Gracie's Party

It's hard to believe that it has been a week since we laid our Gracie to rest. "Hard to believe" mostly because my sense of time has become so warped over the past week and a half... I don't know whether I feel as though it has been a longer or a shorter time. Part of me feels like it was just yesterday that I was still pregnant with my wiggly little girl, but part of me feels like I've been missing her for decades.

As we drove to the cemetery that day, about a 40 minute drive for us, the rain kept threatening. The day before when we had visited the cemetery to sign paperwork, the weather had been picture-perfect, but I suppose I can't blame the sun for not being able to shine that day. As my sister-in-law said, "It's ok, God is just crying with us." Fortunately when it did begin to rain at the cemetery, it only lasted right up until the service began. We all got a little wet, but it stayed dry for the remainder.

I went over to the site to help set up a few things, making sure that the music was set and the photos were displayed nicely. We greeted a few of our guests as they arrived, but not all. I just couldn't start down that road (with the emotional hugs and condolences) before the service even started. As much as I wanted to feel the emotions of the day, I also wanted to be able to stand up with my husband and read what we had written for her. When the time came, Scott, Ben, Eli and I walked back across the lawn to the hearse that held her casket. The flowers were so beautiful - it was the first I'd seen them. Ben picked her up, turned back to the crowd that waited by her final resting place, and we walked together. Ben carried Gracie, and I carried Eli behind them. It was the last thing we'd do together as a family.

The service was lovely. I remember that much of the message surrounded hope and love and remembrance, though I couldn't tell you a whole lot of specifics. I wish I could say more, but I was far too distracted by the casket sitting on the table in front of me, holding my tiny sleeping baby girl, who I'd never hold again on this earth. I also had my hands full with Eli, who was only temporarily content to sit in my lap and listen. My poor little guy... I know he could sense that there was something very foreign going on. So many people he recognized, but so many he didn't. No one was playing with him or talking to him. People were crying. I'm sure that he was terribly confused! He just acted strange, doing things he never does, making weird noises, eventually acting up a little and forcing me to call a brief "intermission" to talk to him. But it was fine... I couldn't have expected much else. At the end of the day it was our event, so it didn't matter if it was our toddler who interrupted it! He needed to be there, and we needed him to be there.

I do remember that so much of what I heard was exactly what I wanted to communicate to people about this journey that we're on. That the experience is awful and sad and heart-wrenching, but that her life was such a blessing to us, and that God has never forsaken us, and that her story is one of life and hope. Pastor Gerri and Jennifer did a beautiful job of conveying the message that we wanted her life to leave behind.

My best friend Colette read a poem for us toward the end of the service, entitled "Precious Little One". And bless her heart, she made it through without a tear!

I’m just a precious little one who
didn't make it there.
I went straight to be with God,
but I’m waiting for you here.

Many dwelling here where I live
waited years to enter in.
Struggled through a world of sorrow,
a world marred with pain and sin.

Thank you for the life you gave me,
it was brief but don’t complain.
I have all Heaven’s Glory,
suffered none of earth’s great pain.

Thank you for the name you gave me.
I’d have loved to bring it fame.
But if I’d lingered in earth’s shadows,
I would have suffered just the same.

So sweet family - don’t you sorrow.
Wipe those tears and chase the gloom.
I went straight to God's arms
from my loving Mother’s womb. 

-Author Unknown

I really do take great comfort in those words. As awful as this world can be, I still selfishly wish that I could have kept her here, but it is true that she has essentially gotten a free pass to skip over this world's ugliness. She received the gift of eternal life in paradise without ever having to face the pain of this life on earth. I miss her so much, but I find some peace in that truth.

Then it was time for Ben and I to read the words we had written for our girl. Eli joined us, as he was feeling a little clingy at that point, so I held him while we alternated, each reading a paragraph:

"There is so much that we wish we could put into words for you all. Our experience of Gracie’s life was so full of love and joy, despite the pain and heartbreak that came along the way. Learning of her diagnosis and losing the future that we had envisioned for her and our family was an unthinkable loss, but we quickly realized that losing her future did not mean that we had lost her – not yet. There was still time to continue to build our bond with her, make memories with her, and enjoy a different kind of relationship with our daughter – the only kind that we would be able to have. It wasn’t what we had envisioned, but it was all we had, and the choice to make the most of her little life, however brief, was the easiest choice we’ve ever made.  

We spent the last four weeks and five days of her life cherishing every beat of her heart. We listened to her heartbeat and her movements in bed at night with our fetal Doppler, laughing at the party she always seemed to be having in there. Eli often asked to “talk to Gracie” on weekend mornings, and we’d happily oblige by placing the Doppler probe on Jenna’s belly and letting him listen with wonder at the sounds his baby sister was making. It wasn’t long after the diagnosis that Jenna began to feel her movements regularly, another precious bond that formed in those weeks. On Fathers’ Day, just 3 days before Gracie would ultimately pass away, I was finally able to feel her kick for the first time. Like any other expectant couple, these milestones and tender moments were treasured, but I would venture to say that our situation inspired even deeper meaning and intimacy in those moments. Not a moment was taken for granted. Every day was a gift.

On the day that Gracie was born into Heaven, we experienced the deepest of pain and sorrow. Yet at the same time, it was another opportunity to make memories with our girl. She entered our world so peacefully, we held her together immediately following delivery and she remained in our care for over 16 precious hours. We snuggled her, kissed her, took in every inch of her form, marveled at her perfect little nose and tiny baby feet. We bathed her, dressed her, made impressions of her hands and feet, created a Christmas ornament with her hand and footprints, shared her with loving family and friends, introduced her to her proud and excited big brother who so lovingly accepted her into his arms. We took photos with her. We made memories and treasured our time together. 

As much as Gracie’s passing has broken our hearts, and as helplessly empty as our arms feel today, her life was such a precious gift. She taught us a new way to love a child, and each other. She gave us a whole new outlook on life. Her life and death brought us new friendships, strengthened old ones, and added new layers to the depth of love that exists within our family. Gracie is proof that there is such tremendous beauty to be found in every life, no matter how brief."

I wouldn't say that we made it through without tears, but we came pretty darn close. God's strength and peace comes in waves at the exact moments we need it most, and it came on like a Tsunami as we read. My voice shook and my eyes welled occasionally, but I did far better than I had hoped was possible. Once again, I will never stop thanking Ben for pushing me to be courageous for our daughter throughout this process. I'm so proud that we were able to do that for her.

After allowing several friends and family members to stand and share a few words with the group, we handed out pens and small tags. Everyone in attendance was asked to write a short note to attach to a balloon that would be sent up to Gracie in our closing balloon release. This was when I lost it for a few moments. I just couldn't write to her without crying. But once again, I told her how desperately we would always miss her, how we would hold her in our hearts forever, and asked her to watch over her brother for us. When everyone was ready, we turned on her song:

  

...And on the count of three...

...We sent our love up to Gracie.

Even Eli was able to release his balloon without losing his mind :)

Then Ben and I finally fell to pieces. It was just so intensely emotional. We had been so strong through the entire service, but that beautiful expression of love and hope-filled reminder of her place in Heaven was just too much. We'll never forget it. We stood there holding each other and sobbing, and soon felt the arms of our family all around us as her song played and her balloons floated away. It was a perfect ending to a lovely celebration of her life.

We spent some time greeting, hugging and thanking our many guests, especially those who weren't able to join us at the wake afterward. There were roughly 45 people who came to honor her and support us, and we'll never forget a single one of them. But soon it was time to send everyone on their way so that Ben and I could do one last thing for her - lay her to rest.

Ben carried her casket to the graveside and we sat together and said what we needed to say to her. We laid so many kisses on that casket and thoroughly soaked it with our tears. Though there had been some miscommunication regarding who would be placing the casket in its final resting place, when the time came, the cemetery's superintendent was more than happy to let Ben do whatever he felt he needed to do. And what he needed to do was make sure that it was her daddy who put her to bed for the first and last time. That we were the last to touch her. And so my husband - the bereaved father of his first baby girl, dressed in his best suit, red eyes full of tears - climbed down into the 4-foot-deep grave, picked up the casket, and gently placed our little girl in her final resting place. Scott picked three roses from her casket spray - one from Ben, one from me, and one from Eli - and handed them to Ben to place on top. He climbed out, and we told her we'd see her again - that this was not "goodbye", that we'd never say "goodbye" to her - and we left.

We cried as we walked away, but we just kept repeating "It's only her body. It's only her body." Because really, it's only her body that is buried there. Her sweet and lovely little soul - what made Gracie "Gracie" - left us before she even made it into our arms. For the entire time we've known her body, her soul has been with Jesus. She has a new and perfect body - she has no use for the terminally flawed one that she inhabited on this earth in my womb. That body was all my arms ever knew, and I miss it every day, but I need not be distressed over the fact that her body had to be buried. She's not there, in the ground. I will visit that spot to remember her and feel close to her, but as I sit by her grave and talk to her I'll have to look up - not down.

Thoughts

I know I said I'd pick up with a recap of Gracie's funeral service for all of those who were there with us in spirit but unable to attend. There are other things weighing on my heart today, though, so we'll have a brief interlude before I get to that post.

*sigh*

This week has been so interesting. It's strange to be on the other side of it all. We were living in this awful limbo before we lost her, knowing what was to come, but not knowing how or when. Now it has all happened, and it's over, and she's really gone. Now what? There's no "getting back to normal". I don't even know what "normal" is supposed to be. We have been forever changed - we're just not the same people we were - so rather than "return" to some state that once felt "normal" before, we're left to move forward into something new. A new life as new people. We'll have the same jobs, the same house, the same routines, but who we are and the way we will live and the perspective through which we will now view the world will make all of that "same" stuff feel different.

It's an uncomfortable sort of feeling, knowing that nothing will ever be the same. Part of me wants to return to some comfy, cozy place in my mind that feels familiar, but most of me wants to be changed. I don't want our world to return to the way it was before Gracie, as if she never existed, and as if we had never been through this life-changing experience that grew our hearts and our faith so profoundly. We are snuggling Eli closer, rocking him longer before bed, taking more photos, and cherishing more moments. We are holding each other tighter, being more affectionate, sitting closer together on the couch, feeling a more intense need to be in each others' presence. Everything is amplified, which unfortunately includes the sadness and the longing for our little girl, but on the positive side it has drawn all three of us closer to one another in so many ways, and it feels really good.

As time marches on, certain things are beginning to return to normal. My body, for one thing, is approaching a more normal state. No more heartburn, no more swollen ankles, no more headaches. No more tight wedding rings. No more painful engorgement, as my milk surge recedes. No more 23-week pregnant belly, just some extra postpartum flab left behind. I notice more and more each day how quickly my body is snapping back to what it was before Gracie... and I truly hate it. I don't exactly want to continue to look pregnant. I don't like heartburn or cankles. I didn't enjoy being so uncomfortably engorged for days, wearing frozen cabbage leaves and ice packs around the house. But all of those little things were the remaining evidence of her - that my baby girl had been growing inside my belly, that she was real and alive. As it all slips away, I feel as if I'm losing my grip on some piece of her.

I know that as time heals us, it will also allow her memory to fade a little, to feel more distant. My second born, my first little girl, my daughter Grace Adalyn will never ever be forgotten in this home, but I know how memories work. We will do all we can to keep her memory alive, to commemorate her life, to reflect on the ways she blessed us, to remind her siblings of her place in our family, but I know that I won't always feel her the way I feel her now. The freshness of the loss, the sharpness of the pain, the strength of the ache in my heart will all dull with time. That's probably the only way we could continue to move forward with our lives, but part of me just wants to stay right here where I can still clearly remember what her body felt like in my arms, the way this loss feels deep in my chest, how cool her cheeks felt on my lips. I don't want any of those sensations to fade. Maybe they have to, as part of this healing process, in order to curb the pain. And maybe at some point I'll feel ready for that - ready to let go of the pain and allow it to fade. But right now I just want to feel all of it, because it's all I have left of her inside of me. I have photos and keepsakes and the memories of family and friends who came alongside us in this process, but the only way I can really feel her anymore is to feel the pain left behind. Fortunately she also left behind  many blessings to be felt - the closeness we're now feeling in our little family unit, the warmth of our friends and family who have surrounded us with love and prayers and encouragement, the outpouring of support from strangers and distant acquaintances, the reminders of how her story has touched lives.

What it all adds up to, though, is a whole lot of intense emotion. Both the blessings and the pain are enough to bring a person to their knees. It makes for a whole lot of tears, but they're not all bad. As I've said several times already, even the tears of heartache are welcome, in my mind. I feel an intense need to feel all of it. For now, it's my way of clinging to her and honoring her and loving her. It's my experience of mothering her. As much as I wish I could have felt the joy of mothering her for a lifetime on this earth, if I can't have that, then I'll make the most of what experience I can have, and I'll savor it.

Our Last Visit

Despite all of the pre-planning we had tried to do in advance of Gracie's passing, there was still much to be done in the days between her birth and her funeral service. We left the hospital almost immediately after she was taken to the funeral home - we didn't want to be in that room another second once she was gone. We took some time to gain our composure, and then we were outta there. We slept like ROCKS that night.

The next day (Thursday), we met with the family ministries pastor and the childrens' ministry director from our church who were teaming up to officiate Gracie's funeral service. They came and met us in our home and we spent about an hour and a half talking, crying, laughing, and hashing out a master plan to honor our sweet girl's life. We had been scheduled to meet with the pastoral care director that following Sunday to do some funeral pre-planning, but obviously we needed to meet sooner and he was on vacation with his family. I think it worked out perfectly that the people who ended up officiating the ceremony were both women, both moms. I think we really benefited from having a "mother's touch" in all of this. In the conversations I'd had on the phone with the pastoral care guy, I really didn't feel a connection - it was sort of awkward. I think it worked out as it was supposed to :)

That evening, Ben was feeling very unsettled about what was going on with Gracie, whether she had been disturbed at all, who would be placing her in her casket and how we'd know for sure that she was laid in there the way we wanted her to be, snuggled and comfortable. I shot an e-mail to our incredible funeral director who called Ben from home on his own time to discuss all of this with him. The end result was that we decided to make a visit to the funeral home the next day. We had decided long before she passed away that we didn't want to see her body after the hospital. We weren't having her embalmed, and we didn't want to have any disturbing final images of her in our minds, so we had decided we wouldn't go to the funeral home at all. Scott did say that he would not advise us to view her again, but he wouldn't ever tell us "no" either - that it was up to us and what we felt we needed to do. We still didn't want to see her body again, necessarily, but when the time came Ben felt strongly that as her father, he needed to go and make sure she was ok. He needed to be there when the casket was sealed. I wasn't sure whether I'd go in with him or not, but our brother-in-law volunteered to go along and be there for him. He would be the one to uncover her and check that her hat was on straight and her necklace was in place and everything was as it should be, so that Ben could be there and be sure of all of that without having to be burdened with any images of her that he didn't want to remember. This is by far the most special and intimate gift that anyone will ever give to us in this life... I will never stop thanking Josh for what he did for us that day. More on that later.

Knowing that we would be going to the funeral home the next day gave us the opportunity to add a few items to her casket, so we decided to print a photo of our family of four to be placed with her, and that we would each write her a letter. We put Eli to bed and sat at the dining room table with a box of tissues between us and two glasses of wine, and began to write. It was so hard to fit all that I wanted to tell her onto one sheet of lavender cardstock, but somehow I managed. I told her how loved she was, how much she would be missed, how badly I wished for more time with her, how badly I wished that things had ended differently, and I thanked her for all that she gave to us in her short time. And of course I cried a good bit. I just kept thinking how awful it was that I was writing this letter to be placed in her casket. How unfair it was that I couldn't keep her, and that I had to tell her all of this in a letter that she'd never actually get to read.  Ben's letter was so beautiful... I have just been so blown away by him lately. His caring and protective love for our daughter is just awe-inspiring. But I digress... I plan to write an entire separate post about my incredible husband, so for now I'll move on.

The next morning (Friday), we had to go to the cemetery to sign some paperwork and select a headstone. My great grandparents were also buried at this cemetery, along with my infant aunt who passed away of SIDS at 9 months old, and there was one extra plot there that had been paid for in full and that no one was planning to use. My grandfather and great aunt were kind enough to gift this plot to us, so that Gracie would be buried with family and our costs would be dramatically reduced. We signed a bunch of papers - it almost felt like we were buying a car - and then hemmed and hawed over the headstone for a while until we settled on one. I had no idea how expensive those things are, by the way. Wow.

Next we headed to the funeral home where we'd be meeting Josh and our funeral director, Scott. I still wasn't sure that I wanted to go in... I wasn't sure that I wanted to be so close to her but unable to see her. Ultimately I decided that I'd at least go in and try to be there for my husband in whatever way I could, even if I wasn't going into the room where they'd be "doing" this. Scott went over a few funeral details with us and we discussed what we were about to do. He assured us that no one had touched her, and that she was exactly as we had left her. I don't know why it never occurred to me before this point, but Scott suggested that since we had wrapped her in such a big, fluffy blanket, there was plenty of extra to cover her. We could just keep her wrapped up with her face covered and we'd be able to hold her one last time without actually seeing her. A wave of relief came over me... I was going to get to hold my sweet girl one more time. I had no idea how much that meant to me until I was there that day.

Scott and Josh stepped out to go and prepare Gracie, and Josh then took us across the hall into what felt like a family room, warmly lit and nicely decorated, with couches at one end and a small table at the other which held her casket. And there was Scott, standing there cradling our baby in his arms, all wrapped in her fuzzy white blanket. She wasn't laid on a table like some kind of corpse - he was just smiling and holding her, like you'd do with any other baby. I'll never forget that image and how much that small gesture meant to me. He placed her gently in my arms, and my heart literally swelled in my chest. I hugged her so tightly, kissed the top of her hat that was just barely visible (about a million times, I think), and just held her for a few minutes. Feeling her weight in my arms again was exactly what I needed. Just one more snuggle. I'll always need "just one more snuggle", but what a gift it was. Ben held us both and we cried together, but we were mostly just happy - so happy to be together again. I handed her over to Ben so that he could have a few minutes with her as well. He whispered to her, hugged her tight, kissed her over and over, and when it was time, he laid her in her casket. He was SO relieved to have been able to be the one to do that. We carefully arranged the items that we had brought to place in her casket, including one of Eli's old loveys, a soft giraffe that we placed alongside her. When we were satisfied and had given her one last kiss each and whispered "sleep tight", we retreated to the other end of the room to sit on the couch and be there while Josh did his final "check" of her and helped Scott to seal the casket.

I can't tell you what it meant to us to be there for that - to place her in her final resting place, arrange her and her belongings just so, and know that she was snuggled comfortably before it was sealed. We'll never have questions or doubts. We know, because we were there. It may seem somewhat morbid to people outside of the situation, but we just had to be there. Honestly, it was Ben who had to be there. I didn't realize what it would mean to me until I was there, participating. I'll be forever grateful to my husband for his commitment to our daughter, which is what ultimately pushed me to be there for her too, when I wasn't sure that I could be. He was so strong for our baby girl, for our family. We left the funeral home that day feeling such peace. I am so grateful for Scott, who never once balked at a single request we made - he was just there to facilitate whatever we felt we needed to do, and he is a big part of the reason we were able to feel so peaceful throughout this process. He was there to fight for us when the cemetery tried to tell Ben that he couldn't lower her into her grave ("liability issues", they said). He was a godsend, is all I can say. We will forever highly recommend Ruck Funeral Home.

That evening, my mother-in-law, sister-in-law and niece brought us dinner and helped us to put together a few last-minute items for the funeral, including some beautiful 16x20 portraits for display. We put music onto the ipod for the service. At the very last minute, I texted my best childhood friend who graciously agreed to read a poem for us at the funeral. Just before bed, we sat down and wrote a eulogy together for our girl, that we would read the next morning. Once again I didn't think that I would be able to do it, but my husband insisted that we could do it together - we would trade off, take deep breaths, do whatever we had to do, but we would be the ones to tell her story. Once again, I'll never stop thanking him for pushing me to be brave for our baby girl. I can look back on all of it without a regret, thanks to him.

I'll leave you with the images that would be displayed the next day at Gracie's beautiful funeral service, and in my next post we'll pick up with a recap of the service, hopefully to include a video of the balloon release!

Photo courtesy of Roberts Photographers

Photo courtesy of Ellen Cohn Photography for Now I Lay Me Down To Sleep

Our Time With Gracie

*****

I'd just like to warn you as the reader that there are photos of our angel in this post. I understand that some may be more sensitive than others to these images, so if you feel that you may have trouble with them, please scroll no further. We are so proud of our beautiful daughter and want to share her with the world, and we feel that this blog is our space to do that. But the reality is that she was a very tiny baby who had passed away in utero, and that is a disturbing reality - no question. We understand that not everyone will feel comfortable confronting that.  

 *****

Gracie was born at 1:20am. We released her to the funeral home around 5:30pm. We spent roughly 16 sweet hours with our little girl... 16 hours. Compared to the entire lifetime that we had expected and planned for right up until our dreams were shattered on May 16th, 2014, 16 hours is a cruel joke. And she wasn't alive for a moment of them. I have plenty of reasons to feel bitter and angry at what death stole from us that day, but I find it far more healing and peaceful to simply be thankful for what God gave to us that day.

Not a moment of those 16 hours was wasted. I could have had a difficult or emergent delivery, been in severe pain or incapacitated or unconscious, have been forced to go to the operating room (which was on the table at one point, as the stubborn placenta was refusing to detach for a while there)... but none of that happened. God gifted us with a peaceful and uncomplicated birth, which allowed us to simply be with her. The time we spent included some precious alone time - just the three of us, as well as time spent with a host of family and friends who came to shower her (and us) with love, a visit with her big brother, a family nap, and some priceless memory-making. We left the hospital that day with no regrets.

First, my mom came in from the waiting room where she had been sleeping, and my dad and stepmom arrived from home. They took turns holding her and marveling at her. My dad took many priceless photos for us, including several of Ben giving Gracie her first and last bath, making footprint and handprint impressions, and making a foot- and handprint ceramic ornament.

As morning broke, more and more visitors arrived. My oldest and dearest childhood friend Colette and her husband came. My sisters-in-law, niece, and mother-in-law arrived shortly thereafter. Everyone held her, snuggled her, kissed her, and loved her. It felt so good to watch others take in the reality of Gracie's form, accept her, and love her. I can only imagine how much easier it would have been for our friends and family to just sort of shield themselves from this awful situation, stay home, and hide from it. It was a painful experience for everyone - we were all sitting around crying together! But they came. They were there for us, and they wanted to know her. They wanted to seize this limited opportunity to make a memory of her. Now they will help us to keep her memory alive, because she lives in their minds as well. That may be the most special gift anyone could have given us that day.

My best friend Tiffany and her husband, Ben's best friend Joe - who had been watching Eli for us - came to snuggle our girl, and brought our son to meet his baby sister. Friends, I cannot describe that moment. Let me start by saying that I was afraid. I was afraid that he might be afraid - that seeing a baby that didn't exactly look like your classical picture of a normal newborn baby might startle him. Ben and I had discussed it and thought it through and we knew that we needed to include Eli in this day and allow him the opportunity meet and hold and love his baby sister, but I was worried. Would he balk? Would he cry? That would have shattered me into a million pieces. But friends, my little boy's sweet, innocent, nonjudgmental little soul immediately opened up and enveloped her. His excitement was palpable as he beamed his most enthusiastic smile and exclaimed "It's GRACIE!" He looked around the room at all of our visitors and just kept repeating "It's Gracie! It's Gracie!" as he scanned from person to person, as if to proudly introduce each of them to his sister. It was like he was trying to say to each and every one of them, "Oh my gosh, have you seen her? It's my sister! She's here! LOOK!!!"

I didn't know that I could love my son more than I already did, but watching him accept his little sister with such unbridled love and enthusiasm just made my heart soar. I will be forever grateful to him for giving us these precious memories.

Eventually our guests began to trickle out, and at 2:00 we still hadn't eaten lunch, so we ate and then sort of collapsed. We had been awake for at least 30 hours at that point, and we were truly exhausted. I had been resisting sleep because I didn't want to "waste" a moment with her, but Ben climbed into bed with me and I snuggled her in between us, and the three of us took a nice little family nap for about an hour. It wasn't a waste. It was another thing that we'd never have gotten to do with her otherwise that we got to do that day. Of course I didn't sleep soundly, and I woke up frequently and peeked at her, but it was truly lovely.

The Now I Lay Me Down To Sleep photographer came and did a bunch of photos for us, which I can't wait to share with you all once they're available. I think they're going to be just beautiful. But by that time, Gracie's fragile little body had already begun to change so much. Her color was darkening, her skin was becoming less sturdy, and we knew that the time to say goodbye was drawing near. We had to strike a balance between spending every possible moment with our girl, and making sure that we didn't wait so long that our visual memories of her would become upsetting ones. When the photographer left, we had our nurse call the funeral home. That started the clock ticking. We had about 40 minutes left with our girl.

We held her so tight. Kissed her little cheeks and nose as many times as we could. Spent time just feeling her weight in our arms. We took off the hat that she had been wearing (for us to keep) and replaced it with an identical one to be buried in, and made sure it looked perfect. We unwrapped her from the blanket she'd been in all day (again, for us to keep) and wrapped her in the soft, fluffy white blanket that we had bought for her final rest. We placed her necklace around her neck and arranged it just so. Then we just cried and held each other as we held her. When they came for her, we cried harder over her as I gave her my last few kisses, whispered how I loved her and would miss her every moment of the rest of my life, squeezed her tight, and then gave her to my husband. He did the same, showering her with kisses and whispers of his love, and then he did the hardest thing he will ever do - he placed her in the funeral director's arms and let her go.We watched him walk out of the room. We collapsed onto the bed, curled around each other, and we sobbed and shook and wailed for our precious little girl.

Our Birth Story

Two and a half years ago, I wrote a post about Eli's birth. I called it "Our (Horrific) Birth Story". It was a rough birthing experience, for sure, but one would reasonably assume that in comparison to a stillbirth, "horrific" might be an overstatement. After all, two and a half years ago I came home with a healthy, happy baby boy. On June 18th, 2014, I came home empty-handed.

The truth is, though, that Gracie's birth was as perfect as it possibly could have been. The trauma of Eli's birth is still somewhat "horrific" in comparison to the peaceful, gentle way in which my daughter came into the world. Though we reached the utter depths of heartbreak that day, Gracie's birth into Heaven was a beautiful experience that I will treasure for the rest of my days.

It wasn't even an hour after my last post from the hospital that night that Gracie was born. Ben and I had settled in and turned out the lights to get some rest. I had just drifted off to sleep when I suddenly felt my water break and felt something drop into the birth canal, all at once. That sensation was immediately followed by pressure and moderate cramping pain, so I called the nurse in to check things out. Long story short, she was on her way into the world. The physician assistant covering the unit did her best to hold Gracie in place while my OB rushed in for the delivery, but in the meantime, two more contractions delivered her without any conscious assistance from me whatsoever. My doctor didn't even have time to get gloved up before Gracie was born at 1:20am, roughly 7 hours after the start of my induction. My blood pressure behaved throughout the process, with little spikes here and there but no medication requirement. It was truly an "easy delivery".

As soon as the cord was clamped and cut she was in our arms, where she would remain for the next 16 hours. Our nurse confirmed with a gently placed stethoscope that there was no heartbeat, but it was relatively clear from her coloring alone that Gracie had likely passed away during labor. We had not been monitoring her throughout the process, as we knew that she was likely to pass away at some point along the way, and there would obviously be no intervention necessary if that were to occur. I think that hearing her heart stop beating would have been terribly distressing, so I'm thankful that we had no indication of her passing until we were holding her in our arms.

I felt tremendous peace in those first moments with her. I didn't cry, I just took her in. I was simply present in that moment with my husband and our daughter. We kissed her, snuggled her, whispered our love to her, and inspected every last inch of her form. The defects seen on ultrasound were there, surely enough, but her little face was just perfect. She had the most beautifully formed and distinct little nose! She had the tiniest of little baby feet, just the size of the pad of Ben's thumb. Her abnormalities were small and easy to overlook. We just sat and marveled at her. There were stray tears here and there, but heartbreak and sadness were not the overwhelming emotions in those first hours - we felt peaceful, calm, blessed.

We spent 2 1/2 or 3 hours with her alone, just the three of us. That was due in part to that fact that the placenta took nearly two hours to detach, which apparently isn't all that uncommon in a very pre-term deliveries. Our nurse came in every 20 or 30 minutes to check on the progress of the placenta and to bring fresh warm blankets to re-wrap her, in an effort to keep her warm for us. Otherwise we were left alone with our baby to enjoy some quiet time together. The first time I remember crying was when I was left alone with her for a moment - I think Ben had gone to the bathroom or something - and I just cried apologies all over her. I told her how desperately I wanted to keep her, and how sorry I was that our time together had to end this way, and that her sacrifice was so special in that it protected her big brother and her daddy from potentially losing their mommy and wife.

I know that our journey together had to end that day, and I truly believe now in retrospect that it all happened the way it was meant to happen, but I felt such guilt and sadness at having had to instigate this process - the process that took her life. I will always carry some level of guilt. I know that preeclampsia left untreated was just as likely to take her precious life as labor was - she was a fragile flower. The reality that I had to accept was that there was simply no way to change the outcome for Gracie. Whether it happened at 23 weeks and 5 days or at 25 weeks or at 32 weeks or at term, Gracie was never destined for life on this earth, in our arms. Though I wanted to feel like I had control over something in this situation, the reality is that I didn't. There was never anything I could do to keep her with us. I extended her time with us by refusing to end her life prematurely at 19 weeks when we learned of her diagnosis, and I chose to love her and mother her and make the most of our time with her, but that was the extent of my control. I could fool myself into feeling a sense of control by saying that the decision to induce was ultimately up to me, but the decision was made for me, by the disease process happening in my body - I just had to accept the reality of the situation and then do what had to be done. That acceptance did not come easily for either of us. We wept and sobbed over the new reality that we were handed that night, and we talked it over for quite some time with our doctor before we were able to move forward. In many ways it felt like were "making a decision", and at the end of the day - technically speaking - we were, but there was simply no other decision to be made that day. Continuing to try to assign myself some level of "control" in that situation only serves to give credence to the guilt I feel, and I will need to continue to work on letting that go.

The reality is that God was always in control. The preeclampsia was never a surprise to Him. He knew the number of her days before she was conceived. I know that we honored His will for her life by allowing the natural course of our pregnancy to dictate the terms of her life and death. It just hurts. No matter how we lost her, it was always going to be the hardest day of our lives, the deepest heartbreak of our existence.

...............................................................................

In upcoming posts, I will share more about the time we spent with her during those 16 hours, life at home, and our girl's beautiful memorial service.

Our Sweet Gracie Girl

Grace Adalyn Bonner was peacefully born into heaven on June 18th at 1:20am. She weighed 15.6oz and measured 11 inches long. She is perfect and beautiful and so very loved ❤️ Continued prayers are very much appreciated as we spend some time with her and prepare to say goodbye.

The End of the Line

Our journey with our sweet girl has been a beautiful one. It's hard to believe how much she has taught us before even arriving in our arms. As painful as it has been at times, I wouldn't wish it away. I would wish away her triploidy and make her perfectly healthy if I could, but I wouldn't ever wish away her conception or this pregnancy or this experience. I am blessed to know her, to have been her mommy even for a short time. 

Unfortunately, our time with Gracie is growing short. As I type, we are awaiting the start of a pitocin drip to induce labor for preeclampsia. 

Our hearts are heavy and broken. We desperately hoped that it would not end this way. The decision was agonizing and painful, as I knew it would be. It will continue to hurt... I just pray that I'll be able to live with it. We had very strong recommendations from our OB and another high-risk OB. Preeclampsia is just too unpredictable, and too dangerous. We would've had to sign AMA papers to leave this place. I know that it's the right call...It just hurts. It hurts so bad.

I had developed a relatively nasty headache at work today, so I had one of the clinic triage nurses take my blood pressure. She repeated it three times and tried the other arm, but it was undeniably high - 159/109. Upon arrival at the hospital, it was 151/97. It has been up and down ever since, sometimes fine, sometimes high. The one constant has been our little girl, flipping and flopping around in there, a persistent reminder that she is still with us. My God, this hurts. How do I let her go? How is this supposed to work? 

...

Since I began writing I've now had several hours of high-dose pitocin (which, let me assure you, is no joke) and an epidural and am resting comfortably. We've had some time to visit with family, laugh a little and cry a little. I have an incredible nurse who is taking exceptionally good care of me, and my own OB happens to be on all night tonight. All is as well as it can be for the time being. 

We're going to get some rest for now. Goodnight, friends. Please say many extra prayers for us as we set about doing this very hard thing that we just don't know how to do.

What I Wish Everyone Knew

Let me start by saying that most people don't have any reason to know what it's like inside the mind of a parent that is going through something like this. I recognize that, and do my best to always give people the benefit of the doubt. Most people are well-meaning, genuinely concerned and/or just don't know what to say but feel that they need to say something. It's tough, being on the other end of that conversation - not knowing how to react, what to say, or if it's someone you love going through this, not knowing how to help (but desperately wanting to).

I have already learned so much through this experience, and it has generated huge shifts in my perspective. One thing that I'll probably never do again is make the assumption that a pregnant stranger is having a perfectly normal, happy, healthy pregnancy. That's what everyone assumes when they look at me, and it's why they smile and congratulate me, assume that I'd be thrilled to share some of the exciting details (when I'm due, the sex of the baby, if she has any brothers or sisters at home, etc), and make conjectures about my future (how busy I'm going to be, how much life changes with two, how fun little girls are, etc). Generally, it's fine. Most of the time I'm able to smile and nod and go along with it. After all, I'm just answering simple questions. She is a girl. She is due on October 10th. I do have a son at home who is excited about his baby sister. But if these strangers only knew the reality, I know they'd feel awful. I know that the guy on the street the other day who warmly smiled and chuckled in response when I told him it was a girl, and replied "Ohhhh my, try not to spoil her too much - it's hard!" would hate to know that I began to cry as soon as I turned the corner toward the parking garage. I would give just about anything to have the opportunity to spoil her rotten. I know that the OR nurse that was chatting me up about her the other day would feel terrible if she knew just how empty my arms would soon feel, after the entire conversation we had about how full my hands would be with two small children during medical school.

I think I will forever tread more lightly in engaging pregnant strangers in conversations regarding their pregnancies. Even if the baby and mom are healthy, perhaps there are other unfortunate circumstances that make it a less-than-ideal situation, and mom isn't exactly beaming with joy. I'm just realizing how intensely personal these pregnancy-related issues are, and how invasive people's questioning can feel when things aren't going according to plan. Most medical conditions aren't so readily apparent as to attract the attention of strangers, and if they are, most strangers aren't so eager to engage one in conversation about them, yet when it comes to pregnancy everyone wants to chime in. Again, I remind myself that people are just trying to share in my joy and have the best of intentions, but it's still hard.

All that said, if you're not a stranger to the person going through this difficult thing, there are few things that you should keep in mind...

• Odds are, she wants to talk about it. With strangers it's awkward - you don't want to start a 15-minute conversation explaining the details of your situation. But when it comes to the people around you who are aware of what you're going through, it's a completely different ball game. For me, it's a relief to be in the presence of someone who knows, and be able to talk about it if I need to. At the same time, I think that the people around me who know are often afraid to bring it up for fear of upsetting me. Also at the same time, I'm afraid to bring it up too often. I don't want to be that guy. People could do me a great service just by asking how I'm doing with things, and opening the door so that I feel like I can talk about it (and many people do!). If I don't want to talk, I'll give you the short answer, but at least you've given me the opportunity. Let me reassure you, even if I wasn't talking about it or looking sad at the time, you didn't "bring it up" by mentioning it. It's on my mind every moment of every day - you couldn't possibly make me any more aware of it. You aren't going to send me into an emotional fit, you're only going to do me the great favor of giving me an outlet to express some of what's "on my mind" at that moment. I might cry, but that's ok - you didn't do anything wrong. My baby is dying, and I'm just going to cry. Sometimes it feels really good to cry.
• Talking about the baby is wonderful. Along the same lines as the previous bullet point, you're not upsetting me by mentioning my baby or saying her name. Quite the contrary, in fact, you are making my heart smile (even if my stupid eyes are crying). When a woman makes the choice to continue a pregnancy like this, you can know one thing for certain - she values this baby tremendously. She doesn't want to forget that there's a baby in there or pretend that she's not pregnant or avoid the subject. Like any other expectant mother, she loves her baby. Unlike other expectant mothers, though, she isn't sure that other people value her baby. In fact, many people make it relatively clear to her that they don't, based on their comments and confusion regarding the "point" of this "futile" endeavor. Asking about her baby, if she's feeling movement, if there are any updates on the baby's health, how older siblings are interacting with him/her... these are all life-affirming questions and give the mother a sense of normalcy in an otherwise completely foreign situation. And it's not that any of these questions are "fake" or not truly meaningful - you're asking this mother to share aspects of her experience of her baby, in a situation where the pregnancy is likely the only experience she'll ever have of her baby. It's like asking the mother of a 5-month-old whether he/she has rolled over yet. You're taking an interest, and showing this mother that you understand that her baby is real, alive, valuable and important. Oh, and if the baby has a name, don't hesitate to use it! They named him or her for a reason ;-)
• Just don't bring up termination. Don't. A family that has recently received this kind of news is in one of three places. 1) They have decided to terminate. In this case, odds are they'll mention it on their own as they explain the situation and where it's headed. If they don't, it's likely that that's because they don't want to share that information (and so they don't want you to ask). 2) They have decided not to terminate. In this case, odds are that your bringing it up will cut like a hot knife and inspire some seriously negative emotions. To someone who is choosing to continue the pregnancy, that question feels an awful lot like a judgement regarding the value (or lack thereof) that you place on their child's life, and that is not the sentiment you want to convey to the grief-stricken parent of a dying child. Take it from me. 3) They haven't decided. Your bringing it up may feel to them like an affirmation that that's what should happen, what is expected, or what you would do. Do you really want to be a part of their decision-making process? They are also probably experiencing tremendous inner turmoil over the decision, and are therefore a lot less likely to want to talk about it unless you are an extremely close friend or family member. Bottom line: Just don't go there. If they bring it up, great. You'll have your answer.
• Don't talk about miracles or "modern medicine". Everyone wants to hope. It's only natural. And people assume that the possibility of a miracle would be reassuring to a parent in this situation. Even better, if you know someone who knows someone whose baby did ok in a sort of similar situation, you'd think that would be reassuring. But when the child's basic composition is terminally flawed throughout every cell of the body, as Grace's is, there is no "cure" or "fix". Even if we were able to surgically fix every structural defect she has, it wouldn't fix the fact that her entire being is dysfunctional at the cellular level. The fact that a handful of children out of 100 with this condition survive to live birth is somewhat reassuring to me - maybe Gracie will get there - but the fact that one triploid child in the history of the medical literature lived to 10 months old is not. I bet those 10 months were pretty ugly, and it happened once. There are a few others who lived to be a few weeks or months old, but I'm talking literally a handful of kids EVER. And to be honest, I'm not sure that's what I want for my girl. I don't want her to live in the NICU for a few weeks with a bunch of lines and tubes and machines sustaining her, only to pass away in a plastic box. If she is going to live for any period of time out here in the world, I want it to be in the arms of the people who love her, for however long she is able to survive. Our miracle would be a live birth, followed by a peaceful passing in our arms. Or, if it ends up being a stillbirth, our miracle would be a peaceful and smooth delivery that allows us ample time to bond with her. Some who don't quite grasp the definitive nature of this diagnosis might think us callous or unfaithful for thinking this way, but believe me - we're more than willing to accept a true miracle. If God wants to make this all magically go away, I am ALL for it. But if that's His will, He won't need lines and tubes and machines to do it. In the meantime, we are willing to accept that this fate that we're preparing for is His will, and willing to accept that our role in all of this is to love her, care for her, protect her, treat her with respect and dignity, and make the tough choices that parents sometimes have to make for their children. That is what God has called us to.

Again, so much of this comes from the right place. I don't feel that anyone has been intentionally insensitive or hurtful to me throughout this process, and I certainly don't feel angry with anyone who cares about us and has perhaps said the "wrong" thing at some point. No one knows how to address a situation like this - it's so unfamiliar, and it's impossible to know how your questions or comments may be perceived. Just know that no matter what you say or do, if it comes from a place of genuine concern, that will come across. Saying something is always better than saying nothing, which only serves to isolate that grieving person further. When all else fails and you're struggling, remember that it's ok to ask. None of us (including the bereaved parents) know what the hell we're doing in this scenario, so no one is going to hold it against you if you just need to come out and ask "Is it ok to ask a question about your baby?" or "Do you feel up to talking about the situation?" Your sensitivity will be much appreciated, believe me.

Four Weeks

It has been four weeks since we we discovered that our baby is a little girl. We immediately began imagining our lives with "one of each", a little sister for Eli, just what we were hoping for. Within the hour, though, those dreams were shattered by the news of her multiple abnormalities, likely heralding a devastating diagnosis. By the end of the day we had been assured that this was a baby that would not make it - she probably had Trisomy 18 - and that if she somehow survived to term, she wouldn't live more than a few days. Within 3 days, we had a definitive diagnosis - worse than they had thought: Triploidy - carrying even narrower odds of survival to live birth.

Four weeks.

Each Friday feels like an ugly anniversary - another week gone by since our pregnancy took this dramatic turn. I try not to ruminate on it every Friday, and I'm generally pretty good at distracting myself, but today was tough. I'm beginning to feel like, as our planning and arranging and "doing" for her winds down, I'm getting worse at coping. Or maybe it's just that as my pregnancy progresses and I've spent more and more time bonding with her, the reality is growing more difficult to bear.

At 19 weeks when we first learned of Gracie's diagnosis, I hadn't really felt her move yet. I'd had such a busy semester that it was easy for me to sometimes forget that I was pregnant from time to time! And as I have described here before, I hadn't really "bonded" to her in a meaningful way. Now, at 23 weeks, I feel her move throughout every day. She is constantly reminding me of her presence. I have also gotten dramatically more uncomfortable, with random belly pains, Braxton-Hicks contractions, swollen legs, and that "crowded" feeling in my abdomen that I don't remember feeling with Eli until at least 35 weeks - more persistent reminders that I am, indeed, pregnant. Then there's the "obviousness" of my condition - my belly is only getting bigger - which brings on the comments from strangers with increasing frequency. She is always on my mind, which means that the reality of our situation is frequently bringing itself to the forefront of my thoughts.

"Our situation" in and of itself has also bonded me more strongly to her. I guess it's my protective instinct (which admittedly didn't kick in right away), but knowing that she is sick makes me feel that much more loving and compassionate and sympathetic toward her, much like you feel when your toddler has a fever and is feeling yucky. You want to snuggle them, care for them, "mother" them. I suspect that her diagnosis has made me even more attached, even more desperate to hold her and kiss her and make it all ok.

I'm so glad that I have come to this place of acceptance - at least an acceptance of her, which I didn't initially feel. But along with that acceptance has come an ever-growing bond to her and an exponentially inflating love, which is leading me exactly to where I initially didn't want to go. I didn't want to allow myself to really bond with her or to really love her. My own self-preservation instinct was working to protect me, I suppose. It didn't take long for my mothering instinct to win out over self-preservation, but now that it most decidedly has, I am left broken wide open, raw and vulnerable. We all are, as mothers, whether our children are in the womb or out in the world.

Four weeks in, I feel a deep ache growing inside of me. It's a kind of desperation. It's all becoming more real to me, as the reality becomes unavoidable and settles into my consciousness, and I can feel my "peacefulness" slowly being replaced by an unsettled feeling. I thought I had reached a certain level of comfort with all of this, but I'm growing less "comfortable" by the day. It's starting to hurt. A lot. It has always hurt, but I can feel the pain changing. Something big is coming. I think that maybe I'm about to go through a turning point in this grieving process - probably something necessary, but at the same time terrifying. At first I thought that these "bad feelings" I've been having were related to Gracie's condition, and that I was about to lose her (I've been checking for her heart beat with the doppler somewhat compulsively these past few days). But I just have this sense that she isn't going anywhere just yet. I'm beginning to believe that she's going to surprise us all. And it's not because I've necessarily been hoping for that - like I've said, I vacillate between different outcomes and what I think is most desirable or best for all involved. I just have the sense that she's sticking around. I could be completely wrong, but that's how I feel. I really think that all of this discomfort is related to my grieving process and not any kind of "sign" of impending doom.

For many reasons, I'm afraid. But I'm also ok with experiencing this process. I know that the only way to make it to the other side is to go through it - there's no going over, under, or around it. I also know that grieving for her is a big part of loving her, by virtue of the life that God has chosen for her. He has chosen to limit her time here with us, so being her mother means experiencing this painful process of simultaneously getting to know her, growing to love her deeply, and letting her go. That isn't supposed to happen all at once, but it's what we will have to do, and it's all we'll have. I've said it before, but it's an important reality of which I must often remind myself: This pregnancy, and maybe a few precious moments or hours after birth, are all we'll ever have. If I hid myself from it all, feared it, refused to embrace it and commit myself to experiencing her life in whatever ways I'm able, I would be missing out on the only opportunity I will ever have to be her mother. Just carrying her isn't enough, and if I settled for just giving her a warm place to live until she passed away, I know that I would come out of this experience with tremendous regret and a feeling of emptiness.

Four weeks in, I find myself on the cusp of... something. I'm not sure what. I just know that whatever is to come, it's all integral to the experience of being this sweet baby girl's mama, a gift that has changed my life and a blessing that I never would have understood until I experienced it. I really can't explain, from a practical standpoint, how I've come to feel this way about a child that I've never gotten to meet, but I couldn't possibly feel more sure that she is worth every ounce of pain.

Grieving an Idea

May 16th was one of the worst days of my life. The ensuing weekend wasn't much better. While the grief has let up somewhat as the weeks have passed, we find ourselves in a constant state of mourning. It ebbs and flows, waxes and wanes. Some days are worse than others. Sometimes the reality really slaps me in the face when I least expect it, just when I think I'm having a "good day". Sometimes it's easy to talk about. Sometimes it makes me cry just thinking about it, much less holding a conversation about it. Overall, though, I'd say we're moving toward a "recovery" of sorts - from a more grief-stricken state to a more peaceful one.

The problem is that it isn't over. We haven't reached a point of closure. The physical loss of our daughter is still impending, looming somewhere in the uncertain future. I'm beginning to wonder, though, which will ultimately feel worse - May 16th, or the day our Gracie girl grows her angel wings.

In the past few weeks I have learned that different people grieve in vastly different ways, and that this kind of a loss and its impact on a person's life depend on a seemingly endless variety of factors. What I believe about our situation, having read about so many different variations on infant loss and stillbirth, is that we are at a distinct advantage (if there is any "advantage" to be had in a situation like this) by virtue of the knowledge that we have. We've been given a warning. We know what is to come. Not only will we not be blindsided by this sudden and most tragic of losses - we will have had time to prepare ourselves emotionally and spiritually, to physically make preparations for her arrival and her passing, to contemplate ways to make it special and ways to remember her, to handle the logistics of a funeral and burial ahead of time. We have been able to ensure that we're making the memories we want to make while we still have her with us, like getting a 3D/4D sonogram, recording her heart beat, and having maternity photos taken. As difficult as this knowledge is to bear at times, these are all tremendous gifts. I am forever grateful for each day I have with her, and for the fact that I have been warned not to take any of them for granted.

What hurt so badly about May 16th was losing the idea of her. We didn't physically lose our daughter that day, but we lost her in every other sense imaginable. We lost the idea of Eli's little sibling. We lost our "family of four". We lost Saturday morning snuggles buried under not one, but two babies. I lost the breastfeeding relationship that I was looking forward to. We lost the nursery that we had planned to decorate in yellows and grays. I lost the image of my husband, toddler and newborn cheering in the crowd on my graduation day. All of the things that we had imagined, the plans we had made, the logistics we had thought through so carefully, all disappeared that day. All that is left now is our baby girl herself, completely robbed of the potential that her life once held. No less loved, no less real, no less alive... just robbed blind of all that she deserved, and all that we were so excited to give her in this earthy life that we had planned.

Having all of that stripped away has really changed the way I relate to her, but not in a negative way. All that is left is her - her physical body and her perfect little soul. I'm no longer enthralled with any ideas of what life will be like, what she will bring to our world, how cute Eli will be with her... I just love her for her. It's not that I don't think I loved Eli for Eli while I was carrying him, but having been pregnant twice now, I know full well where a lot of the excitement and anticipation comes from. So much of the joy of pregnancy is found in looking forward to the future. After all, the end-goal of pregnancy isn't just being pregnant, it's bringing a new life into the world, adding to your family, creating a new little person to love.With Gracie, I don't really have any of that anymore - at least not in the traditional sense. There are no other distractions, no future to get excited about... there is only her, in this moment, and maybe not in the next.

Of course I still think about that stolen future, and I grieve for it because I have already lost it. I often wonder if having had the opportunity to grieve and begin to recover from that loss will help to ease the physical loss when it happens. By the time she passes, we will no longer be so heavily mourning the loss of that future. We will be that much closer to acceptance of what cannot be, and acceptance of the fact that her life, however unfairly shortened, was meant for a different purpose than we had planned. That can only help, right? I follow the blog of a friend-of-a-friend who recently (about a month ago) lost her son in utero to Trisomy 18, another severe chromosomal abnormality, and she seemed to confirm that this was true for her. She still feels that the day they learned of his diagnosis proved to be much harder than the day that he was born into heaven.

I take some comfort in the idea that this may also prove to be true for us, and that maybe as a result, we will be able to find a special brand of joy and peace in welcoming Gracie when the time comes. I hope that we will be well-prepared to welcome her with tremendous love and appreciation for who she is, just as she is, whether or not her heart is beating, whether or not she is born with any potential for an earthly life of any duration. I hope that experiencing some of this grief in advance will allow us to be more present, clear-headed, and able to make memories with her.

Before I go, I'd also like to share this beautiful custom creation that arrived today - Gracie's "birthday" present. I have mentioned previously that we were designing a necklace for her, and it turned out exactly as I had envisioned it. It was created by an Etsy shop owner in Canada, actually, who was incredibly generous to us and expedited the process so that we could have it on-hand as soon as possible, given the uncertainty of our circumstances. We want to bury Gracie with a piece of us - something special that will reinforce the idea of the four of us as a family. I know that she will never understand or appreciate the sentiment behind it, but it means something to us to leave her with this "reminder" of our love, of how badly we wanted her, of how sorely she will be missed.

I haven't seen her yet, but I'm reasonably certain that she is, in fact, "too beautiful for earth" ;-)

Prayers please.

Sitting in the car in the funeral home parking lot. Waiting til the last second to go in - don't wanna be sitting and waiting around in there for our appointment time. Trying to see this in a positive light... Our only chance to plan a special celebration for our girl. But this is a little too real. Prayers please.

Mixed Emotions

Am I beginning to sound like a broken record? Mixed emotions have been a common theme throughout my posts since we received the news of Gracie's diagnosis. Nothing is black or white, including our emotions about all this. Perhaps the only pure emotion I feel is love for her. Everything else is gray and convoluted.

Today was no different. Since we never seem to have a dull moment around here, we ended up visiting the hospital again. That brutal headache that I was complaining of in my last post (last night) turned out to be accompanied by high blood pressure, which was sustained overnight and into the morning. We went in to L&D just like last time and got the same work-up. Of course my blood pressure was perfectly fine the entire time we were there - this time I didn't even have to lay on my left side. It was just normal. Which, of course, is wonderful news, but it made me feel kinda dumb for going in! I still had protein in my urine, but all of my other blood work came back normal again, so home we went. All's well that ends well, right?

It was certainly a relief to hear that I was ok, that she was still in there, and that she and I could go home and continue on living this intertwined life that is all we'll ever have together. No one was going to ask me to make a choice - not today. I had fallen asleep last night with tears in my eyes. The last thing I said out loud to Ben before falling asleep was "I don't want it to end this way" - "this way" meaning delivering early, while her heart is still beating, because I'm getting sick. On the way to the hospital today I prayed "Please, God, if this is her time... please just take her now. Don't make me decide. Please don't make me decide." Losing her early because my own health is deteriorating is my biggest fear in all of this, as I've mentioned on more than one occasion. When we were given this news and I was asked (repeatedly, by every health care professional we met that day) whether we had considered termination, it wasn't even a "discussion" or a "decision" - the answer was just no. We couldn't be the ones to choose to end her life then, and it doesn't feel any better now, even with the threat of "medical necessity" looming ahead. So like the weak human being I am, I often pray and ask God to spare me that burden. As strange and foreign and awful and ugly as it feels to ask God to take your own child, I do. I want Him to do it, because I don't want to live with having done it myself.

I feel pretty good this evening, physically, but these hospital trips (all two of them) are so emotionally draining. I notice the high blood pressure, start to worry. Re-check it over and over, hoping the high reading was just a one-time thing. When I realize that it's not going away, I call the OB's office, and I'm told to go to L&D. I call Ben at work and have him start heading home. Then my stomach promptly tightens into a firm knot as I pack. I pack clothes for myself and for my husband, toothbrushes, deoderant. Today I packed the white shirts that I recently decided I'd like for us to wear in pictures with her. I packed her little hats that my dear friend Lisa made to fit her especially tiny 21-week-sized head. I packed a framed 3D sono photo of her. I packed up our box of memory-making supplies from String of Pearls. I got on the computer and read over our birth & comfort care plan for her to ensure that the funeral home phone number was on there and that our wishes were up to date before printing a few copies for the hospital bag. I changed and dressed my son and packed up his things for day care, and wondered whether I should tell him to give Gracie a "hug" before we left him.

It's wonderful that we're home now this evening. I'm relieved and happy that we've "lived to fight another day". But having to repeatedly prepare myself and brace for the worst... it's tough. Not knowing when or where or how "the end" will happen... it's awful. Each time something like this happens and we're confronted with the reality that "this may be it", it sets me back again. I get myself together, feeling good, living the day-to-day, at peace with things, and then something happens that reminds me that this is real. It's really going to happen. Fortunately today turned out not to be the day, but someday "the day" will be upon us, and we will lose her. It's like having a dark tunnel at the end of the light, instead of a "light at the end of the tunnel". I can try to enjoy her, love her, remain upbeat, focus on the happy parts of being pregnant, but there's this cloud of pain looming in the not-too-distant future. I can't "get through" my grief because it isn't over, and I don't know when it will be over, and I keep being reminded of that cloud and just how real it is and just how dark and heavy with rain it will be when it arrives. You can try to set out your picnic and enjoy the sunshine while it lasts, but that dark cloud is always there, threatening. It's a tough place to be living.

That's where the mixed emotions weigh most heavily on me. There are moments, especially in situations like we found ourselves today, that I long for some relief. I find myself wishing that I could just pop that cloud and let it rain - just get it over with. Let the lightning strike and the thunder roll and the winds and hail rip me to shreds, so that I can know that it's over, and I can try to put myself back together again. As desperate as I am to cling to her little life, and as destroyed as I will feel when she is gone, and as intensely as I know I will wish for just one more day with her, I still sometimes wish that I didn't have to live in this limbo. As devastating as they are, I've had some time to come to grips with the "knowns" in this situation. Those realities hurt. But it's the "unknowns" that make it so frickin' hard to live out each day.

At the end of the day, I am so relieved to be pregnant tonight. I am so blessed by her every flutter in there, and I wouldn't trade it - not for anything. It's a trade-off that I have accepted. I get to keep her a little longer and love her a little more, but in exchange, I have to live with not knowing what is to come, or when. But accepting it doesn't mean that I don't occasionally stumble under the weight of it all and show my human weakness. So, here I am, weak but grateful. Just trying to keep my head on straight. Praying that God continues to shower me with a brand of grace and peace and strength that I never knew were possible, to keep me afloat as I wait for whatever lays ahead. I wait, and I pray, and I love her. It's all I can do.

Limping Along

Two days into this surgical rotation I'm already in desperate need of some sort of chiropractic adjustment, orthotic shoe inserts, and a week-long nap. I had forgotten how hard it is to be on your feet all day, especially while pregnant. I had a desk job the last time I was pregnant... that was nice. It doesn't help that my "good shoes" (my professional clogs) are officially too tight now that my feet have started to puff up. I also have a ROCKIN' headache right now, and I'm pretty sure that my right eyeball is about to pop out of its socket. #pregnancyproblems  *SIGH*

Then again, at least I'm still pregnant. At least my baby girl is still here :) Today was a relatively happy day... she gave me her first big "thump" from inside! I've been feeling her vaguely fluttering around in there for close to 2 weeks now, but today I got my first distinct "kick" (or punch, perhaps... tough to say!). Definitely made me smile :) It wasn't all that long ago that I was convinced that I didn't ever want to feel her move - that I was wishing for this to end before I ever got to make that connection. I remember specifically thinking about that, shortly after we found out about all of this. Once again, I'm feeling so very thankful that I've been able to move on from that place. I understand why I was there, but I'm so glad that I don't want to hide anymore.

As open and honest as I am with myself (and you all), I keep struggling with how much to tell people. I work with the same residents every day, but different attending surgeons. I can't read these people... how much is "over-sharing"? Part of me doesn't want to have to smile and lie, but part of me doesn't want to go into it. I never know what to say after people react. "Oh my gosh I'm so sorry" "...Yeah, it's hard..." Awkward silence. Sometimes I just want to wear a sign that says "My baby isn't going to make it" so that people won't congratulate me or ask about her or make any mention of the fact that I'm pregnant. And it's not because I don't want to remember that I'm pregnant... I think about her all day every day, and I'm happy to be thinking about her. I just don't like the awkward conversations, and constantly trying to decide how much to share. I really don't have a hard time sharing or talking about this stuff myself. It's just that I can sense the tension and discomfort in others when I'm telling them about it in person, and that's what makes it uncomfortable for me. I know that they're uncomfortable and they don't know what to say. I thought I'd be avoiding the subject because it would be too painful for me, but I'm realizing that I find myself avoiding the subject to spare others the awkwardness. Most of the time it's just easier to smile and pretend everything is fine.

Then again, sometimes I (selfishly) want people to understand just how tough I am. I want them to know what's going on inside of me, so that they get just how hard it is for me to be standing in front of them in that moment, present and participating and acting like I give a crap about anything else beyond the confines of my uterus. To be honest, most of the time it isn't as hard as I thought it would be, because being there is in itself a distraction that helps me to cope and to keep on moving. But in the difficult moments, when the reality of this situation is at the forefront of my mind and no amount of distraction seems to shake it, I want people to get it. I want some credit. It's dumb, but it's how I feel. I'm not just another med student plugging along, desperately trying to impress someone, working hard for that "A". I'm a mother, somewhere in the process of losing her unborn baby, grieving and hurting and clinging to her sanity, limping toward a finish line she can't see. I don't want special treatment or better grades or "slack". Sometimes I just want people to see me for what I am right now.