It’s been 15 days. Most days we are ‘ok’ but, there’s not a second that things don’t feel wrong. We feel like we are supposed to be parenting yet, there’s no one here to parent. I should be making snacks, packing a diaper bag, arranging a baby sitter, reading books…….but I’m not. It’s only been 2 weeks and I have no idea how I’m going to live the rest of my life without her.
Grief. It’s a weird emotion. We all know there are stages. Denial. Anger. Bargaining. Depression. Acceptance. We’ve been grieving in one form or another since our life changed on May 18th. It cycles over and over, sometimes all in one day. We grieved our old life, our child’s innocence, our relationships with everyone else in our life, and our little bubble of happiness. Then we kind of got acclimated to the cancer/hospital lifestyle and it started to feel normal. A new normal. We had resigned to that being our life and we were going to handle it because we could do this if it meant she’d be ok. We could put our life on hold for 3 years and get her through this.
Then August 7th and relapse happened. Again we started grieving. We fought HARD that month to keep her alive and then we watched as the horrendous rescue chemo took all of her independence away. So again, we grieved-her voice, her walk, her playing, her moving on her own, sitting up, eating, drinking….. we grieved as it all went away. Then YET AGAIN we started adjusting to a new normal. Chemo, speech, physical therapy, occupational therapy, massage therapy, mouth care, feeding tubes, new meds…..all became normal. And finally, another relapse and then she left.
Grief has taken so many forms since January 4th at 2:11PM. It looks like so many things and I quite honestly don’t have the energy to put them into full sentences so, I guess a list will have to do. What does grief look like? It looks like…..
-Holding her for the last time because it’s time to lay her flat
-Giving the last bath and putting on lavender lotion because it’s her favorite
-Signing partial autopsy permission forms
-Writing ‘mom’ next to relationship to patient for the last time
-Leaving her in a room alone and walking out of the hospital
-Leaving her giraffe with her so she’s not alone
-Picking out clothes, Crocs, a bow, and what we wanted in the casket with her
-Laying on the kitchen floor crying because her pictures are on the fridge
-laying her Mattress on the floor and trying to find her smell
-Cleaning medical supplies out of the bathroom because you can’t stand to see them anymore
-Being in the funeral home building at the same time as her but not being able to see her
-Watching my husband fall apart over and over as we sit on the bathroom floor together
-Getting enraged at really dumb stuff
-Irrationally hating everyone with healthy kids
-Sniffing everything trying to find her smell- pacifiers, toys, blankets…..
-Sleeping with 2 blankets and a giraffe because they were hers
-Carrying the pink blanket all over the house with me
-Eating once a day and losing 20 pounds because you’re constantly nauseous and at the same time hungry
-Feeling like you should be parenting but you can’t
-Knowing no one has a reason to call you mom anymore
-unfollowing every mom blog that you’ve gotten advice from for 2 years
-Not leaving the couch all day
-Not being able to watch them close the casket
-Your arms ache because they’re empty
-Resenting everyone for going back to ‘normal’ when your life is still blown apart
-Reliving her death over and over and seeing her laying there perfect and still
-Praising the Lord for her freedom while crying out for her to come back
-Worshipping
-Sitting in the shower to cry
-Standing in front of hundreds of people and giving your child’s eulogy
-Seeing her everywhere-her hoodie towels in the cabinet, her raviolis in the pantry, and her dishes in the kitchen
-Laughing because it’s ludicrous that you’re sitting on the couch at noon instead of at work or the hospital
-Feeling like you’ve moved away because you miss the hospital and the nurses
-Doing stuff you hate because she did much worse for 8 months
-ignoring your phone for days and days
-Having no purpose because your full time job for 8 months is over
-Laughing with friends then feeling bad about it
-Falling asleep on a couch in a room full of 30 people
-Letting your friend’s 2 year old fall asleep on you watching Mickey because you’ve missed it so much
-Sitting at the cemetery, alone wondering how in the world this is your life
-Relearning how to be married full time
-Seeing a Trolls alarm clock at Kohl’s and losing it
-Getting a ‘mommy and me class’ flyer in the mail and sitting on the curb by your car sobbing
-Aching for a baby but, knowing you just want your baby back
And a thousand more things that pile up each day
I wish I had a redeeming moment to add to this. We aren’t just sitting on the couch crying all day but, we are sad everyday….all day. There’s moments of happiness in our days but, still we are sad. It feels wrong to be here. Every part of every day feels so wrong. My arms physically ache for her. My husband can’t stop watching videos and looking at pictures. We are broken.
BUT GOD IS BIGGER. BIGGER THAN CANCER, BIGGER THAN GRIEF, BIGGER THAN US.
Today, Jonathan opened his Bible and it opened to Jeremiah 31 and its there that I’ve found hope today. While we are oppressively sad and crushed by the weight of her absence….there is still the promise of joy. There’s hope in what’s to come. And for now, we try to….yet again….find our new normal and continue through the process of grief.
Jonathan and I are getting on a plane tomorrow and heading to California for 8 days together. We are packing those days full or touristy activities, food, shows, shopping, and marriage. Please, if you think of us, be in prayer for safe travels and for true connection with each other. Please pray for our broken hearts and for peace that can only come from Jesus. Pray for God to show us ‘what’s next’.
Sophie The Brave 
Praying for you!! Our 6yo daughter prays “for Sophie’s family that misses her” every night…my tears were flowing reading this post with your list of what grief looks like…we have 4 babies in heaven that I prayed were welcoming your beautiful, precious daughter…God IS bigger, and He can handle your sadness, your fear, your anger, whatever… don’t let anyone ever tell you how you should be grieving…you ARE still a mom, and a Mom that fulfilled God’s will of leading her child to heaven…my heart aches for you, sweet mama!!
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My prayers continue for you and Jonathan. I think of Sophie most everyday. I still collect the tabs from the coke cans and tonight my husband asked me why, I said I guess someone still needs them. I pray that you guys have a wonderful trip and find many things to laugh about. Something tells me Sophie would love to know that her Mommie & Daddy are going to be ok. You guys are such an inspiration. 🙏
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Yes! Grief is so hard to explain to people. I don’t even try because I hate seeing the look on people’s faces. I can definitely STILL relate to being angry because people are going back to normal when my world feels broken. Wondering why other people get to keep their dad, when I don’t, fills me with so much anger…especially when they don’t appreciate them. Wondering if it ever gets easier. Seeing the last time you saw them over and over. Breaking down randomly and trying not to let anyone see you ugly cry. Please don’t take this as comparing my grief with yours because I don’t even know how to imagine your loss, but I know grief. I know how it comes in waves. I know it comes even when you sleep. I know how it feels when everyone stops telling you they are praying and move on with life… when you are stuck in a moment that shattered everything you knew. I am praying for you. I pray for you every time I think of you. I will continue to pray for you. Love you, sweet friend.
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My child was was with us for nine months inside of me and eight hours out in the hospital world. And although I can’t expect to understand your experience and suffering, your words take me back to those days of hope and grief. One that stands out was not being able to comprehend how the world could go on as normal when my world was anything but normal. I prayed for a healing for Sophie. I am now praying for your healing. And although you are forever changed and cannot go back to what you once were, the bad days will get free and farther apart and you will find joy in life again – and it will feel right. I love you both. May God hold you. I know he is. Patti, still mom to Adriana
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My apologies for the typos. I am sending again.
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My child was with us for nine months inside of me and eight hours out in the hospital world. And although I can’t expect to understand your experience and suffering, your words take me back to those days of hope and grief. One that stands out was not being able to comprehend how the world could go on as normal when my world was anything but normal. I prayed for a healing for Sophie. I am now praying for your healing. And although you are forever changed and cannot go back to what you once were, the bad days will become fewer and farther apart and you will find joy in life again – and it will feel right. I love you both. May God hold you. I know He is. Love and blessings,?Patti – still mom to Adriana
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My heart truly breaks for you and your husband. I am also inspired by your faith in God. In believing he has a plan. You are a lot stronger than you realize. I pray for safe travels and for you and your husband to find your new normal. I pray for peace and comfort. I so wish I had the magical words for you to make everything right in your world. I am so sorry. God bless you both.
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There are no words, so I won’t pretend there are. I pray you feel God every single day as you face this horrendous challenge no parent could ever be prepared for. I pray Sophie gives you signs that she’s ok. God bless you both with more strength and knowledge that many prayers continue.
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Praying for you two. May God restore your love, your hope, and your freedom to feel joy.❤❤
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My heart aches for you and Jonathan. I will be praying for you everyday. God is bigger ❤️❤️❤️
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Shelby, thank you for journaling your life for us. During the time Sophie was in care, I decided to volunteer at a children’s hospital in honor of her. Every kid that I see reminds me of her. It’s in her honor that I give every cuddle, talk in weird voices to make kids laugh, play games, and comfort the kiddos through their tears. Sophie’s life is so much bigger, partially because you’ve shared her journey. It gave me the opportunity to love her in my own way, even if I’ve never met her. What a beautiful little girl you and Jonathan made. She’s inspired so many people and I think about #domoreforSoph daily. It keeps me motivated. I’m so thankful that God gave Sophie to you and Jonathan. You’re an amazing person, and a truly amazing mom. While you get used to the “new normal” and living through each day, I am praying for you and your family and we won’t stop. God has amazing things for your life and I am actually excited to see what’s next. I hope you and Jonathan have a great time in California. For me, hiking is extremely therapeutic, even if that just means walking trails. Blessings to you and Jonathan.
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I’m praying that your days in California are filled with love, joy & freedom to feel both. God is bigger!! He understands your grief, anger & all the emotions you are going thru. I pray that you will write Jeremiah 31:13 on your heart & find your new normal. 🙏💕🙏 May God continue to bless you & keep you until then. Numbers 6:24-27
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Continued prayers for you and your family. You have shown such amazing grace and love for God during this battle and loss of your precious daughter. Know that we grieve with you in your loss and we don’t know each other…just friends of friends BUT we are family in Christ. Thank you for sharing your journey, your faith and Sophie with the rest of us. We have no idea of Gods plan or how you story will impact others. Have a blessed trip and know that we continue to lift you up in prayer. Our God is a Mighty God, full of Mercy and Grace. Praying for peace and comfort as you press into the days ahead.
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My heart and prayers are with both of you.
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Praying for you constantly. I honestly have no words. I know I would struggle to breathe. Xo 💜
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I have no words Shelby. I am so sorry that y’all are having to go through this. We are constantly praying for yalls broken hearts. We will be praying y’all have a nice getaway 💗
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No words we write can console the pain you feel. You and Jonathan are so strong! Sophie was Brave but she got that from the love you and Jonathan have for her.
GO enjoy your 8 days and know that Sophie wants that for you more than ever!
#SophieTheBravestOfBrave #MomAndDadTheStrong
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God Bless, you are in my thoughts and prayers. And for safe travels. My heart aches for you both.
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Just praying 🙏 for you guys there are no words to comfort or bring you peace and acceptance
Just God will put everything in place
He is beyond our thoughts and faith.
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GOD BLESS YOU BOTH ON YOUR TRIP TO CALIFORNIA. SOPHIE WILL ALWAYS BE IN YOUR HEARTS. YOU WILL ALWAYS MISS HER PHYSICAL BODY, BUT HER SPIRIT WILL ALWAYS TRAVEL WITH YOU BOTH. AFTER ALL, YOU MADE HER WITH YOUR LOVE.
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No one can help u through grief. God has a plan for your life as u go forward. It has been 36 years since I lost a 13 month old daughter. Life will never be the same. But God will give u strength and the memories will keep u going. There won’t be a day in your life that u will not think about her. Here is a poem that was a blessing to me:
Rest In Peace; Little Angel
When God calls little children
To dwell with him above,
We mortals sometimes question
The wisdom of His love.
For no heartache compares with
The death of one young child
who does so much to make our world
Seem so wonderful and mild.
Perhaps God tires of calling
The age to his fold,
So he picks a rosebud, before
It can grow old.
God knows how much we need them,
And so he takes so few
To make the land of Heaven
more beautiful to view.
Believing this is difficult,
Still somehow we must try.
The saddest word mankind knows
Will always be “Good-Bye.”
So when a young child departs,
We who are left behind
Must realizeGod loves children
Angels are hard to find————
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Dear Shelby and Jonathan, you both are an example of immovable faith for me..
I’m from Argentina and I’ve been following Sophie’s story about 5 months ago..
I pray for God to comfort you and help you to carry on ..
I can’t imagine everything you’ve been trough, but there’s someone who knows all things, and He is within you. .. May God be your refuge and strength. .
Love you in Christ. .
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All these things…so true. Brings back such pain to me…our 24 year old daughter went to be with Jesus on feb19, 2016. It still hurts as much today as it did that day and I still re-live moments in my mind…especially when I lay down to sleep, my mind is just flooded with sadness. I praying for you as you get away, nothing will take away your pain, but the verse you found…it is indeed true. If not for the promise of everlasting life with Jesus, I could not go on each day. I long for that day in Heaven when I see Kalyn Rae again, but until then, I do my best here. It’s hard. It’s real hard. My first grandbaby is named Sophie, I think that Kalyn probably let you Sophie at the gates and welcomed her in. Kalyn was the best aunt here on earth, I’m hoping she finds a little connection with your Sophie.
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Dear Shelby. Keep writing your heart out whenever you feel the need to. I read every one and must confess the last two writings I had to
Stop reading and come back later. My heart was filled w such profound sadness and despair. My mom many years ago lost a brother to leukemia He was 4 and I was 6. I have many memories even though I was so young. Your list made me recall many of them. Mommy and daddy crying, family in and out, lost, saddened, holding on to each other to do what they could to exist. Tears have fallen even years later.
God makes decisions that baffle us forever. Sophie is one of them. My brother Frank was another.
I pray constantly for you and Jonathan. I would give up a day of happy for you and your husband to have 10 minutes of peace and normalcy, but I can’t so I will pray and pray until god hears me.
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Yes this is exactly what grief looks like. I thought I was..the only one searching everywhere for a scent, irrationally hating people with healthy kids and people older than me with healthy parents
*Backstory: i lost 2 babies…daughter Callie to miscarriage, son Dylan much later in pregnancy, + my mom & best friend to cancer 2 weeks ago- Easter Sunday
Grief is sobbing again because someone said something so sweet about my mom
Having to lay her there…not leaving until the funeral ppl come because after she passed her hand was still clasped to mine…and I didn’t want her to be alone
It’s crying while I write this
It’s my husband finding a new mom (we are married 1 year) loving her immediately and losing her
Feeling guilty when laughing at something on tv or that a friend said
Taking a clipping if her hair for my memory book…she had one of mine in my baby book
Anger at my body that I didn’t give birth to a living child before she passed…
But knowing she is holding and loving in Callie and Dylan and I will see them all again…
Feeling angry at cancer
Talking to her out loud kniwing she is listening
Wondering as you said how this became my life…
Knowing God does have a plan…
Tears at random things and times
And so much more….
Thank you Shelby for your writing…God has given you a true gift…your description if what grief looks like is so similar and made me feel not alone…losing my babies was very hard…then my mom got one of the most aggressive cancers (pancreas) after 3 good scans post surgery and chemo it had spread to her liver and continued to spread rapidly. My Aunt took her baby sister (@ 10 years older, aunt always my sweet mamas 2nd mom) moved her into a beautiful room in their home for her palliative care…surrounded by me, my husband, brother my aunts, uncles and 2 very close family friends- my brother playing her favorite song on his guitar- my mom took her last breath…gaining her wings 4/1/2018 at 11 am. I wish I could remember the songs name at this moment…it is about thanking God for the beauty in nature…my mom loved and appreciate every “litttle” thing….the beauty outside her window” the sun across her skin, a hug from a loved one.
Thank you….you have let me know what I am going through in grief is normal. Thank you for sharing your beautiful daughter with us. Thank you for reaffirming my strong faith..well i admit I questioned God during this, I suppose that is normal…I am lucky to have a very supportive husband who believes in God.
Grief…can be so draining in the early days, just feel exhausted at times.
I am praying for your family. I’m praying for Abigail, Jase, Addie and the others at the hospital.
I love Do More for Soph. I want to do something similar for my mom Deborah. Since I lost Callie and Dylan I have raised awareness on pregnancy and infant loss, now I want to do more for Mom (or Deb as her sisters and friends liked to call her) I have many things planned….a series if poems, her memory book, donate something like you did for child life is great, raise awareness, write as well….and I know Mom and my angel kids in Heaven don’t want me to stop living….even though I have days I spend in bed in tears…I an going to live the best life I can, with them, God, my husband and loved ones ar my side.
There aren’t adequate words…I’m so sorry….and Thank you. I can’t thank you enough for the impact your blog has had in me….how it made me feel not alone. God Bless you and your family. 💕❤
Ps. Apologies for. accidental typos…it is late as i write this…the insomia of grlef
All my love
.Emily
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