To my girl

Dear Maren,

I had a bit of a breakdown last night. You haven't met Kristen yet -- she lives kind of far away -- but she was one of Mommy's best friends in college. She was an English major, too, so she sent the perfect gift -- a book! She wrote a really nice inscription inside, which made me a little teary-eyed, but it was the book itself that made me cry: Charlotte's Web.

When I was a little girl, I read Charlotte's Web but couldn't get through the ending. My mom, your grandma, found me sitting and crying on the couch. She said she'd read it to me since I was crying too hard to read. Pretty soon she was crying too hard to read, too.

It made me so sad, thinking about that moment with my mom, when I was so little, and realizing I will never have a moment like that with you. There are a lot of things I always thought I would do with my daughter, and it breaks my heart to know we won't have the time I hoped we would.

I wanted to read the Anne of Green Gables books with you and then take a trip to Prince Edward Island. I thought we'd play Barbies like my little sister and I used to. I looked forward to passing down my much-loved Cabbage Patch Dolls and watching you play Mommy. I wanted to read the Little House on the Prairie books and make you an old-fashioned dress and bonnet to play dress up.

Another friend of Mommy's lost her baby just a few weeks into her pregnancy not too long ago. When I told her I was sorry, she shook her head and said it was nothing compared to what we're going through with you. I said she was wrong -- losing your baby hurts no matter when it happens. You see, Maren, the minute we mommies find out a little life is growing inside us, we start dreaming. Long before you are born, we have hopes and plans for you. Trying to let go of those dreams hurts, no matter how long or how short the dreaming was. So even though we've known for a while now that we won't have all those special moments with you as you grow up, it still hurts so much to think about all we'll miss out on.

Thanks for the kicks last night while I cried, sweet girl. You give me beautiful reminders to enjoy the time I have with you. I wish we could have years and years, but I'm thankful for the days and weeks and months I've been blessed with. You are so precious to me.

Love,
Mama

Gratitude

My friend Leslie sent me a care package this week (Thanks, Leslie!) including a gratitude journal based on Ann Voskamp's book One Thousand Gifts. Kevin and I sat down tonight -- after James was in bed and before Downton Abbey started -- to fill out the first pages. Our goal was to come up with the first fifty things on the list of 1000. We started out with what you'd imagine -- James, our family, our jobs, our friends, etc. -- then slowed down. I asked Kevin what makes him happy; the next three items on our list were "bucket garden, beer making, Costco." Costco. For real. We decided we have to hide the journal so no one will ever read it but us, because who wants to see their name on our list AFTER Costco? Ouch. ;)

In all seriousness, though, I was thinking this week about how thankful I am to be in Iowa City. It's no secret that I wasn't thrilled to move here. When Kevin got the job at UI, we had been in the La Crosse area for less than a year. It had taken us a while to make friends, find a church we liked, and get settled in to our little apartment; those things were finally happening, so I wasn't excited to leave. Kevin hated his job, though, and had loved Iowa City when he went to grad school here. He was thrilled at the possibility. I was looking forward to him being happy again, but not to start over.

Now, though? I'm so thankful we're here. On one of our recent visits to the hospital, Kevin and I commented that if we didn't live here, we'd have to take a day off of work every time we had a doctor's appointment. We are blessed to be so close to such a good hospital.

I'm also incredibly thankful for the size of the hospital. Earlier this year I was complaining about how big it is. Where I grew up, you parked in the parking lot, then walked into the doctor's office. Here, we have to drive up four floors of the parking garage, take an elevator down two floors, walk across three skywalks, go up another elevator, and then -- finally -- we can check in. Sometimes it takes as long to get to the doctor as to actually see the doctor.

But this giant hospital has its advantages: pretty much everything you need is here in one place -- even things you didn't know you needed -- and that was the biggest reason for my thankfulness last week. My last visit was just a normal prenatal check-up, but afterwards I spent some quality time with the hospice nurse we've been working with. Talking with her is so comforting. She reassured me that the two qualities she's seen help people get through losing a baby -- faith and humor -- seem evident in our relationship. She's also connecting us with another local couple who lost a baby a few years ago to Trisomy 13, and helping us set up an initial appointment with the counselor who works with parents going through issues with pregnancy.

It's a good practice -- keeping our thoughts on positive things instead of sadness. We're thankful for so much, including our sweet girl Maren.

Maren Elizabeth

All my posts are such downers -- let's talk about something happy for a change, shall we? Her name. We get lots of questions about that.

First off, how do you pronounce it? I tell people the first syllable rhymes with car or jar or bar. MAR-en. I know some people want to pronounce it MARE, like a female horse, but I'm told MAR is the traditional Norwegian pronunciation, which leads to . . .

What kind of name is Maren? Well, it's Norwegian. Here's the story. When we were pregnant with James, we didn't know if we were having a boy or a girl, so we considered lots of names for both. One Saturday morning, Kevin was checking out baby names on a Norwegian baby name website.

For those of you who don't know Kevin very well, he's only one-fourth Norwegian, but he thinks he's a full-on VIKING.

"How about Axl?" he asked. Um, no. Reminds me of Guns n' Roses. "Tor?" he tried. Nope. Makes me think of a ripped page in a book. He didn't get much more positive responses to the girl's list until he said, "Maren."

Every teacher knows how hard it is to find a name you like that hasn't been forever ruined by some student. I'd only met one Maren in my life, twenty years earlier when I was a camp counselor. She was a sweet and spunky little fourth grader, so the name had zero negative connotations connected to it. It was put on the short list, and by the time we went to the hospital a few months later, Maren was our girl name and James was our boy name.

When we found out we were pregnant again, we agreed we both still liked Maren and would call her that if she were a girl.

Now for a middle name. I always thought if I had a girl, I'd give her my middle name, Ann. It's also my mom's middle name, and her mom's name was Anna. I like a little family legacy. When we went to the hospital to have James, we were coming home with either Maren Ann or James Nils. (Nils is Kevin's middle name, and yes, Norwegian.)

But at that twelve-week ultrasound, when the doctor warned us that there was likely a problem, I started thinking of a different middle name. Chances seemed high that our baby had Down Syndrome. I had a feeling she was a girl, and although we've come a long way as a society, there are still a lot of ignorant people who would look at her funny or even call her names. She was going to have to be a tough little girl, so I began thinking of her as Maren Elsie Anna. Elsie and Anna were my grandmothers, two of the greatest ladies I ever knew. I felt like giving their names to my little girl would be giving her an extra shot of strength to get through the many challenges of her future.

After the amniocentesis, it became clear Maren would have a very short life. We've had to make decisions I never imagined we would, like selecting a tiny coffin and choosing a burial site. The thought of seeing my grandmothers' names on another tombstone was too much. I scrapped the idea before I even talked to Kevin about it.

Elizabeth had been on my list of girl names two years ago. I love classic names (like James) because there won't be five of them in first grade, but it will never be completely unpopular either. Elizabeth also happens to be the name of the heroine of one of my all-time favorite books, Pride and Prejudice. But more than anything, we got the Trisomy 13 news during Advent, and the Biblical Elizabeth was on my mind. I can relate to Elizabeth -- although not nearly as old as her, there were times in my life when I wondered if I'd ever have a child. And knowing Maren's diagnosis, I prayed I'd feel lots of movement like Elizabeth felt John leap in her womb. Our prayers have been answered in that way, as our little soccer star kicks throughout the day and night.

So there you have it, the story behind Maren Elizabeth, our little Norwegian princess (no relation to the cruise line). Thanks for praying for her!!

Trying Again

Someone asked me this week if we'll try again. Ugh. There are several things I could say about that question, but to answer it, I don't know. I don't think I will know for sure until a lot farther down the road.

James LOVES babies right now. Anyone his size or smaller gets called "baby" when he sees them. He loves books about babies. He adores the baby girl at daycare. I would love it if he could be a big brother.

But the thought of going through this again? I don't think I could handle it.

The genetic testing they did along with the amniocentesis showed Trisomy 13 was just a fluke. Kevin doesn't carry anything, I don't carry anything, and together we don't create anything. But the chances . . . 1 in 10,000 babies is born with Trisomy 13, and somehow we were that one. If it happened once, it could happen again, right? It's not likely, but it's possible . . . and that 1 in 10,000 possibility makes my stomach churn.

I know I'm not handling this all that well. I read all of these really nice texts and emails and Facebook messages, and I don't respond. People can't leave voicemails for me anymore because I let all my calls go to voicemail and then never listen to them or erase them. I'm hopeful my true friends understand and won't hold it against me, but I'm aware enough to realize I'm isolating myself, and that's not good.

So to get pregnant again knowing I might have another baby I won't get to bring home? My current state x 2 = probably not a great idea.

So to go back to the original question, I don't know. And I don't think now is the time to make any major life decisions.

What bothered me more about the question, though, was that it felt really dismissive of Maren. Right now, I don't want to think about other babies. I want to think about her. She flipped in the last twenty-four hours -- instead of kicking low, she's now kicking up high. Every kick feels like such a gift. I love her more and more every time I feel her. I don't want to pass over this time with her and start thinking about another baby. As hard as it is, I'm so thankful she is ours.

Ultrasound

We got to see our girl again today. She is so beautiful.

It was pretty emotional. I suppose bittersweet is a good word. At one point the ultrasound technician asked if I was okay. "They're happy tears," I choked out. It was half true. I'm still praying fervently that she will be born alive and we'll get to see her look at us and feel her little fingers wrap around ours, but I am well aware of that 50% chance of stillbirth looming over us. If that happens, this might be the last time we'd get to "see" her alive. I couldn't get enough of her.

Her little heart was beating. Her arms were sometimes reaching for her feet and sometimes up by her face. She hiccuped at one point. She looked so perfect. It's hard to believe there is so much wrong when she seems so strong. Questionable hypoplasia. Cleft lip. Cleft palate. Questionable smaller left ventricle. Abnormal cardiac position. Abnormal stomach position. Abnormal left kidney. Abnormal umbilical cord. So many problems for such a perfect-looking little person.

The technician was so good and so kind. She gave us permission to record a little bit, even though it's against hospital rules. She printed off beautiful pictures for us. I couldn't stop staring at them. Now they're hanging on our refrigerator so I can see them every day.

The doctor was positive. My body is doing it's job, producing the fluids and nutrients Maren needs. She's right on target for growth, which the doctor said is surprising since Trisomy 13 babies are often smaller than normal.

I asked a hard question I've been thinking about. Well, I kind of asked. Trying not to burst into tears, it didn't come out too eloquently. I wondered, though, if Maren's inevitable death could mean life for someone else. Our doctor quickly shot down the idea of organ donation. With her chromosomal abnormalities, there's nothing they can use. A part of me is relieved -- the thought of sending my tiny, beautiful child into post-mortem surgery for organ harvesting is heartbreaking -- but a part of me would have been comforted knowing that some part of her lived on in some other child.

The doctor seems hopeful -- she asked us to schedule appointments every two weeks for the next two months. We'll just keep praying and counting kicks . . . and staring at those photos on our fridge.

Weakness

You're so brave. You're so strong.

Oh, friends. Am I really putting on that good of a show? I guess I may have moments of strength, but most of the time I feel incredibly weak. Were I not propped up by my faith and my husband, I'd be a wallowing mess of tears and misery. Don't let my words in those moments of strength fool you.

One of the vocabulary words for my high intermediate ELL class last month was "endurance." In easily understandable English, a simple definition they came up with for "endurance" was "not stopping, even when things are hard." I feel like life has been an exercise in endurance the last two months.

Days aren't so bad. I've never been so thankful to have a job. Even the two boys who are total stinkers are a blessing in disguise. I'm so busy and distracted at school that I don't have a lot of time to think about what's going on with Maren. When I get done with work, I've got about three hours to squeeze in all the time with James I can get, so that's a busy, no-time-to-think time, too. Then there's laundry, cleaning, conversations with the hubs . . . I can stay distracted 'til about 9pm.

But the nights. They're the worst. I can't tell you how many nights I've cried myself to sleep. Sometimes I can keep it quiet. Sometimes it's so loud Kevin hears me from the living room and comes in to hold me. Saturday night was one of those really bad nights. I couldn't seem to stop. At one point, between sobs, I choked out, "Why us?" After a while, between more sobs, I apologized to Kevin for not being the same woman he married three and a half years ago; besides feeling so much grief for Maren, I'm also feeling afraid that this will change who I am as a person and a wife and he won't see me the same way he used to. I cried so long and so hard I woke up with a headache Sunday morning.

Later that morning in church, I was thinking about my great-aunts who lost multiple babies. I thought of my friend's grandma who told her they never had baby showers before babies were born, because babies were as likely to die as to live. I realized that modern medicine has made us forget how fragile life is, and how not too long ago a lot of babies died. How did those women get through it? I wish those great aunts were still around to coach me through this.

I looked at James that afternoon and again asked "Why us?" . . . but this time I was thinking how blessed we are to have one healthy, happy child . . . what an undeserved gift he is . . . what a miracle it is that we created this adorable little boy.

So, no. I don't feel particularly brave or strong. But I still feel blessed.