3 Years

What makes grieving so hard is that the pain never goes away.  I’m learning to live with the pain and grow around it, because it is the only way to have any sort of normal existence.  When Sarah’s heart stopped beating, the old me died too.

I wonder when we get to heaven, do we still have a heart?  Is there a new immortal, unbreakable and perfect version that beats with the pulse of heaven and warms our new heavenly bodies with the flow of love through our new and improved bodies?  In my imagination, I feel like we’ll be able to see each other’s hearts, if we have them.  Maybe we’ll have translucent bodies.  Will we be able to look into each other’s hearts and see all the wonderful things that fuel our spirit and fill us with love and joy.  Maybe there will be pictures or memories that we can see at a glance. 

However, my earthly heart is still so broken.  I feel like the band aid on the deep heart break of losing her rips off sometimes so easily-especially in September, and I can feel myself bleeding out.  It gets hard to breathe.  Then Jesus comes along and squeezes it back together and holds me for a while.  He gives me His breath of life and reminds me that He’s holding Sarah too.

This year on her heavenly anniversary I’m reminding myself that it was Sarah’s best day ever.  We don’t know how we’ve even made it this far, but here we are.  3 years closer to being together again.  I’m reminded often that if Sarah had to do it all again, she would.  I don’t think she fully understood the impact she was having.  The fire has been lit and we will not let the flames die.  The beauty of it is though, that even if only one or two of her closest friends realized how Jesus changes everything, she’d be willing. 

We commemorate this day by working with our earthly hands and aging bodies to build something old and something new because that is the heart of God.  To restore the places that have long been neglected or abused.  He’s a God of restoration.  A place where heaven will meet earth and the exact word that has been whispered to me so many times lately is that it’s a “Gate.”  Makes sense, doesn’t it?… A barn and a gate…go together so perfectly, but of course it does.  We know who’s writing this story.  We can’t wait to open those big sliding doors and let people in.  We all could use a lot more of heaven on earth and that’s exactly what God is getting ready to do. 

Wanna follow the progress of the barn? You can find them here: https://www.youtube.com/@kimtaylor2805

On the Edge of Two Worlds

I was casually listening to a sermon online, while doing some other stuff, when I heard the Pastor connect what he’d been speaking about to his own grief after losing his spouse. This always gets my attention. When someone has experienced a close loss, I always tune in to see what I can glean from their experience with grief. Anyway, his wife had also passed away from cancer, so that always connects my heart a little more, but he said something that resonated with me so strongly. He said that since his wife has passed he now feels like he’s living on the edge of two worlds. When I heard him say it, I looked at Chad and said “That’s it! That’s what we’re feeling!”

We can’t un-see what we’ve seen. We can’t ever go back to only thinking about the worldly, earthly, and temporary-not when such a big piece of our hearts has stepped across the threshold and now resides in the eternal. Honestly, I don’t want to.

Sure, grief sometimes clouds my earthly day to day thoughts and makes things “muddy,” but thank God that “grieving with hope” (1 Thessalonians 4:13) makes the important things eternally clear. You’ve probably heard me say, or I have expressed even here, I am weird now. Well, I’ve always been a little weird, but even more so now. I spiritualize everything. Is that good? Is that bad? I don’t really know, but I know that there’s new lenses that have been placed on my eyes and I don’t think I could ever take them off. I choose to see it as a gift that has come with a great loss. Everywhere I look I see that Jesus is the answer to every problem.

There are so many things in nature, that point to the eternal. God is such a creative God, but He also seems to love patterns and He loves to reveal more of himself to us in the ordinary, that’s not so ordinary, when we dissect the complexity of what’s actually in front of our face. I recently read the social media post (please note, I haven’t done a lot of research) about YWHW, which is the Hebrew name of God, being encoded in our DNA. This may be old news?…I’m a little slow…Whether this is verified or not, the more we learn about science, the more we are unlocking the mystery of our Creator. That’s one reason why cancer is so evil. It’s an attack on a person’s DNA, which was created and written by God Himself. The enemy may have access here in this broken realm, but one day He no longer will.

Thank God that Jesus came and defeated death. Thank God that He’s promised and foretold to us through scripture that a New Earth is coming and until then-we get to be with Him in Heaven. Thank God that I see in my spirit-and in the eyes of my heart, our Sarah, surrounded by so many other’s that we love that have also gone before us. They’re in the most perfect place possible. I fully believe that the business of heaven is about Jesus and we know that He is in the business of restoring and redeeming all that is broken and lost.

So, I’ll reside here…in-between these worlds for as long as He allows. I’m determined to be a part of the business of heaven as much as possible though. It’s the only thing that offers any sort of fulfillment for my grieving heart. You’ll just have to put up with my weirdness. Lol!

18th Birthday

It’s your birthday.  If you were still here, you’d be 18. An official adult.  I’m thankful that currently it feels impossible to me that this is your 3rd birthday in heaven. That means time is moving quickly for us right now.  Believe me, there’s been season’s where the days feel so long without you.  I still end each day with the thought that we’re one day closer to heaven and seeing you again.  I wonder if you’ve aged in heaven?  

A lot has happened in 3 years and as I watch your fellow classmates prepare to graduate high school and decide what’s next for themselves. Many people from our community are missing you. They are finding the sweetest ways to include you, Josh & Jesse. Grief has hit our little community hard and especially your classmates. The reminder that life is short and to make your days count has never been clearer. I’m so proud of your friends for continuing to grow and seek out their own gifts and dreams and I know that you have inspired them and are cheering for them as they make their own mark on this world.

Many people have checked on me and have let me know how they’re thinking of me during these milestone moments that the rest of the kids are experiencing.  I’m grateful for their thoughts and prayers, and I can honestly tell them, I’m doing ok.  Sure, I miss you terribly, but I have learned to let go of the expectations that I had made for your life.  Jesus gently has taught me that what He has assigned to you in heaven is so much greater than anything here on earth.  I know you are thriving and everything that God destined you to be, without the hindrance of this imperfect world.

Easter is also this weekend.  Holidays are hard without you, but Easter means everything.  When I was first asked to sing at church Easter weekend and realized it would be on your birthday, I felt a small gut punch-but then I could almost imagine what you’d say to me…”Mom!  You have to sing.  Easter is the whole reason why you CAN sing!”  Singing always connects me to what is happening in heaven and when we get to bring glimpses of heaven to earth-there’s nothing better for me.  On top of it being Easter, and your birthday…I’ve been asked to lead one of your favorite songs “Ain’t No Grave.” It’s one of those anthem songs for that season of our lives.  I have so many memories of us singing this song at the top of our lungs to and from the hospital.  I can feel it in my bones, when I sing and declare the words.  It’s my prayer that the Holy Spirit moves in a deep way to remind or even give people-maybe for the first time, that same glimpse of His resurrection power that He so graciously wants to share with us. 

My sweet girl, I miss you and my heart is still broken every day, but somehow Jesus binds it up and breaths His life over me and reminds me of His promises and then He equips me to get up and keep going.  There’s still work to do. God is still writing His story and we are somehow a small part of how He’s revealing Himself and awakening hearts again to overcome all that the enemy is trying to destroy.  Spoiler alert-God wins!  His victory is our victory and you know what, I can totally see you doing your victory dance.

Happy Birthday, Sarah Rose.  I know our love still transcends all of time and space.  So, I send you my love and can’t wait to squeeze my arms around you again.

Love,

Mom

Rebuilding

So, I’m a farmer’s daughter. I grew up doing chores-feeding livestock, bailing hay and straw, helping move livestock from one lot to the next. My brother would argue that I wasn’t always the best help, lol. I’m his little sister, so he always had to “out do” me right?! I was a 4H’er for several years and with some great help from my neighbors, I fell in love with sheep and caring for them. Springtime was glorious when it was lambing season! I loved bottle feeding the little lambs. I sure learned a lot about life and God’s creation because I grew up on a farm. My family continues to farm, right down the road and I’ve made jokes for years about our front yard being my “sheep lot.” Chad has never agreed. Lol.

Since we started GLOW Like Sarah and especially “Fire & Music” nights, I’ve been having a different dream for our front lot.  I’ve been seeing a barn.  Not just any barn, but one that glows and is filled with the sound of music and people, not animals.  A place that feels warm, inviting and safe. Safe for young people to come and ask questions, discover who they are meant to be, and be nurtured and cared for.

At first, Chad wasn’t having this same vision. That’s ok…I knew God would let him know when it was time and He did! Knowing ourselves well, we both struggled a bit with how we could build a barn and truly make it feel like “us.” We tend to like old things…things with character. Last fall we walked around the front yard as we day-dreamed about it. We got out the tape measure and discussed how big of a barn should we build? Flippantly, after measuring several different ways, I just said “I think it should be 50 x 40.” He just looked at me with a slight smirk on his face, but nothing was decided. We kept the dream just to ourselves for bit. We assumed a pole barn would have to do, but God has revealed a plan B-which of course, is really plan A in our dreams. We just didn’t know if it was possible, but hey, He’s the God of the impossible right?! Some dear friends happen to have a barn on some farm property that they no longer need, when we expressed to them our desire to have a barn for GLOW events, they offered it to us. We’ve been looking at old barns for bit, thinking we could salvage the wood to use on the inside of a pole barn, but this barn…it’s different. When Chad stepped inside the barn for the first time, he knew THIS was the barn. The structure is in pretty good shape. We think it’s about 120 years old. It’s a work of art and God loves to rebuild what has long been destroyed. We believe he wants to restore this barn and use it for His glory.

We began researching old barns and how to move them, dismantle them, etc….Hey, you can learn how to do anything on YouTube right?!  God is providing all the right people at all the right times, with the right tools and hearts for such a project.  Oh, and did I mention that when Chad measured the barn, it is 53 x 40?!  We know it’s not going to be easy. We know we’re going to learn a lot along the way. We also know that somehow this is part of our healing, but also the hope that we have for our community and this generation of young adults that has captured our hearts. God is drawing them to Him and His truth.

So, Colton Dixon has a song right now called Build a Boat.  After hearing about our project, a good friend shared with us that she now sings “I will build a barn” instead. Lol.  That’s how we feel.  We’re stepping out in faith and letting God lead us one step at a time to create this space…a sacred space.  It will be His to do whatever He wants.  We know He came in a barn the first time and we fully believe He wants to meet people again in a barn.  I think the Good Shepherd is going to meet us here often.  So, you could sort of say, I’m even getting my sheep lot!

Let both grow together until the harvest. At that time I will tell the harvesters: First collect the weeds and tie them in bundles to be burned; then gather the wheat and bring it into my barn.

Matthew 13:30 NIV
frozen wave against sunlight

Preparing to Let Go

To my friends who have recently lost or are preparing to lose their children…my heart is hurting for you.  This is not a time for platitudes and my words may mean nothing during this traumatic time and that’s ok.  I certainly am not the expert in how to prepare for such a loss.  I’ve walked a similar path, but no two stories are ever the same.  Your unique relationship with your child is precious and I know the thought of not having the tangible physical presence of your child takes your breath away.  Honestly, it still takes mine away at times, when I’m missing my girl.  I’ll offer some simple statements and pray that somehow you will be strengthened.

This is NOT the end of your child.  They are “arrows:”

Psalms 127:4:  Like arrows in the hands of a warrior are children born in one’s youth.

I wrote a blog about it here.  Our lives are not time-lines with an end.  You’re sending your child into eternity ahead of you, but they will live on with a future and a purpose. You will have more days ahead of you with your child in eternity, than you’ll ever have apart, if heaven is where you’re headed too.

I know you know this, but it’s worth saying….don’t wait to say what you want to say.  Soak up every minute you have left with them.  Hold them, smell them, look into their eyes and their souls and make sure they know how wonderful they are and how brave they have been.  No regrets.  However, it’s ok to leave the room for a minute.  In her last days, sometimes Sarah needed a break from me.  I had to respect that and give her time alone with other loved ones.  It was hard.  More often though, she wanted me right by her side and that time was precious.  We did everything possible to honor her and her wishes. 

Don’t take your eyes off Jesus.  I recently watched the end of season 3 of The Chosen series…spoiler alert here…They include the bible story of Peter walking on the water and they took some artistic liberties to connect it to the topic of Peter and Eden’s grief of losing a child.  Wow…did that hit me hard!  Losing a child feels so much like being in the boat in the middle of the storm.  Somehow, Chad and I have chosen to get out of the boat and just walk towards Jesus.  I imagine Sarah standing next to Him and His hands reaching out to us.  We want to go to him too, but our journey towards him is still full of things left here to do.  When I look at the waves and wind, I sink, but when I lock eyes with Him and remember who He is….somehow I rise above the storm.  He’s got you too, friend.  He won’t let go.  You will hear many people express that they could never imagine losing a child.  We can’t either.  We are living and surviving the impossible.  You can too. 

Your child will receive healing soon.  It’s disappointing that it’s probably not going to be an earthly healing.  It’s perfectly ok to get mad about that, but always be honest with God about your feelings.  He knows when you’re pretending and He can take it.  It doesn’t change His feelings towards you.  He knows what’s it’s like to give up a son.  He knows that you can’t see the end of the story yet.  Believe in your heart that you can trust Him with your child.  As hard as it is too imagine, He loves your child even more than you do.  Let that sink in.  Along with a heavenly healing comes so much more than we could ever give them here.  I have found comfort in realizing that there’s a lot of things that happen here that she will never have to suffer through because she is in heaven. She is protected forevermore and she is only experiencing complete and perfect love, joy and peace.  I believe it will takes us about 2 seconds in heaven to forget all the pain that this world caused.

I wish I could tell you that eventually the pain will lesson.  Over time you will learn to carry the pain differently.  You will get stronger, but it won’t lessen it.  You somehow grow around it.  One of the best analogies that I’ve related to is that it is sort of like having an amputation.  You learn to live a part from them, but not without them.   It’s not easy at all.   You’ll need help sometimes, but that’s ok.  Other parents who’ve lost children connect deeply with each other because not many people understand.   Reach out when you’re ready and you’ll be embraced. 

person marking his calendar

September

Oh September, how I despise you now.  Once, you represented a beautiful season of life to me, but now I dread seeing you on my calendar.  Once you were a month full of back to school routines, Labor Day fun, fall festival planning, and anniversary trips.  Now, the sense of dread I feel as you approach makes my stomach turn in knots.  I don’t usually feel such animosity towards things, but I can’t help myself as I am taken back to our loss and the day that my heart was torn in pieces.

How can it be 2 whole years without our girl?  730 days of waking up and remembering that she’s gone.  730 days… but her hospital bag is still packed and sitting by my bed.  It still feels like yesterday.  I’m still not used to being here without her.  I can’t imagine that I ever will be.  September, why was this her time to go? 

Her high school class is now seniors.  As I am starting to see all of their senior pictures and plans for their futures, it’s easy to celebrate with them, because they are all amazing young adults; but… it still hurts.  I wonder what she looks like in heaven.  730 days and I’ve only seen her once in a dream and she never looked at me or spoke.  I don’t think it was really her.  Other people have shared their dreams of her with me, which I am always so grateful for.  I just want to hear her giggle and say “Mom! It’s been 730 days without hearing her.

September, you always signaled to me that change was coming and this time you really meant it.  So much is different now. I was so comfortable with how things were.  I still can’t get comfortable with this new normal.  There’s no rest for a momma when her child is missing.  Sure, we try to fill our days with a routine, but something is always “off.”  This change was not welcomed and I can’t seem to adapt. All I can do is put one foot in front of the other and keep moving forward. Sometimes though, especially on September 5th, I just can’t.

September, you make the days shorter, but the nights are becoming longer.  I don’t like the night.  That’s when I miss her the most.  My eyes still fill with tears often as I lay awake and miss her and my memory still replays the trauma of our loss.  My favorite time is the morning.  I’m eager in the mornings to spend time reading and studying.  It’s also safe to turn on my worship music because Chad and Libby have to wake up any way. That’s where I feel closest to heaven.

September, none of this is your fault.  It’s just the way that it’s going to be.  I don’t know any way around you or September 5th…  If I did, I’d certainly take it.  I’m not sure how many September 5ths I’ll have to endure before I’m reunited with Sarah.  All I know is every night before I fall asleep, I tell myself I’m one day closer to heaven.  Until then, I’ll keep asking to dream about her and I’ll keep looking for ways to remember her all year long, not just in September. 

Sausage Burrito

When you’re grieving for someone that you lived with–someone who was part of your “normal” every day living, for a while it clouds every aspect of living. It’s as if you go through the motions, but the “inner” you is watching life go on– all the while screaming “This isn’t right!…None of this is normal or ok…..Stop!”…..Sometimes you do stop and give in to the tantrum, but sometimes you manage to ignore the cry of your heart and push through. I suppose we do it for the sake of others. It really is a terrible thing to make others sad just by being around them. Other times we push through because we know we need to find a way to live the new normal—to try and find moments of reprieve from the cloud, to not be so far inside our heads that we miss this life that is still happening all around us. So, we manage to have moments of living, but not without some serious effort and a constant loss of innocence that taints every good moment. There’s always the realization that those moments can be gone in a flash. We are never guaranteed another tomorrow. I’d like to say that makes me appreciate the good times more, but sometimes the bitterness wins and I just feel cheated. Regardless of the bitterness, I know better than to carelessly let a moment pass without recognizing it’s importance. That’s the problem of grief, it makes every normally menial task somehow seem important.

In my grief, I try to find ways to connect and honor Sarah even in my every day moments. Maybe I’m holding on to tightly. Maybe, at this point, I’m just hanging on. However, I know that when I find a way to include things that meant something to her, it makes me feel better. Today, I ordered a breakfast burrito from McDonald’s and stuck the round “sausage” sticker in a funny place. She did that to me all the time. I’d find them hidden in the funniest places. When I’d find them, she’d laugh so hard and was so proud of herself for being so clever. Today it made me smile to remember her sense of humor. Tomorrow, the same memory may make me cry. I have no way of knowing which one it may be. That’s ok. I’ll still find a way in the “new” normal of my day to connect and remember her. If the tears come, I’ll let them. After all, their only purpose is here on earth and their days are numbered.

The Pandemic of Grief

Friends, we are in a season of grief. Every week, there is loss. Because of COVID almost all of us have experienced the death of a friend, family member, or at the least you are hearing stories of acquaintances who have passed away. Many of these are seemingly healthy people, prior to contracting COVID, and sadly they are people who seemed to still be in the prime of their life, possibly with young children. I don’t feel led to address any stance on COVID precautions. We all know the tools that are available to help us fight this horrible pandemic. I’m also not trying to spread fear. At this point, we also know the risk of COVID. I simply feel led to address the topic of grief and loss and its hard to deny the increasing number of folks who are joining the “grief club.” In a way, it’s becoming a pandemic itself. It’s shocking and heartbreaking to see so many families hurting and I can’t help but contemplate the effects of grief on our current society. Realizing that everyone’s grief journey is different, I do think there are a few things that I have learned on my own journey that I’d like to share.

Grieving people will never be who they were before their loved one died. Losing a loved one causes you to lose a piece of yourself and I’m convinced that it’s a piece of your heart. I remember the person that I was before Sarah died, untainted by death. I laughed more, I focused better, I slept better, I ate better, and my priorities were different. I may not seem different to many of you, but to my family, they can tell. There’s an innocence’s that is lost when death steals away someone that you love. It’s as if the unthinkable actually occurred and there is a distrust of statistics and reasoning. I give no weight to percentages now when I hear them used to minimize a risk. I just can’t help it.

Grieving people need space to just be. Don’t expect them to attend family functions or keep appointments regularly. Sometime, even in route to something planned, a wave of grief comes out of no where and just paralyzes me. Please give grace to those who are adjusting to a new normal. Grieving people often just feel sick themselves. The aches and pains of grief can make you feel like you’ve ran a marathon or even have the flu. The lack of sleep can also cause a grieving person to feel less than themselves. If you’re grieving, some days it’s OK if the most that you accomplish is getting out of bed and doing some self-care, like eating, showering, or taking an extra nap. Grieving people need time to work through the trauma of their loss-some more than others. If you are a friend, co-worker, or supervisor of someone who is grieving. Please give them some margin. Sooner or later, you’ll be in their position of grief too.

Grieving people need to know that you are available to talk about and remember their loved one. Please don’t be afraid to say their loved ones name and share memories or special things about their person. I realize that this may cause you to be concerned that you may upset them or make them sad, but honestly they already are both those things. They may actually need someone one else to validate their loss and feelings. It’s more hurtful when others do not acknowledge the loss that you feel. Tears are not always an indication that a grieving person is having a bad day. Sometimes tears are exactly the thing needed to have a better day. Trust me when I say that is a gift to them to even just speak their name. There are exceptions to this rule. So, don’t be too pushy and just follow their lead after you mention their loved one.

Grieving people need forgiveness. That’s right. I said forgiveness. Grieving people will not always make the right choices. They will do things that are hurtful, selfish, impulsive, irresponsible… I could go on and on. You see, the hurt is heavy and grieving people are just trying to stop the hurt, hide the hurt, or forget about the hurt for a while. Grief shouldn’t entitle us to hurt others on purpose and there are consequences to bad choices, obviously. It’s ok to set boundaries with a grieving person, if they are not respecting you. However, just be aware that extra grace is needed when maintaining a healthy relationship with a grieving person. Watch for indications that professional grief counseling may be necessary and encourage them to seek further help.

Grieving people need Jesus. I follow different types of grief support groups on social media. There are some grief support groups that do not tolerate any sort of faith-based approach to grieving. It honestly is so dismal. I’m even more confounded by it because most will admit that their loved one is still a spiritual being. They believe that their soul/spirit has moved on somewhere and they may even believe in heaven, but they will not acknowledge Jesus. Friends, Jesus is the only one to defeat death. He is the key to heaven. He is the way, the truth, and the life. Unless we humble ourselves and accept His payment for our sins, we will not receive eternal life in heaven. Submitting our lives to Him, not only gives us the hope of heaven, but it provides joy, peace, and purpose for us now, here on earth.

Even on my darkest day, I can know, because of Jesus, that I will be reunited with Sarah someday. Even on my darkest day, I can know that the Holy Spirit will comfort me and give me strength to endure the sadness. Even on my darkest day, I can still feel joy. I may be sad for myself because I miss Sarah, but I can know that she is experiencing pure joy and happiness. Even on my darkest day, I know that death has been defeated and one day, it will not exist. God is patient, but there will be a day that every knee will bow before Him and every tongue will confess that He is Lord.(Philippians 2:10-11) If you’re still not sure about Jesus, I encourage you to research Him for yourself.

What Would I Change?

As the 1 year mark of Sarah’s entry to heaven is here, I’ve found myself reflecting a lot about our journey. I think it’s normal to question our decisions that we made, as they pertain to someone that we’ve lost. Honestly, when you’re grieving, thoughts of your loved one are never far, but I’ve been specifically taking a more detailed walk down memory lane. Sometimes that’s good and sometimes that’s not so good. All the hard memories are still so fresh and raw in my mind. I know that we’re through the worst of it and the important thing is that Sarah is healed and whole now. She is ok. However, I still found myself contemplating what should we have done differently, if we could go back in time?

Obviously, the first thing that I often wonder is if I should have taken her to the doctor earlier for her pain. There was nothing visible or any physical limitations that she was experiencing. She would take some Tylenol because her shoulder ached and then wouldn’t complain again for another couple of weeks. It was just so intermittent and never seemed that intense, until it was. That’s when we decided to go to Riley. Maybe it’s just me justifying my decision as a mom, but if we would have gone sooner, would it have changed anything? Maybe, I guess we’ll never know. What it would have changed, if we had gone earlier, is that she would have been pulled from school and the life that she knew. Some of her most favorite high school memories happened in the weeks before her diagnosis. She was a freshman in high school and finally gaining some independence from mom and dad. She attended the RYLA conference, an FFA retreat, FFA convention, which honestly I know gave her courage for what was about to happen. So, it’s very hard for me to imagine how different things might have been had she never had those experiences. She made some really special friends during those events and matured as a person.

Should we have sought treatment somewhere else? Sometimes families that are fighting pediatric cancer end of traveling very far to receive treatment. Sometimes they end up in New York, Texas, or at St Jude’s in Tennessee, or even other hospital’s across the nation. There were times when we questioned treatment options, but we also knew that Sarah’s Doctors were consulting with other doctors about her case in some of those very places. If we would have started treatment at another hospital, I feel like the strain on our family would have been even greater, especially during COVID. I know that the relationships that Sarah made at Riley were precious to her. She felt loved and cared for by her doctor and nurses. The protocol would have been the same at any other hospital- as they all follow a plan that is devised for all of the pediatric oncology units that are networked together. Again, we could always wonder if another drug or chemo combo would have worked against her tumor, but that same chemo could have made her life a living hell. What we tried, was tolerable, until it just wasn’t effective. I completely understand why sometimes cancer patients refuse treatment and just decide to live out their days. I feel like Sarah was still able to be herself and enjoy some quality of life, despite being so sick.

Should we have brought her home for her final days? I don’t think about this one very long. I absolutely feel like we did the right thing staying at Riley through the end of her life. Although the moment that Sarah went to heaven was very sacred, I am thankful that I don’t associate that memory with our home. That was just our preference for our family and for Sarah. Our immediate family was allowed to stay in her room 24/7 so that we could all be together. Sarah appreciated that. She just wanted the 4 of us to be together and we were. We knew that her pain medications and oxygen needs were going to change drastically. So remaining there meant that we had quicker access to the help that she needed. Even the greatest hospice provider can sometimes struggle to support families in rural areas and honestly, pediatric hospice care is quite unique. Her healthcare team went above and beyond to honor and care for her during her final days. They actually still do. Several of them attended her Celebration of Life and I still receive messages from some of them. I have so much respect for the whole Hem-Onc unit. After all, they fight the cancer beast for kids every day. It’s such a hard job, but thank God that they feel a calling to do what they do. I’ve honestly heard several of them say that they absolutely look forward to the day that their unit is no longer needed. However, until that day, they are there for “their” kids and the people who love them.

Maybe, the one regret that I have is not getting Sarah’s Make-A-Wish going sooner. Honestly, she wasn’t sure what she wanted to ask for and COVID really slowed down the whole process. Also, we would have risked a delay in her treatment had we attempted to travel or even spend a day out of the hospital. Ultimately, she decided what she really wanted was to sing and hang out for a bit with the Elevation Worship team from South Carolina. We were in the process of trying to set-it all up, but we simply ran out of time. However, a few days before she passed, she actually received a couple of very special video messages from 2 of her favorite Elevation Worship Team members. She was so excited to know that they were praying for her and were inspired by her faith. It meant so much to her! God totally arranged for it all too because the Make-A-Wish had nothing to do with how she got the messages. He’s good like that. Actually, as I think about this wish of hers for the ultimate worship concert, I’m reminded that she is living out this wish for all eternity now. That makes me smile.

So, would I have changed anything? My answer is probably-no. It all played out like it was supposed to. I know that Sarah’s quality of life changed a lot with her cancer diagnosis, but she was still able to be herself and find joy in her relationships, new and old. I’m sure the “What if’s” will not completely go away and that’s ok. I just can’t let them dominate my thoughts. So, I’ll choose to replace the “What ifs” with the “What nows?” and just keep moving forward trying to do the next right thing to honor her and her memory, until we’re reunited some day.

Things I’m Learning…

I’ve been feeling quiet in my spirit. I know it’s because I’m processing so many things all at once: it’s almost been one year since Sarah’s death, trying to parent and support a 14 year old who is also dealing with grief and so much change. Changes in our church family, good friends moving away, and trying to discern what God is calling me to do next as a job, etc… In many ways I feel like I’m waiting. While I wait, I am enjoying the freedom to grieve as I need to. I’m not going to lie, the gut punches have been hitting me hard over the past couple weeks as I’ve been missing Sarah and reminded of where we were one year ago and our journey to the end of her life here with us. It’s been especially hard walking into her room, seeing her things, and thinking about the beginning of school and how she should be enjoying being a junior in high school. As grief continues to demand it’s own attention in my life, here are a few things that I’m learning a long the way:

  1. Not everyone will be comfortable around you like they used to be. Sometimes it can make conversations feel awkward as people are unsure how to approach you. Depending upon my particular mood for the day, some days it’s easier to approach others first and just act normal, but somedays I know that I shouldn’t. It’s hard knowing that when people see me, it makes them feel sad. It’s not anything that can be helped.
  2. You can laugh with anyone, but it’s only your best friends that you can cry with. We know that someone has reached a special place in our hearts when we’re comfortable letting out our deepest emotions. I’m thankful for friends that I can be real with, when I need to be.
  3. I look for “signs” from Sarah everywhere. There has been some really special ways that she has been with us lately…like the amazing “angel” figure in my vacation picture. I hope I never stop receiving them. I still haven’t had a real vivid dream with her. I still ask too, but God knows best about how to minister to my heart. So, I’m going to trust Him with it.
  4. When you’re grieving, it’s very easy to let feelings of jealousy and bitterness rule in your heart. I have to be honest, it’s hard not to compare what could have been, when I see FB posts about other kids hitting milestones. Sometimes, very negative thoughts cross my mind as I read comments from mom’s who are missing their children who have just moved away or when someone complains about something very trivial. That is totally normal for me, but it’s also not ok for me to NOT submit those thoughts to Jesus and let His Holy Spirit set me straight. It would be hurtful for me to not acknowledge those feelings, but it’s more hurtful to let those kinds of thoughts rule in my heart. I need to have grace for others. The reality of it is, that I wouldn’t wish this kind of grief on my worst enemy. So, it’s ok if others live in a space where they don’t have to consider the things that I do. I’m learning what posts to just scroll over and sometimes, I just need to stay off of Facebook for a bit.
  5. Sleep is such a precious thing. Lately, I’ve been waking up in the middle of the night again. It’s so frustrating! I know that when it happens, the more I try to force myself to go back to sleep, the harder it becomes. So, I just try and find something good to meditate on; or I just bare my soul to Jesus, if I’m struggling with anxious thoughts or trauma.
  6. Worship still is the thing that connects me to Sarah more than anything and most importantly, Jesus. I know that when I worship, it’s like a little taste of heaven. As much as I miss Sarah, Jesus is the only thing that can fill the emptiness in my heart. He understands my grief, but he truly is the only one worthy of our worship. Worship while were suffering is life giving. It is the way to truly activate His strength in our weakness…which leads to my next point.
  7. I’m learning a lot about the biblical theology of suffering. Yeah, I know…that doesn’t sound very exciting. However, we know for those who do not believe, many times it’s because they can not accept that a loving God would allow for pain and suffering of those He loves. I’ve discovered an author, Rebecca McLaughlin, Confronting Christianity & 10 Questions Every Teen Should Ask (and Answer) About Christianity, who has some very helpful insights about this. First of all, if you’re looking for logical answers about theology, I highly recommend her books. The one directed towards teens is superb and actually quite helpful, even as an adult. She takes on almost every culturally relevant issue and has a fantastic way of explaining correct theology, with grace and love. Anyway, back to suffering. She uses the story of Lazarus to make some very keen points in regards to suffering in both books actually. My quotes will come from Confronting Christianity:
  • “Sometimes we call for Jesus and he does not come.”
  • However, “If Jesus had only come when he was called, no one would be crying.” and we wouldn’t have the verse: “Jesus wept.” John 11:35
  • “Jesus does not just feel sorry for us in our weakness and pain. He takes on that agony himself. ”

“He was was despised and rejected by mankind, a man of suffering, and familiar with pain…Surely he took up our pain and bore our suffering…”

Isaiah 53:3-4
  • In the story of Lazarus, “Jesus knows the resurrection is coming. And yet he cries out in his distress.” He bears the heartbreak of our suffering. “Pain is a place of special intimacy with him.” When we go to Him in our sorrow, we find understanding, comfort, and hope.
  • When Jesus does arrive, he doesn’t automatically fix Martha’s problem. Jesus looks into this grieving woman’s eyes and says: “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?” (John 11: 25-26) He wasn’t just talking about Lazarus to Martha. He was talking about Martha herself. It’s as if he was saying to her, as she was longing to have her brother back, “your greatest need is not to have your brother back again. It’s to have me…He himself is life: Life in the face of suffering, life in the face of death.”
  • Our suffering is never an indication that God does not love us or that we’re being punished. Time and time again, in the pages of The Bible, we see those who are “chosen and beloved suffering. When Jesus comes, we see that script played out on a cosmic stage: God’s beloved Son, the One who the Father is well pleased, comes expressly to suffer and to die out of love for his people. Indeed, our beliefs about God and suffering expose the fault lines between our natural assumptions and the biblical narrative.”

I have no affiliation with Amazon for sharing, but if you’re interested in reading Rebecca McLaughlin’s books, they are available on Amazon here. I highly recommend them!