The flags were flying half mast the day my grandson died.
Untimely birth and saddened hopes, a death instead of life.
We wonder what it might have been if this one baby lived
To grow and run and laugh and play, instead we only grieve.
Ah, babe instead of holding you in our arms today,
We'll always have you in our hearts, you'll never be away.
--Gramma
Yesterday our grandson was buried.
It was a very small service with just family there.
A few chairs, a table for mementos, a small casket.
A few hymns, a short message, many tears.
Yesterday our grandson was buried.
When it was time for the service, Anthony and Lynette received the dear body of their baby Bennett, wrapped in the blanket I made and carried him with tears to the tiny casket that Anthony made and gently laid him in with the little snuggle bunny that Lynette held close to her heart.
We sat in teary silence as the father and grandfathers filled the grave.
A grandmother placed the wreath on the mounded earth and with long last looks we left,
to visit again another day.
We knew early on that there were problems and this is what Lynette said:
We're having a baby, a little boy due in July, but he probably isn't ours to keep. We don't know much except that he has anomalies that lead us to a diagnosis of Trisomy 18. We are devastated. This is a grief we weren't prepared for.... I don't think anyone could be prepared for this. It's the kind that sits on your chest and makes you feel like you can't breathe. The kind that keeps you in bed for days, even though you can't sleep. It's been awhile since we found our something was wrong and it's a little bit easier to put o a brave face now...but then the grief hits out of nowhere and I'm gasping for air again. He could go tomorrow or hold on until delivery or a little after. Some babies survive longer, although statistics are not on our side. We are broke and don't know how we'll ever recover from this, but we are going to love our sweet baby and keep him warm and safe until his little hears drums it's last beat...and then forever after.
Our daughter has taken us with her on this journey by her words.
20 whole weeks (and a few days) of growing this perfect boy. Most Trisomy 18 babies are diagnosed at this time after their anatomy scan, but we've know about his extra chromosome for almost 8 weeks already. A big part of me was angry that we found out so early. I wanted more time to be blissfully unaware....more time to be happy and normal.. The day we got diagnosed the genetic counselor told us that our baby only had a 20% chance of making it to 20 weeks. That phrase has rung through my head a million times in the past two months...20% chance to 20 weeks...that means 80% chance he'll die soon. Every cramp and twinge made me panic. It's be working in triage and feel something off and wonder if I should be in one of those rooms....Even though there are days that I still wish we could've skipped that pain of the past 8 weeks, I'm thankful that we've cherished every moment of this pregnancy in that time...maybe I would've taken those days for granted had we not known. I'm so proud of how hard he's fought to stay here with us. It can't help but smile when I catch this tiny bump in the mirror or feel him wiggle around. It can't wait t meet him, but I'm hoping and praying for another 20 weeks of his precious kicks in my belly.
Really feeling the anxiety tonight. Woke up and can't go back to sleep. This has been the hardest week since our diagnosis. Focusing on the fact that as of midnight we officially made it to 20 weeks. They gave me an 80% chance of miscarrying before 20 weeks so I'm so proud of 'benny for making it this far. He's awake and kicking right now telling me he's okay. Anytime after now is considered still birth which sounds horrible but I'm happy we made it this far because the term miscarriage just wouldn't do this pain justice.
Anatomy scan today was horrible. Bennett is starting to fall behind on growth. He has a significant defect of the left arm. That part makes me really sad. His omphalocele is still there but rather small. he may have cysts in his brain. They believe he has 2 significant heart defects but they couldn't get great pictures because he can't move his left arm and it was in the way. They think a ventricular septal defect and transposition of the great vessels. The heart defects will likely be what causes his death if he survives delivery. Yes, these can be fixed by surgery, but he will never be strong enough to survive it and it's not something we will pursue. i also had high blood pressure already and they are worried about mirror syndrome. This is a serious form of pre-eclampsia and that happens when carrying a sick baby...sick baby=sick mom which is why they call it mirror syndrome. I think my blood pressure was anxiety caused, but they are making me check it every night at work form here on out. If I get mirror syndrome we will have to deliver regardless of how far along I am.
She didn't get mirror syndrome.
The appointment today was better than expected. He only has one heart defect (VSD) and his omphalocele getting smaller. We talked to a neonatologist about how much time we could have with him but she really couldn't give us much info because these babies are so different after delivery. If he survives birth he could pass in the hospital or maybe come home on hospice. Which leaves to a lot of questions like oxygen and feeling tubes and now far we want to go. We feel very unprepared to make these decisions....how does anyone decide stuff like this for their baby?
23 Weeks
The sweetest baby boy there ever was. Ultrasound days are so hard, but we are also love getting to see his beautiful face and little toes. Right now I'm struggling so much with all the unknowns. Anthony and I definitely don't feel prepared enough or old enough or wise enough to make the decisions we now have to think about. All these things are based on "ifs" anyway... "if" he is born alive..."if" he has no additional surprises... "if" he can breathe...I'm hoping somehow we'll just know what to do when the time comes. One thing is for sure though...he is the most loved little boy and we are and we'll be thankful for every second we have with him in or out!
April--25 weeks.
April 22
Being pregnant with a sick baby is so hard. Nothing about it makes sense. Part of the time I'm proud of my growing bump and excited to talk about the perfect baby who is rolling and kicking in my belly. Other times I wasnt to wear a sigh that says "don't ask if I'm pregnant" because the "congratulations!" are just too much.
Anthony and I are still able to laugh at his wiggly self during ultra sounds and point out all his sweet features...a lot of times we're able to find joy in this journey but there's always a moment when it all comes crashing down again and reality hits. It never gets easier hearing the words "stillbirth" or hospice," We shouldn't have to be recording a heartbeat because we have no guarantees of nearing it again. I shouldn't be looking atgrowth curves with his little dot so far away from the line that I thought it was a i
stake when I first saw it. I'm trying so heard to cling to the to the good days and happy moments, Even when everything is so hard and unfair, his little pictures bring me so much jog. He looks so content all snuggles up in my belling...it looks like he's trying ot tell us that he's okay and it will be alright. I love this perfect boy ore than I'll even be able to say. Baby boy, I can't wait to kiss those lips, but please hold on and keep growing strong.
April 25
I'm sending you all a message together because I['m tired and sad. Benny isn't doing well. He's falling behind on growth rapidly which means we could love him soon. we are still hoping that we make it closer to term but it's not looking good. He is beautiful and perfect.
April 26
Bennet Wilder Troyer--4/29/2021 6:25 pm
1 pound 10 oz., 13 inches long
Bennett because it means blessed, and he was blessed. Given to us by God for a moment and getting to leave this work knowing nothing but love.
Wilder because that's all we want for him. To be running through the fields of heaven, picking flowers to save for mama and waiting for daddy to come play. Wild and free.
Our baby Benny passed away snuggled up in his mama's belly and then was born peacefully into his daddy's hands. Our hearts are broken in two We will love our sweet son forever.
Stillborn; still loved.
April 27
Dear Son,
I have heard that there are a few precious moments that will define an entire lifetime. You are one of those for me. No words I can ever speak or write will describe how I felt when I saw your perfect little face.
It was in that moment that I made a promise to never ever take anything in this life for granted again. Every sunset, every birdsong, every waterfall, every smile, every storm cloud, every puppy cuddle, every starry night, every bike ride, every ocean wave, and most importantly every day I have to live. All things that you will never have the pleasure of enjoying. It is the least I can do for you.
Over the last several months I have asked a question that seems so simple, yet is one that I don't know if I will every truly know the answer to. Why" Why you" Why us" Why now?
Even with all of the unknows I have taken solace in knowing that no matter what happed you would be one of the greatest blessings I have had. because of you I have learned how to love more deeply, I have learned how to take life more slowly, and most importantly I have learned what it means to be a Dad.
"If I'm honest, I'll keep you inside my min. As I try to say goodbye. There was more than one heart that stopped that night."
Love you forever,
Dad
April 29, 2021
I feel like I don't have any words for what this week has been. Fear. Heartbreak. Joy. Indescribable pain. immeasurable love. We were so unprepared to meet Benny so soon. We knew stillbirth was a possibility, but I had so, so much hope that we would make it to term and get to meet him alive. When I noticed I hadn't felt him move all day, I thought there was just no way he could be gone. I thought this little heartbeat would start thumping right away when I checked with the Doppler because it just wasn't even a possibility that it wouldn't be there. I didn't even tell Anthony I was worried because I truly didn't believe it could be over already. It doesn't matter how many times we were "prepared" by doctors. I am convinced there is nothing worse in the world than hearing that your baby has no heartbeat...except maybe leaving your newborn's body at the hospital to never see or hold or love on again. It's so unfair. we didn't deserve this. He was perfect and beautiful. We shouldn't only get to share him with the work with a few pictures. as much as I cherish these photos, they don't do him justice. He had the softest head of hair...light brown and a little bit curly. And he was fuzzy everywhere! I hope I never forget the feeling of stoking his little cheeks. His butto nose was exactly as kissable as it was on every ultrasound. Just perfect. He had little tiny nails on his long fingers and his feet were hilariously huge for his little body. He would have been tall like his daddy. We started calling him Benny Rabbit months ago after he would kick while we read him a little book about bunnies. He definitely had big benny Rabbit feet and his fuzzies were so fitting for his nickname. I wish I could feel the weight of his body in my arms just one more time. But I know that one time wouldn't be enough. Oh baby Benny, I would give anything in the world just for one more minute.
April 30, 2021
"An Angel in the book of life wrote down my baby's birth.
And whispered as she closed the book "too beautiful for earth."
Tonight we laid our baby Bennett to rest in the most beautiful casket made by his daddy...a sage place to sleep and one last ultimate act of love. Visit me in my dream Benny Rabbit...I love you more than I could ever say.
May 2, 2021
Today is Bereaved Mother's Day. How fitting. I'm not feeling inspirational or grateful or anything good right now. One week ago, my baby died. One week ago, I felt his last kick and I didn't even know it was his last. One week ago, I went from being pregnant and not taking a second of if to being...not. I'm angry and sad and wish I was still rubbing a big round belly full of life. I even wish I had back pain and stretch marks and heartburn. I'd take it all. Instead, I'm here in bed, looking at pictures of my baby boy and wishing everything was different. To all the mama's "celebrating" this holiday: I'm sorry. This is the worst club to be in.
Mother's Day 2021
This is not what you should be doing on Mother's Day, but it is. You should be happy today, but you aren't. With all that siad, you are and will be the best mother for our children. It will never stop being proud of you.
I love you, Anthony
May 8, 2021
Stillbirth is so unfair. It's like the most cruel joke the world has to offer. You "almost" get a baby. Almost, but not quite. It's a weird thing to be jealous of parents whose children died in their arms. but I so am. i wish so much for that, that Benny could have died in my arms. That's how horrible stillbirth is...that holding your child as he dies is preferable. I look at all these other trisomy parents who got more time and I'm so jealous. Some have gotten years with their baby. Some months, days, hours, or even minutes. I got nothing. I got a beautiful baby who was born without a heartbeat. I think my biggest guilt comes from not knowing exactly when he dies. The day it happened, i was just living life normally, not knowing he was struggling. That's not how it should have been. even if I only got seconds with him. I should have been holding him. I wanted him to be able to see me, just one. I wanted to be able to hold him tight on my chest and tell him I loved him and that I wanted to be able to hold him tight on my chest and tell him I loved him and that it was okay to go. I know his was safe in my belly when he died and that he was warm and comfortable. I know I was there, but I feel like I wasn't. I didn't know. I know I can't change it and I shouldn't dwell on it. I just keep thinking over and over that it's not fair. because it's not. Because still birth isn't fair. What I've learned about his so far is that the grief, guilt, anger, pain...it's just love with nowhere to go. I love you, Bennett. I miss your little fuzzy head oh so much.
"Like a stab would every time,' he said. Leaves a hole, and a little of your life-blood drains away." -- Village Affairs, Miss Read
This post is a very personal account of a journey of pain and birth and death.
It has been recorded in other places, so I'm not violating anyone's privacy. I am publishing this for our own therapy and on the chance it will help someone else on a similar journey.
"It's not what you take, when you leave this world behind you,
It's what you leave behind you when you go."
