Brain Struggles

Over the past couple months Daniel has been catching up on some of the latest Marvel movies. He mentioned something about Captain Marvel. I literally did not recognize that name. It sounded like a completely new superhero to me. No image popped in my brain. He saw the blank in my face. “You don’t remember Captain Marvel either, do you?” He explained that we went to see the Captain Marvel movie in theaters but he hardly remembered it. Suddenly the image of Bree Larson came of mind. I responded, “Oh yeah I very vaguely remember that.” I couldn’t tell you what it was about at all. We looked it up; it came out March 2019. That was probably the first movie we saw after Ginny died. 

That is not the only memory that is super fuzzy around the time of our loss. I have vivid memories of hearing the news, delivering Ginny’s body, and some moments in the days before and after, but generally the year surrounding Ginny’s death is kind of a blur. From the beginning, it was obvious our brains weren’t working normally.  Short term memory, concentration, and some basic skills and logic were lacking. It felt impossible to focus. Tasks that used to be easy took a ton of effort and were exhausting. I’m so glad I didn’t have to go back to work as an engineer because I’m not sure I could’ve done it. 

I felt for Daniel because he did quickly have to return to work in the lab. He would come home and tell me how he felt he was not at full capacity. It became difficult to follow along as grad students explained their problems. He struggled to give advice that would’ve been second nature before. It took twice the effort to get half as much done. He worked so so hard and quickly grew tired, but he persevered and had a very productive year scientifically. I’m not sure any of his coworkers noticed how much effort it took or if he even remembers all he did, but I admired his determination.  

Since then, I’ve learned that being forgetful and having difficulty focusing are very normal after a traumatic event. I’ve read that our brains automatically change when we experience trauma. These changes make it harder to store memories and to use the portions of our brains in charge of reason and concentration. I don’t know much about this, but I’d like to learn more.

My memory and focus have definitely improved since the early days of grief, but I still don’t think my brain is functioning the way it did before. I’m not sure if it ever will. And I sometimes wonder what other memories I might have forgotten. Have I forgotten any special moments during my pregnancy with Ginny? I want to remember all the time I had with her. I also want to be sure to remember all the love and support we received from family and friends after our loss. I’m happy that I kept all the cards and I journaled so much during those days. I can look back and remember what might have otherwise been forgotten. 

If you’ve experienced memory loss or feel your brain isn’t working at 100% after trauma, please know you are not alone. It is hard not to feel as sharp as you once were, but please give yourself loads of grace. 

3 Years Ago – The Day of No Heartbeat

Psalm 6

O Lord, Deliver My Life

To the choirmaster: with stringed instruments; according to The Sheminith. A Psalm of David.

6 O Lord, rebuke me not in your anger,
nor discipline me in your wrath.
2 Be gracious to me, O Lord, for I am languishing;
heal me, O Lord, for my bones are troubled.
3 My soul also is greatly troubled.
But you, O Lord—how long?

4 Turn, O Lord, deliver my life;
save me for the sake of your steadfast love.
5 For in death there is no remembrance of you;
in Sheol who will give you praise?

6 I am weary with my moaning;
every night I flood my bed with tears;
I drench my couch with my weeping.
7 My eye wastes away because of grief;
it grows weak because of all my foes.

8 Depart from me, all you workers of evil,
for the Lord has heard the sound of my weeping.
9 The Lord has heard my plea;
the Lord accepts my prayer.
10 All my enemies shall be ashamed and greatly troubled;
they shall turn back and be put to shame in a moment.

Anticipation

No one is more excited than a child waiting for Christmas morning! I remember being so eager and impatient to open gifts and celebrate the day with family. I also remember that feeling fading as I got older and how sad that was. When I was pregnant with Ginny, I was so looking forward to reliving the magical Christmas excitement through her. That was one of the many things we lost after she died. She will always be missing from our Christmas mornings, but we are thrilled to share Christmas with Chet and see his anticipation. 

Anticipation for Christmas – that’s what advent is all about. We take this time to eagerly expect our savior. And while a child is excited to open gifts, we can be inspired by their sense of anticipation and wonder to reflect our hearts in expecting Jesus, the greatest gift.

Death reminds us of how broken our world is and how much we need Jesus. Jesus came to heal and restore. Because of His life, death, and resurrection we are reunited with God and have the hope of heaven. Because of Jesus, I will get to see Ginny again. This year I am sad that Ginny isn’t with us, but I also choose to celebrate that we are one year closer to seeing her again. 

I believe God gives us small examples or metaphors from our own lives to reveal to us His heart or allow His Word to “hit home” in a way we never understood before. Christmastime is chock-full of these metaphors if you look for them. A child’s excitement reflecting our anticipation of Christ is one example. 

For parents, experiencing the love for your child is a small glimpse of God’s love for us. For loss parents, the  aching for our children gone too soon shows us God’s aching to be near to us. Our desperation to spend even one more minute with our babies gives us a small insight into God’s heart. He is a Father separated from His children, tirelessly seeking after them, drawing near to them, and wanting them to know He loves them. He does that through Christ. And poetically, it is through Christ that we will also be reunited with our children. The aching will be satisfied thanks to Christmas. It is definitely worth anticipating.

“Keep yourselves in the love of God, waiting for the mercy of our Lord Jesus Christ that leads to eternal life.” Jude 1:21

Release

Sometimes the grief builds up and needs to be released. It feels heavy on my shoulders and on my heart. A good cry or journalling session usually does the trick to lighten the burden. If I go a while without being able to release the pent up grief, it just builds and builds. If it goes too long, I don’t have the energy to go about my normal day. 

One day a few months back, I was feeling this way. I knew I needed to cry, but I had to care for Chet. All morning I was feeding him, reading to him, and playing with him with a heavy heavy heart. I finally made it to nap time. My plan was to bounce him to sleep on a yoga ball while singing a lullaby (the ONLY effective way to get him to sleep at that time) and then go to my room and bawl my eyes out. I was looking forward to it; I needed the release. 

I started bouncing and singing, bouncing and singing. It wasn’t working! I kept bouncing and singing for what felt likes ages. He just kept looking up at me, refusing to sleep! I was getting frustrated. Ugh! Just sleep! I need to cry! I kept trying and trying. I called out to God, “Please help Chet sleep! I need to go cry! Please!” God responded, “Rock him.” I rolled my eyes. That will not work! He doesn’t sleep when I rock him. I’ve tried that a thousand time. It doesn’t work. I kept bouncing and singing, bouncing and singing. Nothing. “Ugh! God, please help Chet sleep! This grief is so heavy. I need to cry to release it. Please!” He responded, “Rock him.” That won’t work! I was getting so frustrated! Bounce! Bounce! Bounce! Nothing. Ahhh! Fine! 

I angrily stood up and walked over to the glider, knowing that rocking him was futile. He never fell asleep when I rocked him. We sat down. I looked Chet straight in the eye and started rocking and singing the lullaby. He looked up at me with his big brown eyes and started… laughing. He laughed a huge belly laugh and didn’t stop. I couldn’t help but laugh myself. The two of us rocked and laughed, rocked and laughed, rocked and laughed! Soon I felt my grief releasing and my heaviness falling away. 

Chet didn’t take his nap that day, and I didn’t cry that day. But we both felt refreshed. God saw my burdens and decided He didn’t want me to mourn with tears that day. He wanted me to mourn with laughter! Thank you, God! 

“He will yet fill your mouth with laughter.” Job 8:21

“A time to weep, and a time to laugh; a time to mourn, and a time to dance.” Ecclesiastes 3:4

“Blessed are you who weep now, for you shall laugh.” Luke 6:21

Surgery Update

As I shared in my last post, during my pregnancy with Chet we discovered the cause of Ginny’s death. I was born with a septum in my uterus, which divided the upper portion of my uterus in two. The septum interfered with blood flow to Ginny’s placenta causing her to lack the nutrients and oxygen she needed to survive. Despite Chet’s placenta growing onto the septum as well, he grew and was born healthy at 39 weeks. It was truly a miracle! 

Thankfully a uterine septum can be removed with a quick outpatient surgery. The decision to have the surgery was simple. Daniel and I wanted to do everything in our power to prevent what happened to Ginny from happening again. Even though we were not planning to have another baby anytime soon, we wouldn’t be able to rest knowing how risky it would be for me to get pregnant. 

I scheduled my septum resection surgery via hysteroscopy for July 1. My parents came to town to help take care of Chet during surgery and recovery, and Daniel came with me to the hospital. As we arrived, we saw sunflower garden flags outside the gift shop – God always sends reminders of Ginny. It was nerve-wracking to be put under general anesthesia, but overall I felt peace about the surgery. The hospital was well organized, and things moved quickly. Before I knew it, I was waking up in post op trying to reorient myself (which was difficult to do since I left my glasses with Daniel). My very kind nurse helped me. 

One of the doctors came in to inform me about the surgery. The septum was much larger and thicker than they expected, but they were certain they removed it all. As she explained this, I broke into tears. She asked if I was alright, and I replied, “Yes I’m just thinking about my daughter who died.” She understood and was empathetic. Daniel and I went so long without knowing what happened to Ginny, so to get confirmation that what caused it was significant and is now gone was overwhelming in that moment. 

The doctor then informed me that there was one complication during surgery – the last portion of the septum went so deep into my uterus wall that while removing it, they made a small perforation in my uterus. This was a risk they mentioned prior to the surgery. It’s unfortunate, but thankfully the uterus heals very well on its own. The area that was perforated was the least-risky place, and it should not pose any additional risks in future pregnancies. 

My recovery has gone smoothly. I’m so grateful for my parents and Daniel for taking care of me and Chet this week. I couldn’t do this without them. Any discomfort that I have been in during recovery feels so minor compared with the benefits of this surgery. I’m so grateful. 

I still can’t believe we found out what caused Ginny’s death! I can’t believe that it was fixable, and I can’t believe Chet survived in the womb prior to it being fixed! I’m so relieved that it is fixed now. 

This surgery has me asking “why” again. Why was I born with this septum? Why didn’t we find it sooner? Why did Ginny die? Why was Chet spared? I think it’s ok to ask these questions even if we don’t always get answers. Life isn’t easy, but God gives me peace by reminding me that we have hope. Ginny is happy and loved in heaven, and we will be a complete family together one day. 

Thank you for all your prayers! 

Stillbirth Q&A

How can you comfort a friend who has experienced baby loss?

  • Know there is nothing you can say or do that will fix it or ease the pain. Do not even try. What is the most helpful is to sit with them in the pain. Acknowledge it, and validate that this is really hard. You can do that by listening, texting, or even sending a card. You do not need to offer a silver lining, as much as you may want to. 
  • Say their baby’s name! Let them know you are thinking about their baby. Don’t be afraid to bring it up. Remember important dates like heavenly birthdays and due dates. Send a text or call on the anniversaries of those dates, year after year. That is such a blessing to a mom or dad whose baby died.
  • Be understanding if they don’t seem like the friend you used to know. They are never going to be the same, and they are coming into their new identity. Be supportive of that. Invite them, but let them know it’s ok if they don’t come to your baby shower or if they want to sit out your birthday party. Give them grace after grace, but please keep inviting them. It is very isolating to lose a baby, and it can often feel like you are losing friends too. Keep reaching out. 

What’s the best way to tell a friend who lost a baby that you are pregnant?

We had wonderful friends write us a heartfelt letter telling us they were pregnant a couple months after Ginny died. It meant so much, and we were truly happy for them. I definitely recommend writing a letter, text, or private message. It is good for the friend to be able to process the emotions ahead of a face-to-face meeting. You can tell them one on one, but I definitely would not recommend announcing in front of a group or via a social media announcement. Even if the friend is really happy for you, they will still have a lot of conflicting and difficult emotions. Give them grace and patience.

How could you bear the pain of childbirth without a living baby? Why didn’t you have a C-section?

There are more risks to the mother with a C-section than a vaginal delivery, and I wanted to deliver her as I had imagined. It was a way to mother her. It was so scary, but it felt like such an honor. I did have an epidural, but it didn’t work on the right side. Looking back, I’m glad it didn’t because it gave me physical pain to yell through. My heart was in such agony that I needed that physical outlet.  Although it was hard, I look back at that day with love and pride.  Giving birth was the easy part. Living everyday after without Ginny was the hard part. 

Did you take pictures of Ginny’s body? Do you share them? Why?

  • There is absolutely nothing wrong with sharing pictures of a baby who died. Just as all parents are proud of their kids and want to show them to the world, loss parents feel the same way. These are the only pictures we have of our children. When we see them, we see their life, not their death.
  • This wasn’t something I thought about before Ginny died. We made this decision while I was in labor. It seemed so strange to me to take pictures of a dead person, but it would be our only chance to have pictures of her outside the womb. It didn’t seem right to me to take pictures of her with our phones. That seemed so casual. I didn’t want to take a picture of her the way I would take a picture of a latte. I didn’t want to see her as I scrolled through my phone. It felt like a sacred moment, and the phones did not seem sacred enough. We decided to have the nurse take pictures of her with a camera. I wish we did take pictures of us holding her as a family, but I couldn’t handle that at the time. We made the decisions best for the moment. We keep the photos in our memory box the nurse made. I have only shared them with a few family members and close friends. They are so precious to me. Maybe one day I will share them more broadly, but for now I hold them close. 
  • There is an excellent organization called “Now I Lay Me Down to Sleep” that send photographers for this very purpose. I knew about this, but decided I didn’t want a photographer there. 

Why do you talk about your stillbirth? Why do you blog?

  • I talk about Ginny often to whoever will listen. I talk about her because I think about her all the time. She’s my child and is still a huge part of my life. I love her so much. When I think and talk about her, I’m filled with love (just as anyone is when they talk about their child). I appreciate all those who listen and who bring her up in conversation. I’m sorry if it makes you sad or uncomfortable. It really does make me happy. 
  • At first I struggled with whether I wanted to post about Ginny’s death on social media. But then I realized that I had posted about expecting her so it felt strange to not say anything else. I planned to post once to announce her death and not mention it again. But then I started writing. I started writing just for myself for my own healing. I was not planning on sharing; I didn’t typically share much on the internet, especially something so emotional and personal. But then I felt that the Holy Spirit was prompting me to share. I didn’t want to, but I did anyway. After I posted, I realized how many people could relate to our story. It led me to meet several women who also lost babies. I realized how much of a stigma there is around baby loss and death in general. I realized how little people actually know about grief. It is valuable to share our stories to help each other feel a little less alone and give each other permission to grieve. 

What’s the hardest part of stillbirth?

When your baby dies, you don’t just lose a baby. You lose a toddler, a child, a teenager, an adult child. You miss every birthday, Christmas, first day of school, wedding, grandchildren. You miss every “good morning” and every “good night”. You miss every hug. You miss every sporting event and evening stroll. You miss all the would-be memories and all the mundane moments you would’ve forgotten. You miss it all.

What’s the hardest part of pregnancy after loss?

The hardest thing for me was feeling like my body was a ticking time bomb. It was painful not knowing when or if your baby is in danger. By the end, waiting and trusting was so difficult. It is the second hardest thing I’ve ever been through. Of course it was worth it all to have Baby Chet. 

Do you plan on telling Chet about Ginny?

We already talk to Chet about his big sister Ginny in heaven. We will continue to talk about her, so Chet will always know her as part of our family. We include her in family traditions. For example, when we went to the pumpkin patch, we picked out a pumpkin for Chet and one for Ginny. We have a Christmas stocking for Ginny too. Anytime we see a butterfly when we go on family walks, we are reminded of Ginny. I tell Chet that Ginny’s thinking about us and loves us. 

He’s Actually Here

He’s here! We did it! Chester Thomas Jones was born on July 21 at 9:18pm. He was 8lbs 10oz and 21in long. He is perfectly healthy. He is perfectly perfect!

I can’t even begin to describe the amount of joy, gratitude, and relief when I first heard his cries and every moment since. Everyday I hold him, look at him, and am just overcome with love and joy beyond what I expected. The first two weeks I would weep in praise to God. 

Chet doesn’t replace Ginny, but Chet does show me there is redemption in life. This is how it is meant to be. Life, not death! It is so beautiful! Knowing this – knowing what we are missing with Ginny makes her death all the more tragic. It makes me love her and miss her more. Her brother looks just like her. At night I look down at him in the dim light and can see his sister’s face. My heart fills with love for them both. Somehow her life makes me appreciate him more, and at the same time his life makes me appreciate her more. 

There have been a couple very sweet moments that seemed to connect Chet and Ginny. During Chet’s delivery I wore a necklace that reminds me of Ginny. It is the necklace my parents got me a few days after she died. It has a little flower bud on it; my mom said it represents Ginny and hope for the future. In the first minute after Chet was born and placed on my chest, his little hand grasped my necklace. That moment was such a contrast to Ginny’s silent birth, and as he held onto my necklace I realized what a full circle moment it was.

Another sweet connection was waiting for us when we got home from the hospital. On Ginny’s birthday back in February, a wonderful friend sent me a sunflower growing kit. It came with different varieties of sunflower seeds. During quarantine Daniel and I planted them in pots on our back porch. They bloomed the day we got home from the hospital. It was Ginny welcoming Chet home!

Even in the midst of the exhausting newborn period, I am so so so grateful that Chet is here and that pregnancy is over. Pregnancy after loss is extremely hard, and I never quite believed we would bring home a living baby until we did. When he is crying at night and Daniel and I struggle to get him to sleep, we just look at each other and smile. He is actually here! He is so beautiful! As exhausting as it is to have a newborn, it is far more exhausting not to have one. I’m grateful to Ginny. Because of her, we cherish life more and take nothing for granted.

Waiting

I’ve entered the third trimester. I’m glad we are that much closer! I’m still a couple months away from how far along I was when we lost Ginny, but that date is looming in front of me. How can I face that time? It feels so overwhelming to think of that week, of that day, of every day after. How can I be sure that it won’t happen again? How can I bear the weight of life or death at that time? It seems like it will be too much to handle. 

I ask God how will I be able to handle it. He reminds me again of the comfort I experienced by his presence on the day Ginny was stillborn. He was with us. That’s not the answer I want to hear. I want assurances! I want promises of life! I don’t want to wait! I want to know now that I will for sure bring Chet home! Don’t I deserve to know after last time? Haven’t I earned that? Haven’t I been patient for long enough?!

God hasn’t yet given me the grace for two months from now; he has only given me the grace for today.  I have the grace and ability to make it through today. That’s all I need…until tomorrow. 

“Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” Matthew 6:34

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’” 2 Corinthians 12:9

One thing I’ve learned about God’s character through our loss is his patience. His timing is not our timing. In the scale of an eternal timeline, our lives are a brief moment. He doesn’t do things as fast as we’d like, but conversely he gives us all the time we need. Sometimes we will take months or years to listen to what he’s telling us, and yet he waits for us. When I couldn’t even form a prayer, he sat with me. He still sits with me in my impatience. 

“But do not overlook this one fact, beloved, that with the Lord one day is as a thousand years, and a thousand years as one day. The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance.” 2 Peter 2:8-9

I’m sure Mary and Martha experienced much impatience when waiting for Jesus after they sent word that their brother Lazarus was sick. Lazarus got sicker. Lazarus died. It wasn’t until 4 days later that Jesus arrived. They must’ve thought, “Doesn’t Jesus love Lazarus? How could he let him die? Why wouldn’t he come right away?!” They had faith that Jesus could heal Lazarus, but Jesus was taking too long. But then Jesus came, wept with the sisters, and then raised Lazarus from the dead (John 11:1-44).  His timing isn’t our timing, but his is the right timing.

Grace for today is all we have. I pray that the Holy Spirit brings me the patience to make that enough for me. 

“But if we hope for what we do not see, we wait for it with patience.” Romans 8:25

“Rejoice in hope, be patient in tribulation, be constant in prayer.” Romans 12:12

Making Room

Every second-time mother I know has cried about having another baby. They ask, “How could I ever love another child as much as I love my first? What if I’m not able to continue to give my first child the attention they deserve?” 

It wasn’t until I was pregnant that I realized that all of these questions and concerns also applied to me even though my first child had died. 

Often when I’m crying, I assume it is because of my grief and the difficulties of pregnancy after loss, but I need to realize that sometimes I’m crying because all second-time mothers cry when going through the transition of anticipating another baby. All second-time mothers need to make room in their lives, houses, and hearts for a new baby. They have to share the space. The same is true for a loss mom. 

How could I ever love another child as much as I love Ginny? 

What if I’m not able to mourn Ginny the way she deserves? 

Like all moms, I need to make the space and find a new routine. 

If you’ve lost a loved one (even just broken up with a boyfriend or girlfriend) you realize just how much space a missing person takes up in a home. Everything reminds you of them. The spaces where they were are filled with their things. Even though we took down the nursery less than a week after Ginny was stillborn, our “guest room” was filled with her garden decor. The closet had a plastic wrapped stroller in one corner and a boxed crib mattress in the other. The shelves were full of a vacuum sealed breastfeeding pillow and baby lounger. The racks were empty, but every time I looked at them, I saw all her little pink and white outfits hanging there on miniature hangers. 

Even in our master bedroom, there is a basket of homemade blankets, artfully crafted to comfort us in our grief. Under our bed is the disassembled crib and the priceless memory box we got from the hospital. The memory box is too sacred to pull out often, but we know it’s there. Our desk has a collage of ultrasound pictures. The hall has framed quotes to encourage us, a vase of sunflowers, a small “hope” placard, all reminding us of Ginny. She’s everywhere, and that’s how we like it. It makes us happy and fills us with love. 

So how do we make room in a house that is already full? We started this weekend. I wrapped up and packed up the “You Grow Girl” pots, I took down the wooden wall art with vegetables, we folded up the floral quilt. Daniel hung shark and whale pictures. We got a blue striped bedspread. We hung cute fish-tail wave hooks. We ordered beach photos to fill the gallery wall frames. We washed and neatly hung the little blue and gray onesies on miniature hangers in the exact spot where Ginny’s clothes were. 

We did it. Piece by piece the transformation is happening. It is bitter sweet. It is sad that it’s not Ginny’s room anymore. But we are happy to be decorating Chet’s room. More than symbolizing hope of bringing Chet home, redecorating the nursery is a way to parent Chet now. It allows us to do something to care for him and show our love for him. It’s a way to bond with him. 

I don’t regret having snipped a single tag off of Ginny’s clothes. I don’t regret having the nursery complete before she died. It’s some of the best memories of parenting her while she was with us.  I knew we needed to do the same with Chet, no matter the outcome. Although I will say that while hanging the cute little boy clothes and seeing the beachy blues around the room from the glider, I do imagine bringing him home and watching him grow. 

My heart is making room for Chet. I can love both Ginny and Chet, just as all mothers can love all their children. And just as all mothers must find new routines and split their time, I will make time to care for Chet and mourn for Ginny. And just as all siblings grow up together, Chet will grow up with Ginny. He will see the vase of sunflowers. He will see the ultrasound collage and make a fort out of  knitted grief blankets. One day he will even look through the precious memory box and see a picture of his sister’s face and touch the molds of her hands and feet. He will know he has a big sister who loves him in heaven. He will know there is more than enough love to go around. 

Helpful Resources

I couldn’t have made it through this past year without the love and support of family and friends and lots of prayer. I also found a lot of help and comfort from several other resources. I wanted to share those here. I cannot explain how valuable these books, podcasts, and songs have been to me. When I am feeling despair, they point me back to hope and love. I’ve read a lot over the past year, but these were the resources that stuck out to me. I really hope others may also find support through them. I’ve bolded the ones that were particularly impactful.

Books: 

  • Loved Baby by Sarah Phipott, PhD*
  • Anchored by Erin Cushman*
  • A Grief Observed by CS Lewis*+
  • It’s OK to not be OK by Megan Devin+
  • Inheritance of Tears by Jessalyn Hutto*
  • 7 Lessons from Heaven by Mary Neal MD*+
  • Once More We Saw Stars: A Memoir by Jayson Greene
  • Choosing to SEE by Mary Beth Chapman*
  • The Unspeakable Loss: How do you live after a child dies? by NIsha Zenoff, PhD

Podcasts:

Blogs: 

There are so many wonderful blogs about grief and baby loss, but these are two that I find extremely helpful.

Music: 

Instagram Accounts:

*Faith-based; +General grief, not only baby/child loss

There are so many amazing resources out there, and these are just a few that I stumbled upon at my local library or googling around. If you have some other helpful resources, please share them in the comments. 🙂