PSALM 22:10 WHEN I LEFT THE WOMB YOU CRADLED ME; SINCE THE MOMENT OF BIRTH YOU’VE BEEN MY GOD.
Three years have passed since my baby Lucy went to heaven. It always seems a bit ironic to me that the worst day of my life was the best day of Lucy’s life. Since I haven’t experienced heaven yet myself, this is just a theory, but I imagine that for all of the citizens of heaven, the best day of their entire lives was the day they arrived. That was the day that their pain was erased, their bodies were healed, their sadness replaced with joy, their losses redeemed and their fear completely swallowed up by Love. From the slum to paradise. Such a sharp contrast. I’m trying to be happy for my baby today, but my heart aches from such a long separation. This day always brings back devastating memories of how she died and what we all went through on that day. A friend of mine recently lost her two year old daughter to cancer. She told me that some of the hardest daily things to deal with are the flashbacks. I know she didn’t mean that to be encouraging, she was just telling me how she was doing, but it has encouraged me so much. It reminded me that Lucy died ONCE. She experienced severe anemia, fetal hydrops, heart damage and death ONE TIME. It’s over and she is experiencing pure peace and joy right now. But over the past three years I have experienced her death over and over and over again in my head. Just the other night at Chickfila I saw a woman who had been pregnant the same time I was pregnant with Lucy. When I saw her healthy two year old run onto the playground it triggered so many terrible flashbacks and feelings. While she enjoyed watching her son play on the playground I saw Lucy dying all over again. I felt like my insides were being washed with the heaviest sadness that still lingers, several days later. But it is comforting to remember that the flashbacks are just flashbacks. No matter how real and painful they are to me, they are not happening to Lucy. She only experienced it ONCE and she will never experience it again. I’m clinging to that truth today. She is safe.
When I was pregnant with Nora several people warned me that going from two to three kids was a hard transition. But the truth is, I already went from two to three kids in 2013. When Lucy died she didn’t stop being my daughter and I didn’t stop being her mother. The most agonizing transition for me was going from having all of my children under one roof to having one in heaven. Even though Lucy lives in heaven, I have been parenting her these last three years, and it’s the hardest thing I’ve ever done in my life. I parent Lucy in a completely different way than I parent Liam, Asher and Nora.
What does it look like to parent a child who lives in heaven? For me, it means I grieve my daughter well. I acknowledge her life and her absence instead of pretending that she never existed. Even though her milestones are different from her brothers’ and sister’s, I celebrate them just like I celebrate my other children’s milestones. I appreciate life more and I empathize with others who are grieving. I allow Lucy to continue impacting the world through me. I ask God to use my pain and my loss for good. I try to honor Lucy by using her life and death to help other people. One way that God has been able to do this is through my blog. I never would have started this blog if it weren’t for Lucy, obviously. I wrote my first blog post shortly after we lost her and thought, “There is NO WAY I can share this private, painful part of my life with the world.” But God (and some faithful friends) urged me on. When I clicked “Publish” for the first time I literally felt like I was going to throw up, I was so nervous. I don’t enjoy being the center of attention, it makes me extremely uncomfortable. But isn’t that just part of being a parent? Doing hard things and sacrificing our own comfort for our children? Yes, I decided I could do that for Lucy and for God. And through this blog I have been able to let my little Lucy light shine. I am so proud of my baby girl. She only spent 20 weeks in the womb but she continues to impact the world even three years later. Did you know that because of Lucy, other babies have been saved? Broken hearts have been comforted and those who are weary have been encouraged to hope.
Today I want to brag about my baby Lucy. I get to show off my three earth children every day, whether it’s pictures on Facebook, smiling proudly when we are out in public together, telling their Daddy about something cute they did or celebrating their lives at their birthday parties every year. I wish I had better pictures of her but I didn’t have a camera with me at the time and I was in shock. I only took a few quick pictures with my cell phone. Here is my sweet, one pound Lucy.
Only one pound but she touched so many lives. I want to share with all of you some of the stories from people she has helped, like baby Mack. Mack’s older sister died after being attacked in the womb by antibodies, like Lucy. His mom, Tiffany, found my blog and reached out to me when she was pregnant with her rainbow baby. I was able to get her the information she needed to fight for her baby Mack and I was able to connect her to the Facebook support group where she received even more support. Mack almost lost his life like his sister but he made it and is now completely over the antibodies and doing great!
When I see babies like Mack it brings me so much joy. I get to watch God bring good out of my worst nightmare. Here are some other people who have been impacted by Lucy:
I learned about Kell with my first pregnancy but she wasn’t affected by it. When I got pregnant with my second child, I had a very strong feeling that she or he would be affected. I just had an intuition. Everyone told me NOT to search the Internet about this disease and that everything on the Internet would scare me. Every night I searched and searched trying to find some answers on what anti Kell was exactly because even my Drs didn’t have clear answers. Either way, I knew it was a scary thing. I searched high and low….I just wanted to find someone else who knew what I was going through. Even my own husband wasn’t interested in learning more about it. I felt very alone. Finally I came across a blog a about a little angel named Lucy and her mother Bethany who had these Kell antibodies as well. As I read more and more I had to find Bethany and ask her questions….I searched her name on Facebook and wasn’t sure if it was the correct Bethany, but I thought let me message her – what have I got to lose. A few weeks later, I got a message back after she found me in her “others folder”. We both realized we were a week apart in our pregnancies and we’re both having girls. She told me about a private Facebook group that was filled with other mothers who had the same antibodies and issues that we both faced. I couldn’t believe it! I was so happy!
Throughout my pregnancy my family, friends, Drs said to stay away from the group because it will scare me or seeing depressing stuff would be bad. It did the EXACT opposite of that. These girls and Bethany in particular saved me, saved my sanity, and saved my daughter! I was so grateful to go through my pregnancy with people who understood ! I didn’t share my pregnancy with most people in my life because I wasn’t ready to explain the problems and complications I was going to have. My daughter was born 6 weeks early and needed 2 post birth transfusions after having 3 in utero. The ISO moms were there for me no matter what! I still pray for each of them and their babies every single day! Thank God for Lucy leading me to this group! Here’s a picture of me and my ISO baby- she is now a healthy 7 month old.- Amy Dell Koch
For me, Bethany, you were MY savior during the most difficult part of my life. You helped me grieve and you also helped me feel not alone and not weird. I honestly don’t think I could have made it through some of my darkest days if it weren’t for you standing by (with an email). My husband always mentions you. I always felt that my Grace and your Lucy must be up there – watching over our pregnancies and our miracle babies. I am so thankful for what you did for me. I hope in some small way I have been there for you too. ~Callista Puchmeyer
You don’t know me (I live in Saskatchewan, Canada), but I stumbled on your blog a couple of years ago, when I lost my son, Elijah(June 22, 2013). I was 18 weeks pregnant. We don’t know for sure why he died, but we discovered last year that I have a uterine abnormality, called a partial uterine septum. It is essentially extra tissue at the top of the uterus that doesn’t have good blood flow. If that baby implants there, they can experience growth restriction, the placenta may not be receiving enough blood/nutrients etc., and eventually it can lead to death, preterm labour, or placental abruption. The suspicion is that that is what happened with Elijah. I just had the surgery to fix my uterus earlier this month, so hopefully someday in the future we will have a “take home baby” of our own. I long to have a pregnancy that ends in the birth of a healthy crying baby, instead of silence and grief. It has been a long, painful road of missing Elijah, struggling with infertility, struggling with anger and resentment, and struggling to be the lone infertile/childless couple in a very fertile church family and community.
So even though I don’t have a antibody problem, it was wonderful to me to stumble on a blog where someone else was voicing all the hurts and prayers that I myself was expressing…especially when I felt so isolated and alone. Even my close Christian friends didn’t really understand how the grief of a child gone to heaven could influence every part of my life for years to come. Even though many would agree that “a unborn baby is still a baby”, I don’t think (even Christian) society REALLY views it as being the same/similar to losing a child who was born alive, unless they experience it themselves. So people expect you to get better much more quickly, put your grief behind you, and so on. And I couldn’t. I still think of Elijah every day, many times a day. All the important date anniversary’s are hard, certain months of the year are hard, holidays are hard. Of course I feel much more joy in my life these days; I am not depressed any longer. I enjoy life. But I lost my Dad when I was 16, and my grief for Elijah is just as strong and has permanently changed who I am as a person. So many people don’t understand that! I really struggled with God (and still do at times) over this loss and our infertility, and I don’t usually feel free to express that out loud, because I feel like people are sort of like “still? Maybe you should see a doctor if you are still hung up on that?!” Ultimately my faith was strengthened through our experiences, as yours was.
Anyway, what I’m getting at in all that rambling, is that it really helped to read about how you also struggled with your faith, with the ‘why’s” and with continuing to miss Lucy and your other babies, even though you didn’t get a chance to know them. I was thankful for the scripture you quoted, and for seeing the process you worked through, and that God was working IN you, through all of it. It really helped. I check back on your blog often, to read about how you are making out with your dear Nora. 🙂 So happy for you guys! God is great. Even in the dark times.
So yes, Lucy definitely touched my life, and so did you! Absolutely. Many tears were shed over your blog, for you and also for our own situation. You are a blessing to me. 🙂 Thank you!
Lucy’s story was the only thing I could find 3 years ago when I got pregnant with my first iso baby. That’s where all of my research started and eventually led me to the Facebook group so for that I’ll always be grateful! Even though I’m not as educated in this subject as other mamas anytime I find anyone who has been sensitized the first place I send them is to read your story so they can see that it can get bad but there is hope! And this is my baby Dante he is my kell+ baby and even though we didn’t need any intervention during pregnancy he has been affected since birth. He is 4 weeks now but still having problems with his bili levels. He is also off of oxygen and just starting to grow out of his newborn clothes and diapers! ~Nancy Mendoza
I am not sure how I stumbled across your blog but I have been very touched by your story and your faith. I am very sorry for the loss of your precious daughter but am glad you have your three living children to dote on in this life. ~Vivian
I only wish I’d found you before Joey was born! You’ve helped me so much you’ll never know. To finally have found others who 100% understand what we went through is such a nice thing to come from something awful.
Here’s my anti-kell ‘baby’ dressed up as a Box Troll! ~Alison Brooks
Your words on the blog got me through some tough days dealing with kell. I’m so grateful God used your story to help others. It’s been a blessing to see Nora’s story now that came out of Lucy’s life. Thank you for giving us all hope! ~Adria Whelan
I don’t have a picture for you to share but I am so thankful for finding your blog as we begin our journey with anti-Kell! You have been such a great resource for me already!!! ~Nicole Gunderson
Greenleigh is due June 13, 2016. When I found out I was anti-k I came across your blog which led me to this group. It was nice knowing I wasn’t the only one in this situation and hearing all the possibilities of what could happen, both good and bad but especially the good because it gave hope. My first born is K positive but has a different father and my second child is negative since her father is negative and none of our future babies will be at risk thankfully. The hospital even mailed me a card to carry saying I’m anti-k in case I ever need a blood transfusion which is nice since that can be dangerous. You guys taught me a lot so when we didn’t have our answers it kept me positive and hopeful. ~MaKayla Price
Your blog is so amazing in so many ways! I felt so alone when I found out about KELL and I actually had nurses who told me to google the story of baby Lucy. After I lost Julia you were there for me and could relate and I’m grateful to you! I know our baby girls are playing up in heaven together! Happy birthday Lucy! ~Susan Marie
We were so blessed when we found your blog. We referred to you as Lucy’s mom in normal conversation at the supper table, with our coworkers and even with our Drs. Who knows what would have happened to our miracle Madon if we wouldn’t have found you. We can never thank you enough. ~Jillian Huber
I’ve been reading your blog for over a year now. I first stumbled upon it after I had a miscarriage at 9 weeks on August 26, 2014. At the time I was feeling devastated (my husband and I had been trying for a while to get pregnant with our second), and your raw honesty really encouraged me through a very dark time. One thing I really appreciated about your posts was that I felt like you understood (through all of the stories you shared from others) that all pregnancy loss is difficult, whether it’s at 6 weeks or full term. The thing I heard the most from people after my miscarriage was that it was so common, which made me feel like my loss didn’t matter because so many women experience it. Reading your blog helped me to see that other women were just as devastated, but that there was hope to try again. The other area where you encouraged me was that you already had 2 children, and yet you really grieved over Lucy. Another insensitive comment from people was that I just needed to focus on my other daughter, when in reality I needed to focus on the one that I lost in order to grieve in a healthy way. Now, over a year later, I have my rainbow baby (born on August 28th, 2015). What a beautiful gift from God, but I do know that not everyone’s stories end so happily. I just wanted you to know that your strength through your many challenges (to put it lightly) has inspired me to keep going through my own.
I found Bethany through the ISO FB group. I had already been through 1 ISO pregnancy, resulting in my beautiful baby Shea. Luckily I found the group shortly after becoming pregnant with my second. I thought that after all that I dealt with having Shea. Induced at 37 weeks, a stay in NICU, phototherapy, not beng able to hold my new baby was bad. I was upset and it took time to learn how to deal with what happened. I was blind-sided at 30 weeks to discover that I had this antibody issue. Little did I know that that was absolutely easy (not nothing, as every journey has its challenges) compared to what I went through to get our second Rory here. I knew I wanted to try to have another after Shea but was terrified. Rory was a fighter from the start, he is 2 months younger than Nora. While I am blessed never to have a loss like Bethany went through with Lucy, I absolutely understand how these horrible events can happen to us ISO mums. Bethany’s pregnancy with Nora was similar to mine with Rory. She went through the IUTs and delivered before me and I used it as an inspiration of what was to come. I remember vividly reading the post of Nora’s birth story to myself and crying in fear and joy. I later read it to my husband with the same result. Rory arrived on September 25th, 2015. My warrior baby. Even his delivery was similar to Bethany’s with Nora. Scary for a while then quick, fast and I can’t believe this beautiful baby is here in my arms!!!! I had so many dark days, sleepless nights, times when I could not control my emotions or tears. Thank you Bethany for going on this journey with me and Rory. Thank you for sharing both Lucy and Nora with us. Thank you for being so open about your struggle and journey. Thank you for commenting on so many of my emotional posts with words of love. Thank you for taking something so tragic and seeing goodness all around. Thank you for being such a light in such a dark time in my life when I feared daily that I would lose my baby. Thank you for your strength, open heart and faith. ~Ainslie Treleaven
After the loss of my son due to kell I did not know much about this antibody. On top of the grief I believed that I never would be able to have another living and healthy baby…then I researched and found your blog. You helped me so much with information, hope that it would be possible to have another baby and I found this great facebook group because of you! Lucy must be so proud of her amazing mummy and tell everybody in heaven how much you have done for other pregnant and “antibody-mums”. I cannot post a baby picture right now because I am only 18 weeks but I hopefully can as a belated birthday present for Lucy in May/June when baby is here. Thank you so much! ~Fee Munkler
Lucy has held a place in my heart from the first time you shared her with us through your blog. I grieved (though at the time in ignorance) with you and your family. I appreciated your honest wrestling and I was blessed by your continued reliance on God’s promises even when trust was hard.
Then when Dominic died, you reached out to me and became a safe harbor where I could rest when the storm threatened to overwhelm me. Almost twenty years my junior, you have taught me so much.
And now, I am encouraged to share my journey of losing an adult child because of your boldness.
Dominic was always so good with little kids. They loved him. I feel joy when I imagine them together waiting for us to join them.
I would NEVER wish the pain we carry on anyone. But you have shown me that it can be redeemed.
Love you dear one. May God continue to open doors of opportunity because of Lucy.
I was 9 weeks into my first pregnancy when I first heard the term “anti-kell.” Even being in the healthcare field, I was lost. My OB even admitted that I would probably know more about it than her by the time it was all over. So off to a MFM I went. It was very scary because NO ONE knew what I was talking about. The best information I could find online was from your blog. It was information that I could actually understand and process in a time of so much uncertainty. I am so thankful for your story and for your willingness to share something that is so personal because it has definitely touched so many lives! Grant was born on February 13th at 36 weeks due to anti-kell risks, slowed growth, and preeclampsia. He was 5 lbs, 4 oz and only delt with high bilirubin and some eating/breathing issues. Thank you for always being a source of support for so many! ~Lindsey Holtcamp-Koors
I found you after my daughter was stillborn and my adoption plans fell flat. You reflected alot of things I felt but couldnt put into words, which I found very comforting. If you could survive, then maybe so would I. Your blog has also helped me know that it is okay for me to talk about and love my Sinza, just as much as you talk about and love your Lucy.
Happy 3rd heavenly Birthday, Lucy! ~Celian
Your blog helped me navigate anti-k and really understand what was going on with my body and how to find the medical attention I needed… I was sensitized after I had my boys and have now had two healthy girls…
Thank you for your transparency and support.
I cannot imagine all you have been through. Thank you for sharing your story and educating so many people, so we know how to advocate for our babies. I’ve also been in touch with Dr. Moise who was very helpful in helping me communicate with my MFM on some things we didn’t agree on, early in my second sensitized pregnancy. ~Rebecca Ware
I don’t even know how to state how much Lucy has given me. You and Lucy and God got me through my loss of Luke. I love knowing Luke had a sweet, pretty friend in heaven. Your wisdom, tears, frustrations and encouragement in her loss have mirrored and cushioned my own hurt. There are not strong enough words to even say it, friend, but you know. I love Lucy SO much. I wish she were here for the cake and presents too, but then I would not have found you. I would be missing a most precious friendship. And i know God is going to turn our ashes into crowns of beauty and all will feel right when we get to His kingdom. ~Sara
I am Lucy’s grandmother. Her death has been the very worst thing that has happened to me. She left a hole in our family which will never be filled on this earth.
On her third birthday, I would like to think about the gifts which she has given me.
* Heaven is sweeter and more real now. Lucy has a joy-filled life there with the Lord Jesus and some day I will join her. As the years go by, I realize that it is my true home, not earth.
*On the day that I saw Lucy, my heart was broken and I did not understand why this happened. But I did feel God’s help and strength. I know that he will always be there even in the middle of great pain, and this gives me courage for the future.
*I think that Lucy gave me a more compassionate heart. When someone tells me about her grief, I am more attentive and sad because I can feel some of her pain. When Bethany and I lived at the Ronald McDonald House in Houston last year, every child there had a life-threatening illness. It is a great comfort to another to enter into their sorrow with them and I often was able to do that. It was because of Lucy.
I am very thankful for our Lucy. She is a gift from God.
Just before Jesus died, he told his friends, “Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.” (John 16:22)
Someday the sorrow will be gone, and the joy will stay forever.
And the story that is most dear to my heart…the story about a miracle baby named Nora who only got the treatment she needed because her big sister died. Nora would not be alive if it weren’t for Lucy.
Happy 3rd Heaven Birthday, my beautiful Lucy Dair. I will continue parenting you the best way I know how until I can scoop you up in my arms and mother you in person. I am so proud of you.
Three years closer to having you forever.