Healing

It's hard to believe it's been two months since Maren was born. Sometimes it feels like yesterday. Sometimes it feels like years ago. Sometimes it feels like it was only a dream.

A good friend reminded me there's no rule book when it comes to grief. There's no set way of grieving you must follow or a timeline for when it needs to be finished. Another friend said sometimes it feels worse as time goes by because your loved one is more quickly forgotten by people who weren't as close to her while the wound is still deep and fresh for you. I'm blessed to have such friends.

I'm slowly working my way through A Grief Observed by C.S. Lewis. I've read and reread this passage that gives his thoughts on "getting over it":

“Getting over it so soon? But the words are ambiguous. To say the patient is getting over it after an operation for appendicitis is one thing; after he’s had his leg off is quite another. After that operation either the wounded stump heals or the man dies. If it heals, the fierce, continuous pain will stop. Presently he’ll get back his strength and be able to stump about on his wooden leg. He has ‘got over it.’ But he will probably have recurrent pains in the stump all his life, and perhaps pretty bad ones; and he will always be a one-legged man. There will be hardly any moment when he forgets it. Bathing, dressing, sitting down and getting up again, even lying in bed, will all be different. His whole way of life will be changed. All sorts of pleasures and activities that he once took for granted will have to be simply written off. Duties too. At present I am learning to get about on crutches. Perhaps I shall presently be given a wooden leg. But I shall never be a biped again.”

There was a night about a month ago when I looked in the mirror and had to look away. I looked so normal. I looked exactly like I did before I gave birth to Maren and then buried her less than a week later. It seemed like a betrayal -- like I should have some sort of visible scar or at the very least a Scarlet Letter-type badge that tells the world I bore a baby girl and she was beautiful and cherished. Instead I'm grocery shopping and helping at Vacation Bible School and spending time with friends and generally going about life in a way that probably looks like I'm "getting over it." But like C.S. Lewis says, I may be getting about, but I'll never be the same again.

And really? I'm okay with that. Because erasing the pain means erasing my baby girl, and it's not a trade-off I'd ever want to make. I heard "The Dance" by Garth Brooks on the radio a few weeks ago and thought, "Man, I haven't heard this song in years, and it takes on a whole new meaning after Maren." Holding you, I held everything. Yes, the tears are coming less frequently. Yes, it still hurts. But no, I have no regrets. I could have missed the pain, but I'd have had to miss the dance. I wouldn't trade my time with my sweet girl for anything.

A God Moment

After a not-so-great day on Monday, we decided to take a little day trip on Tuesday. Maren was buried in a beautiful casket built by the brothers at New Melleray Abbey from trees grown in their forest, a ministry they provide free of charge to families who lose children. We drove there and saw where her little casket came from and thanked them for blessing our girl with such a gorgeous gift.

The "God moment" of the day came before we even got there, though. I'm always amazed at how He orchestrates things.

We stopped in a little town called Mt. Vernon for breakfast. We had to park halfway down the block, and as I got out of the car, I saw a t-shirt in the shop window that instantly made me think of Maren. At her visitation, someone called her "the little missionary." She touched so many people in the short time she lived, and she continues to help kids as memorials in her honor arrive in the mail every day for A Better Life for Kids. One person -- one tiny little person -- can do so much.

As we ate breakfast, I kept thinking about the shirt. I feared it would cost an arm and a leg, being in a little shop in a little town. Then I remembered that Sunday is Mother's Day, and I doubted Kevin had gotten me anything yet. I asked if he wanted to stop in and buy it for me for Mother's Day, and he was happy to oblige. (Trying to figure out what to get me for Christmas/my birthday/Mother's Day/etc. is torture for the poor guy.)

We stepped inside and I was totally thrown off -- I was expecting a boutiquey kind of shop, but instead I saw a wall of different t-shirt designs, a bunch of soaps, and something that looked like a big printing press. I looked around in confusion, wondering what I had just walked into. About that time, a guy our age appeared and explained they're a fundraising company, One Mission Fundraising. People from all over the country use their little shop to raise money for adoptions or youth group mission trips or whatever their need. Very cool. I picked out my t-shirt size and his wife fired up their t-shirt making machine.

As I paid, they asked which fundraiser I wanted to support with my purchase -- 40% of each sale goes to the person or group supported by the fundraiser. I did a shoulder shrug, not really sure who or what to support. Having found out earlier where we lived, he said, "How about No Foot Too Small? They're in Iowa City." My stomach did a little flip-flop. They raise money for research to end premature births and birth defects. They also support families who lose babies.

I teared up, knowing God made this happen. This couple had no idea we were on our way to see where our baby's casket was made. They didn't know we lost Maren just a week and a half ago. They couldn't know how perfect the suggestion was, and that by buying a t-shirt to remind me of my baby girl, I could also support other families who've lost their sweet children.

So today, instead of wallowing in sadness, I'm remembering the God who cares for and comforts me . . . and I'm so thankful for the ways He continues to surprise me.

Missing Maren

I'm having a rough morning. When I woke up, I thought, Two weeks ago at this time I was calling my mom and announcing, "You have a granddaughter! She's alive and she's beautiful!" But two short weeks later, here I am with empty arms. It seems like yesterday. It seems like a lifetime ago. People tell me it will get easier with time, and one day she won't be my first thought when I wake up in the morning.

As Maren was dying, I had a memory of a made-for-TV movie I watched when I was a kid. It was called Alex: The Life of a Child and was the true story of a little girl with Cystic Fibrosis. Craig T. Nelson from Coach played her dad, and the scene I remembered showed little Alex requesting root beer as she was dying. Of course there was none in the house, so her dad drove like a maniac to the closest store, then rushed home with it. She took a small sip, said, "Thank you, Daddy," and then died.

I remembered this because at one point I thought sweet Maren felt cold, so I asked Kevin to go and get her little hat. He did, and as he walked back toward us with it, he breathed warm air into it so it would be warm when he put it on her tiny head. For the rest of my life, I will remember that tender gesture. He was such a good daddy to her in the short time we had.

And as I think about those acts of love performed by earthy daddies for their little girls, I can't help but be thankful, because I know the love of earthly fathers is just a shadow of the love our Heavenly Father has for us. I know Maren has been shown even greater love in heaven since leaving us here on earth.

But I also have to remember he's not just Maren's Heavenly Father; he's my Heavenly Father, too. Through all of this, he's been beside me, arms wrapped around me, crying with me.

The sad truth about miracles is that they're like everything else in life -- once you've experienced one, you want more. After those three days, I wanted three more, and had I gotten three more, I would have wanted another three. I miss my girl. I try to focus on how wonderful those three days were. I try to remember I'll see her again. But right now, the hurt is what's bubbling to the top.

Obituary

Maren Elizabeth Roiseland, daughter of Kevin and Tiffany Roiseland, burst into the world at 4:20am on Monday, April 18, 2016. She blessed her eternally grateful family with three and a half beautiful days before returning to her heavenly father on Thursday, April 21, 2016. During her short time on earth, she blessed her parents, brother, grandparents, aunts, uncles, and cousins with the sweet gift of time. She inspired many by beating the odds and fighting 'til the very end.

During her nearly 38 weeks of life inside Mommy, Maren showed her love through lots of kicks, especially while reading stories with big brother James or when James sang Twinkle, Twinkle Little Star to her and kissed her good-night through Mommy's belly. After her arrival, she was lavished with his kisses, gentle touches, and announcements of "Baby Sister!" whenever he set eyes on her.

Maren's family will always remember her glorious hair, her perfect little fingers and toes, and her sweet, soft cheeks. She grew more and more beautiful every hour. For her three and a half days on earth, she felt nothing but pure love.

We imagine that upon entering heaven, her big brother Sam greeted her and yelled, "Come on, Maren! Come on!" then led the charge as they together ran into their Heavenly Father's arms.

Rest in peace, sweet girl. We love you.

Good-bye, Sweet Girl

The Lord gave, and the Lord hath taken away; blessed be the name of the Lord. Job 1:21

Our beautiful daughter Maren Elizabeth is now peacefully resting in her Father's arms. We are heartbroken but will be eternally grateful for the three precious days we spent adoring her gorgeous hair, curling her tiny fingers around ours, and stroking what were undoubtedly the softest cheeks in the world. We praise God for the gift of time.

Thank you for your prayers throughout our sweet girl's life. We have felt nothing but love and support, which helped us ensure those three precious days were filled with nothing but love for Maren. We are so thankful for you.

Mighty Maren

I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Ephesians 3:16-21

IMMEASURABLY MORE THAN ALL WE ASK OR IMAGINE!! I am sitting here in a quiet hospital room with my day and half old baby. Day and a half!! The tears are rolling down my cheeks as I recall every aunt, uncle, and cousin meeting Maren in the last twenty-four hours. I had originally told everyone no, sorry, we want all the time she has, just Daddy, Mommy, James, and Maren. But then she stayed with us for another hour. And then another. And suddenly she had made it through an entire day. We prayed for time . . . and God has given us immeasurably more than all we asked for or imagined. We prayed for two or three hours. Enough to hold her and love her and release her back to her Father's arms . . . and we are overwhelmed with gratitude for the hours we have had.

So many people told us over the last few months they were praying for a miracle. I know many people meant a miraculous healing, that the Trisomy 13 diagnosis would somehow be wrong and we'd have a perfectly healthy girl. All along I've said the miracle would be time. With the Trisomy 13 diagnosis and a 50/50 chance of stillbirth, I prayed and prayed for a few hours with her. I didn't allow myself to hope or pray for more than that. The fact that she has been with us for so long is such a miracle. I am so thankful!! I'm also sad for other families who haven't had so much time with their precious little ones. I can't explain why we get this blessing when others don't. All I know is that I want to fall on my face in front of my Lord and cling to his feet and say thank you, thank you, thank you. I know the hard times are coming, but this gift . . . this gift . . . my precious miracle girl . . . we will get through this.

We are going home tomorrow. Home. We are taking our daughter home. We are simultaneously thrilled and flabbergasted. The hospital has contacted hospice and we'll have lots of support, but Maren will be surrounded by her family in our sweet little home. I can't believe it. I am so incredibly grateful that God has given us this time to love her and soak in her beauty. The doctors can't really tell us if we have hours or days or weeks, but we will take any time we can get. We can't stop staring at her and murmuring how amazed we are.

Last night I sang "Great Is Thy Faithfulness" to her as she slept. This song has held great meaning for me for many, many years, but a new layer of gratefulness has been added to my song of praise this week.

Great is Thy faithfulness, O God my Father. 

There is no shadow of turning with Thee.

Thou changest not, Thy compassions, they fail not. 

As Thou hast been Thou forever wilt be.

Great is Thy Faithfulness! Great is Thy faithfulness! 

Morning by morning new mercies I see.

All I have needed Thy hand hath provided. 

Great is Thy faithfulness, Lord unto me.

Thanking God for his great faithfulness tonight more than ever. And thank you, friends, for all your prayers. Great is His faithfulness.

Just a Few Weeks Left

Thirty-six weeks!! This is a major milestone, considering the doctors told us at twelve weeks we would likely lose her. Mighty Maren! She just keeps kicking away.

We had one more ultrasound Monday morning. She was hiding her face, so we couldn't get clear pictures of her, but we saw five little fingers on each hand. I know it's probably a petty thing to care about, but since so many babies with Trisomy 13 have extra fingers among their many other problems, this was a happy piece of news. As much as I try to be a realist about Maren's situation, there was of course still a part of me that hoped the ultrasound technician would look confused, go get a doctor, and bring her in to say something miraculous like, "She appears to be perfectly healthy! We can't explain it!"

But no. Nothing has changed.

The only positive news we got was that the doctor is hopeful Maren will make it through delivery alive. With her continuing those strong kicks and with no physical issues on my end, the doctor thinks she is likely to survive birth. We continue to pray she will.

An induction date has been set -- April 27. That's about a week before my due date. The doctor says since Trisomy 13 babies are more likely to be stillborn the longer you carry them, and since mothers of advanced maternal age are more likely to have stillborn babies, inducing a week early will increase our chances of a live birth.

While I'm excited to meet her after carrying her for all these months, you can imagine how bittersweet it is. All this time, we've known we could lose her at any moment, but now we have an official date set for saying good-bye. It's exciting and devastating at the same time.

Please keep praying -- that we'll continue to enjoy every kick and stretch, that Maren will stay strong through delivery, and that we will get to enjoy a little time with our sweet girl on April 27th.

Preparing

A few weeks ago we happened to drive by the hospital one night. "Can you believe it was two years ago we were going to all those classes?" I asked Kevin. When we were pregnant with James, we got a flyer about classes offered for new parents. We signed up for ALL of them: labor and delivery, caring for a newborn, breastfeeding, and infant CPR. We had no idea what we were doing, so we figured we could use all the help we could get. We were at the hospital one night a week for about three months. Even with all those hours of trying to learn something, we still weren't ready.

There were preparations at home, too. Kevin spent most nights painting the various rooms of the house we had just purchased. I insisted the baby room be done first. Three walls were a light gray, one wall was a shade darker, and the trim was white -- perfect for a boy or a girl. My dad and brother set up the crib. We had gender-neutral onesies, blankies, and cloth diapers. I packed the hospital bag a few weeks in advance based on what we'd learned in the classes, what I'd been told by friends, and stuff I read on the internet. I even had playlists on my iPod, one with fast songs and one with mellow tunes.  We were set.

Preparations are different this time around. There are no classes to prepare parents for losing a baby soon after they meet her. We're not setting up a crib, since it's unlikely we'll bring her home. We don't have adorable little pink clothes in the closet; it would be too painful to have to pack them up with the tags still on.

My hospital bag looks a lot different this time around. We have a beautiful Christening gown my sister-in-law's mom made; we are hoping to have enough time to baptize sweet Maren. We just got a baptismal candle and cloth in the mail today from a dear friend -- those are going in the bag, too. We have blankies from friends and family. We've got kits to do handprints and footprints. I've got my Bible to stamp her hand and footprints in, too.

I guess we can take comfort in the knowing. I've heard many stories in the past few months of mothers who set up the nursery, bought the cute clothes, and expected a perfectly healthy baby, only to be heartbroken. As painful as this long good-bye has been, I can't imagine how much more painful it would be to leave the hospital empty-handed when you thought you were coming home with your beautiful baby.

Maybe that's the best preparing we can do -- preparing to say good-bye.

Kevin

I wish I had a dollar for every time I heard "you're too picky" when I was single. I could have paid for my eventual wedding. My standard response became, "I'd rather be single forever than be married to the wrong person." I can understand settling when you're shopping for a new outfit, but choosing someone to spend the rest of your life with? Yeah. I was picky. And I don't think that was a bad choice on my part.

"Shared faith" was on the top of the list of qualities I was looking for in a future husband. Being in youth ministry for ten years, I had a type in mind. Someone who played guitar and led songs around the campfire. Someone who liked speaking and teaching. Someone who loved going on mission trips. Someone who maybe got a little overly competitive during games. Basically a male version of me.

Kevin's not exactly what I pictured. Half the time when I look at him during church, his mouth isn't even moving during the songs; he's lost in his own thoughts. He gets really nervous when he has to speak in front of people, but he's taught our little guy to hold hands and pray before we eat. He's not a wild and crazy youth ministry kind of Christian. He's a quiet, deep, introspective Christian. Not the male version of me at all.

Have you ever met someone who reads C.S. Lewis, Dallas Willard, and G.K. Chesterton for fun? I hadn't either. And while some guys look forward to their mailman bringing the latest issue of Sports Illustrated or Popular Mechanics, my guy looks like a kid on Christmas morning when his monthly theological journal arrives in the mail. An uncle picked up an issue from an end table a few years ago on Easter, flipped through it, and remarked, "There's no pictures in this magazine." Nope. Just text and text and text about the church and the world and what it means to be a Christian today. Not really what I was picturing when I prayed for a guy who shared my faith.

But as we walk this journey with Maren, I am so, so thankful for Kevin. His house is built on a rock. I'm not saying my house is built on sand, but some days when the storm is really thrashing, my house seems more like the houses I used to build in Mexico with the youth group: they serve the purpose, but probably wouldn't pass inspections in the U.S. It's reassuring to be able to run next door to Kevin's up-to-code, not-constructed-by-teenagers house. He's a good neighbor on this rock.

The other night I had to go to the bathroom at 3:30 in the morning -- the plague of pregnant women. I couldn't get back to sleep when I returned to bed. I checked email and Facebook on my phone for a while, then tried to fall asleep again. It wasn't happening. I started thinking about Maren, and what we'll have to face soon. I started crying . . . quietly, I thought, but Kevin heard me and wrapped me up in his arms. He didn't say anything or make me say anything, just stroked my hair and rubbed my back while my silent cries turned into sobs and then quieted down again. My thoughts changed from being devastated about Maren to being so, so thankful that God brought Kevin and I together. I don't know how I would get through this without him. I was right to be picky.

James

I turned to Kevin last night and said, "Have I thanked you lately for giving me this beautiful boy?" James lights up our lives. His little personality gets bigger every day, and it's hard to remember what life was like before him. I can't imagine the shape I'd be in right now if not for him brightening my days.

Someone this weekend said, "I can't believe how positive you are through all this." My first reaction was to twist up my face and say, "What? You obviously don't see me during the rough times." Instead I patted James's head and said, "Well, I've got to keep going for this little guy."

When I miscarried Sam, all I wanted to do was lay in bed and cry. Kevin had just left for a six-week Asian recruiting tour, and I knew it wasn't healthy for me to be alone. I called my parents and they drove five hours to be with me. They couldn't do anything to bring our baby back -- if I remember correctly they cleaned my bathroom, cooked a lot of food, and spent a lot of time being bored -- but the fact that they were there meant I had to get out of bed and talk to them, which was good.

If I didn't have James to chase and tickle and read to and keep alive, it would be tempting to slip into a pretty dark place. Instead, I'm more thankful than ever that we have him to fill our days. Knowing we are going to lose Maren, I can't imagine how I'd get through this without James.

I've worried a lot about him through this process, though. When we first found out at just twelve weeks that there was potentially a problem, I wondered if he would someday resent his sister. I knew he would love her, but he might miss out on things because of her. My 30's were amazing, traveling to several countries and all over the U.S. It was pretty much the time of my life. Being an older mother, though, there was a good chance James would have to take over as primary caregiver in his 30's. He wouldn't have the freedom that I did. Or if he married young and had kids already, he'd have added stress, having to take care of his sister. I didn't want him to be bitter.

When we got the Trisomy 13 diagnosis, my worries changed from him having to take care of his sister someday to him living his whole life as an only child. I have fantastic childhood memories that revolve around my siblings. Even today, we still get together every other month or so just to spend time together. My family was the big reason I wanted to move back to Iowa. What will James's childhood be like, growing up without a sibling? When Kevin and I are gone someday, who will James celebrate Christmas with? I feel bad not giving him what was and is so important to me.

I worry, too, that I'll be overprotective. I used to go in and check on James after he fell asleep and ask God to keep all bad people away from him so he'd never be hurt. After finding out Maren won't live, my prayer changed to, "Please, God, don't let anything happen to him because I will die." That's a lot of pressure on a kid. I fear I'll freak out when he wants to learn how to ride a bike. When he gets his license at 16? I'm not going to want him to go anywhere. And college? Hooboy. I'll be pushing for community college and living in my house 'til he's 40. As the months have gone on, I've changed my prayer again: "Dear God, please keep James safe. Don't let anything happen to him. And don't let me become neurotically overprotective so he doesn't become neurotic, too."

I know in the end it will all work out. Life isn't working out the way I planned, but that doesn't mean it can't be good. James will be okay. Maybe a little overly coddled . . . and over-protected . . . but hopefully I won't mess him up too badly. He deserves the best for getting me through this.

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.

Choosing Life

We are so thankful for all the support we've received from family and friends. To know so many of you are praying for us makes us feel less alone on this journey. We also realize there are people who think we've made the wrong decision but are tactful enough not to tell us that. We appreciate you, too.

I've been pro-life for as long as I can remember. The thing about being pro-life, though, is that you never imagine you might one day have to make a decision about abortion for yourself. In the last few months, though, I've learned that sometimes a woman considering abortion doesn't look like a desperate college girl wanting a quick remedy for her problem; sometimes she looks like a distraught middle-aged woman who's been told her baby is going to die anyway.

I wonder where that euphemism "interrupt the pregnancy" came from. We heard it several times after our first ultrasound. Do they teach it in medical school? Was there a board or a committee that discussed and discarded various options, trying to find a softer way to offer it to parents already in shock from bad news? I'm glad we spoke up early on and said abortion was not an option, because they might have pushed it more after the amniocentesis if we hadn't. Since our diagnosis, we've heard and read stories of other parents with Trisomy 13 babies whose doctors pushed them a lot harder to abort. For those who just want it to be over, I'm sure it's tempting.

I get it. This is easily the hardest thing I've ever lived through, and we're not even to the worst part yet. We found out with over four months left until our due date. That's four more months of carrying a baby you know will die -- four more months of becoming more and more attached with every twist and kick -- four more months of becoming more and more in love with a baby you'll never bring home. I understand why some women don't want that bond getting any stronger; if the baby is going to die anyway, why prolong the pain? It doesn't change what I believe, but I'm a lot more empathetic now. Maybe God will be able to use that someday.

From my point of view, here's what it came down to: this is my daughter. I started loving her the minute I saw the positive sign on the home pregnancy test. I could no less end her life now than I could end her life at three or seven or nineteen. She is wanted. She is loved. She is my daughter. I couldn't fathom the idea of causing her severe physical pain to lessen my emotional pain. This is the only life she'll ever know. All I want to do is give her a warm, safe place to flip and turn and suck her little thumb. I want her to be free to kick, especially the big ones I feel when she hears her big brother and I singing songs and reading stories. I want her to know love. Nothing but love. She is my daughter. For her, I've chosen life, no matter how short it may be.

Happiness, Jealousy, and Everything in Between

I had a check-up on Wednesday and Maren is doing great. I'm gaining the right amount of weight, she's measuring at the perfect size, and -- best of all -- I got to hear her strong little heartbeat pumping away inside me. Hearing that hearty thump, thump, thump and feeling her mighty kicks every day, it's hard to believe she's not healthy. It makes me thankful for her early diagnosis, because as hard as this long good-bye is, an unexpected, abrupt good-bye would be so much more painful. I can't imagine going through what seemed like a normal pregnancy, buying lots of little pink blankies and clothes, going into labor expecting a healthy little one, and then coming home empty-handed. I think it might kill me.

Standing in line after my appointment, waiting to schedule my next one, two different tiny babies in little pink caps went by me. The first was alongside a dazed-looking teenage girl, being pushed by a what appeared to be her social worker. The second baby's mom had cognitive disabilities. Her elderly parents were pushing her baby for her. My first thought with the second new mom was, "I hope whatever sicko took advantage of a mentally challenged woman is rotting in jail right now," but my second thought was the same as it was when seeing the teen mom. I was tempted both times to grab those new mothers by the arm and say, "Do you want me to take her home? I can give her a really, really good life."

I have several friends who are pregnant right now, and other friends have asked if it crushes me to see their posts on Facebook. My answer is no -- I am SO happy for them because I know they are good mothers. But with strangers? Lots of feelings come up. Jealousy. Anger. "It's not fair!" (Like I deserve better? I don't know what I think fair means.) Most of all I feel concern for those babies. And yes, sadness. Deep, deep sadness that we won't bring home our little girl.

I know in the future we could adopt a baby like one of those little ones I saw this week. We could give a better life to a baby who needs good parents. We might think about that in the future, but right now we need to make it through this. I can't save every baby in the world. I can't even save the one I'm carrying. All I can do is keep her warm, sing to her, and pray for that tiny heart to keep thumping. For now, it's enough.

The Diagnosis

It's been a rough couple of weeks, trying to make plans in preparation for Maren's birth and death. Someone asked why I'm not more positive -- don't I believe that God can work a miracle? Of course I do, but I also believe God has gifted doctors and researchers with the ability to create accurate medical tests. The University of Iowa's test results match the results from the Mayo Clinic, where they sent Maren's amniotic fluid for a second opinion. I'm pretty confident in their diagnosis of Trisomy 13, and Trisomy 13 is not a diagnosis that leaves much room for hope.

The doctors thought something was wrong from our very first appointment. I don't know if it's because I'm forty or if this is just how they do it now, but we had our first ultrasound at twelve weeks, before we even met the OB or heard a heartbeat. When we saw those little arms and legs moving, we were so excited. I think most women who've miscarried feel the same way when they get pregnant again -- a mixture of elation and terror. Seeing our baby alive and well was so reassuring . . . until the ultrasound technician said she needed to step out for a moment to get a doctor. I waited until she quietly closed the door behind her to tell Kevin, "They only bring in a doctor if something is wrong."

A high-risk doctor came in soon after and said the baby's nuchal translucency measurement (the back of the neck) was thicker than it should be. This indicates higher chances of a heart defect or a  chromosomal condition like Down Syndrome. In the span of about three minutes, she used the phrase "interrupt the pregnancy" five times. I finally said, "Abortion is not an option." What I wanted to say but held back was, "If I hear that stupid euphemism for abortion one more time, I'm going to slap you." We declined her offers of tests that would tell us for sure; we didn't feel that the higher risk of miscarriage was worth it. This was our baby and we wanted him or her, even if he or she had a "defect."

I had a good, long cry when we got home. It's a bit of a shock to hear something's wrong with your baby. After a while, though, I felt a peace about the whole situation. I thought about James and how much happiness he brings us. I thought about how much he makes us laugh and how smart he is. I knew that his brother or sister would be like him, even if he or she had Down Syndrome or a heart defect. These were things we could deal with. This would be our daughter or son. All I wanted was for this baby to LIVE. After losing our first baby, I couldn't imagine losing another.

Kevin and I talked more about the possibilities over the next few days. We live in Iowa City, home of one of the best children's hospitals in our state. A heart defect could be operated on. He wouldn't be able to play football someday like his dad would want him to, but he'd happily run around our backyard. Children with Down Syndrome are still beautiful and sweet. She wouldn't be the most popular girl in school, but she'd charm everyone who'd love her. We didn't care what was "wrong" -- we loved our baby already. And besides, how much could doctors tell from pictures taken through layers of my body at twelve weeks of life? As we shared our fears over the next several weeks, we heard several stories from friends or friends of friends about their babies who were predicted to have all kinds of problems that turned out to be nothing. We trusted God and tried not to worry.

Our next ultrasound was at eighteen weeks. Kevin asked the technician right away if she could tell the sex of the baby. She unenthusiastically replied, "Looks like a little girl." With James, we hadn't found out, so this was our first time hearing a gender reveal; I thought they would make it a little more exiting. I didn't realize until later that her lack of enthusiasm was because she and the rest of the medical staff were full of doubt about the baby's chances of survival. The next thing she said was, "Looks like she has a cleft lip." After the initial shock, I actually turned to Kevin, smiled and said, "They can fix that!" I felt like laughing! Here I'd spent six weeks worrying about nothing! Yes, it would be hard to watch our baby suffer through surgeries, but compared to a heart defect or a chromosomal abnormality, this was nothing! I felt such relief! The ultrasound took forever. With James, we'd always been in and out very quickly, but now the technician took picture after picture from every imaginable angle. I tried not to worry too much. I wasn't surprised this time when she said she needed to go get a doctor.

The same high-risk doctor came in . . . along with three others. She started with the cleft lip findings, but she wasn't as optimistic as I was. She said alone, it's not much to worry about, but the ultrasound showed two other concerning issues: her brain wasn't developing as fast as the rest of her, and her umbilical cord only had two blood vessels instead of three. That combination of problems strongly indicated a chromosomal issue. She didn't mention "interrupting the pregnancy" again, but she strongly suggested we get the amniocentesis we had refused earlier. She said it would be helpful in making decisions about our baby's life, which might be very short. She also mentioned we may need to think about whose life was more important, mine or the baby's.

Kevin said we didn't want the amnio; we wanted our baby no matter what. I interpreted what she was saying, though, and said we should; if I were only going to have a short amount of time with my baby when she was born, I needed to know that. I needed a photographer there to get the only pictures we'd ever have of our little girl. Grandparents needed to be ready to get there fast. I needed to mentally and emotionally prepare for death along with life.

The amniocentesis was a few days later on a Tuesday. They said we would get initial results in forty-eight hours or so. Waiting for the results was the worst. I didn't want to get the phone call while I was working, but I was desperate to hear whether or not something was wrong with our baby. We prayed and prayed for Down Syndrome. Of the options, it seemed best. A baby with Down Syndrome would be a living, breathing child we could take home and love. The other options gave less hope. I skimmed over the information about Trisomy 18 and Trisomy 13. They were so rare -- the chances of our baby having one of those abnormalities was so small, it didn't even seem worth dwelling on. Down Syndrome or just a scare -- those were the two possibilities I focused on.

I still hadn't heard from the hospital after school was over on Friday, and I couldn't imagine worrying through the weekend. I called them and left a message to please call me as soon as possible, then went to pick up James. The phone rang as I was driving, and I quickly pulled over onto a side street. The genetic counselor asked if I was in a good place to talk, then cut to the chase: Trisomy 13. "That's the fatal one, isn't it?" I choked out. She said, "It's not compatible with life." She said 50% of babies with Trisomy 13 are stillborn. Those who live only survive a few hours or days after birth. 10% make it to one year. She said someone from the palliative care team would come to our next appointment to help us.

I hung up and sobbed, sitting there in my car on some side street between my school and James's babysitter. I texted Kevin and told him I was coming to get him, then tearfully drove over to his work. The phone rang as I was driving and the caller ID showed it was the hospital. A surge of hope ran through me -- they gave me the wrong results! They're calling back to apologize and tell me everything is fine! Except they weren't. It was the OB, calling to give me her cell number and letting me know I could call her if I had questions over the weekend. I cursed myself for being so optimistic. Pulling up in front of Kevin's office, he quickly jumped in and I choked out the news. We just sat there, crying and holding each other for a while, then drove home. We sat in the darkening living room and cried some more. What else could we do?

That was December 11th. We've had about a month for reality to sink in. Some days it's still so hard to believe. She is so active and kicks like a little soccer player in training. I can't help but think this is her special gift to me, making herself known so often throughout the day. I try not to think that she may one day stop kicking. We are praying for a live birth and a few hours with her . . . to see her blink and hear her coo and feel her fingers wrap around ours. I know there are no guarantees, and I'm not trying to cut any bargains. That is my hope. That is the miracle I'm asking God for. Not a long, healthy, normal life for my little girl, but just for a few hours with her. That alone would be a miracle for us.

This song both makes me cry and gives me comfort. I'm so happy I'm carrying Maren. I love her a little more each day. Please pray with us that we'll get a few hours with her before she goes back to her Father's arms.