, and financially. We were initially insulted by the suggestion of adoption, but agreed to meet the couple. We saw them on the street in Philadelphia, amid hundreds of other people and singled them out, thinking, “oh, they’d be perfect” and when they walked in the door of the café where we were to meet them, I couldn’t believe it. We talked for a long while, and began to feel like this could be possible. To admit that they were better suited to provide the least restrictive, most supportive environment for her to grow than we were. We cried. I cried for days, and literally didn’t get out of bed. I couldn’t eat without vomiting. I went for non-stress tests and met with more specialists, therapists and surgeons.  We decided to place our baby girl for adoption. I stopped crying so much, and stopped vomiting. We packed away the tiny clothes, the diapers, the little blankets and tiny socks, we sent the carseat back, and on my birthday, just four days before she ended up being born, we told our children.

It was hard. God.I did my best to choke back tears. My littlest cried and cried, at four years old she didn’t really understand, but her empathy won out and she cried the tears I stoically held back until we I gave up and we sobbed together. My older two were so eloquent about their feelings, expressing relief that she would be cared for and be all right, having been terrified that she would die and they would feel responsible. cConfessing they had been so scared—of the equipment we were going to need, the tubes and monitors and devices necessary to keep her alive and healthy, of my always being stressed and sad. My oldest, homeschooled since birth, confessed she felt guilty for her relief, as she was dreading the idea of going to school, which would have been part of the “new normal” had we brought her little sister home. I cried and cried some more. We all cried. We went for a walk, the kids played quietly together on the porch, we had asparagus and pasta with lemon cream sauce for dinner, sang  a half-hearted “happy birthday” to me and went to bed, all of us exhausted. Three days later I had a non-stress test and baby was in distress. I was sent upstairs for an induction, and I had 24-hours to give birth on my own before she was to be surgically removed from my body. Exactly 24 hours and four minutes after I was admitted, our baby girl was born. Tiny, blue and quiet, I held her briefly before she was whisked away to the NICU, and ultimately to her surgery. Her adoptive parents were with her from the start, which gave me much comfort as I was wheeled off to recuperate in a private room and ultimately go home the following morning.

We sent messages via facebook and email to our friends and community honestly explaining all that had gone on. We received some supportive calls and messages in return, but once we I had healed and we were out and about in our community, we realized that the support was mostly just niceties and that many people viewed us through a lens of Schadenfreud, and were friendly out of morbid curiosity. Even among my closest friends, no one knew how to talk to me, how not to blame or judge me, how to not be put out by how “needy” I was, and within six months, I had lost many of my “inner circle” friends, my community. I wasn’t sad about it, because I felt like I actually deserved better than what I had been settling for, and instead put my energy into the friends who stood by me, by my family, and who understood that of course I was needy and sad sometimes, but that I also needed to keep living, to find joy, and that my kids needed love and friends and normalcy, and that I wasn’t heartless or evil for ever smiling or laughing and not walking around with a scarlet “A”, for adoption or abandonment or asshole, whichever I guess. I was sad to lose these friends, to suffer disappointment in people who I had loved, who, in the past, I had lifted up in their times of need, who I had listened to, cried with, who I had cooked for and cared for and gone grocery shopping for, who I had loved without question. I was hurt, yes, and I was sad, but I took comfort in the pleasant surprises—the folks whose kindness outshone that darkness and ugliness–and I put forth renewed effort into cultivating those relationships into stronger friendships, because despite having different taste in music or clothes, or not subscribing to the same parenting or political philosophies as me, all these superficial, formerly important things didn’t matter because these people, these good people, proved themselves with actions, with love and deeds and not just words.

Which brings me to where I was on Saturday night. My community of friends now–my loved ones, my champions, my circle—they cannot protect me or inoculate me from how unkind others can be. I have been ostracized, gossiped about, whispered about and ignored. I have been joked about and mocked. Sometimes by people who once claimed me as “sister”. The sadness creeps in. And now, as my family prepares to welcome a new soul, and we try to cherish this time together before the upheaval of a new addition and all the sleepless nights and divided attention that will come with him(yes him, you are rewarded for reading this much with the knowing that the babe we expect in September will be a wee fella), I am faced with amped-up community scorn. With dropped jaws at the sight of my belly, and diverted eyes. With jokes at my expense on mutual “friends” Facebook pages. With unreturned phone calls from home birth midwives and doulas in my community who I am looking to hire. And so, sometimes, the sadness creeps in. The sadness in knowing that I will birth in a hospital, and that I will not have a chance at the reclaimation of power that came with my previous homebirth. That this baby will be born into a smaller community than his brother and sisters, and maybe have fewer opportunities for  friendship or playmates. But there is comfort that his community, our community, will be stronger than ever, more full of real love and connection, and it is that knowledge that gets me out of bed despite the back spasms, despite the sleeplessness and sometimes sadness, it is that burgeoning community that I want to contribute to–those people I want to share meals with and talk and laugh with into the night. The community of people who do not expect me to feel shame, who rather delight with me at possibility and sometimes cry with me when I am low. Who love me, trust me and believe in me.  The people I believe in, my little village. So Sunday morning, I got out of bed after barely sleeping and I took my kids to the park. We brought deviled eggs and a quart of strawberries and a half gallon of sun tea, and we flew a kite. It was hot, and I had to fight to stay present and not feel sorry for myself, to climb into bed in front of that fan, but I fought and I won. We had a cookout and turned the sprinker on and  I laughed with my kids as we cooled off from the heat. Monday we stayed home, had a bonus “connection day” as a family as it was Memorial Day and enjoyed more sprinkler play, gardening and lazing with books and cold drinks. I sat with my oldest and planned a Midsummer party, and we talked about our circle of friends–how it might be different with this group of folks who aren’t “Waldorf inspired” or “holistic mamas” and how that might be better. How lovely time spent with friends are, how delicious the popovers one friend makes and how great a dancer another is. We talked about how she is getting to know some new friends in this new circle, how nice they are, and how she is so grateful for these new friends and her “old friends–the friends who know all about her sometimes sadness  and love her through it. I told her I feel the same way about my friends, and that I love this new community we’re weaving of disparate parts, all so full of love and  tenderness and talent and kindness. I love this new village, these steadfast true souls, their support and commitment to community that keeps us all going when we’re low. It’s more than enough. It’s love.

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