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. 

overhead view of white pumpkin in wicker basket

Numb

Grief has a way of interrupting so many things in my life.  So excuse me, for not always making my thoughts flow well and with clarity.  You see, my brain is still sometimes foggy and my memory is terrible-except for the stuff that I want to forget, but I can’t.  I have no concept of “real time.”  I walked around for a few days saying that Chad and I would be celebrating 26 years of marriage…until a friend corrected me and said, “Ugh, isn’t it 28?”  She was right.  In many ways I feel like I’ve lost 2 years of my life.  People that know my story have been so gracious to me in so many ways, but I’m sure there have been many a stranger that thought I was either on drugs or just plain crazy.  I sometimes have no memory of completing task or managing responsibilities.  Somehow, with God’s help, things have gotten done and I haven’t completely wrecked our home. 

I wish I could get motivated.  Motivated to care about things like:  being organized, cooking for my family, cleaning (no worries, I do shower and de-clutter occasionally), exercising- or even just being health.  I used to love to work out.  Now, I just don’t care.  I wonder if I will ever care about such things again?  Poor Libby…I miss every parent deadline, permission slip sign-up, volunteer opportunity, and am terrible about getting events on the family calendar that she’s involved in.  At home, I literally am taking it one day at a time.  I’m thankful for a husband and responsible daughter who understand and help out with the household. 

I’ve decided the best way to describe this stage is that I’m just plain numb.  I don’t want to feel right now.  I don’t want to feel sad.  I don’t want to feel happy.   I don’t want to feel anything.  So, I don’t.  I react to life’s situations, but only on the surface.  I know that I’m guarding this fragile heart of mine, while it’s trying to heal.  This is probably the place where some who are grieving may find ways to help them stay in the state of numb by turning to substance abuse.  I’m not enticed by that option for several reasons, but I certainly understand how someone may go there.  Unfortunately, that path leads to more loss and just starts a cycle that is so hard to break.  It’s a trap. If you’re stuck in that cycle. Please ask for help.

I’m not so numb that my emotions don’t occasionally break through.  So, I guess that’s a good thing.  I have moments where my tears come hard and fast.  It hurts.  It hurts like hell.  The band-aid rips off my heart and it falls apart again and I bleed.  It doesn’t last as long as it used to and it doesn’t happen as much, but it still happens.  I guess that makes me human. 

There is a comfort that comes in those moments though.  It’s not from another person; because…trust me, I make sure I’m alone during those times. It’s the ultimate “Comforter.” (John 14:26)   There’s a calm reassurance and presence that wraps around my heart and squeezes it back together.  He gently places the bandage of Hope over my scar and whisper’s “I’m here and I’ve got you.”  You know what?  He’s got Sarah too.  He holds us both.  That vision gives me so much strength.  So, for now, I’ll focus on that.

I’ve been drawn to the cemetery a few times lately in the early mornings, after taking Libby to school.  I guess I know the cold weather is coming and it won’t be as easy to go.  I took a white pumpkin to her gravesite and left it.  Every year, that was her choice.  She loved those white pumpkins.  I can’t see one and not think of her and all that her life represents now. I understand that not everyone is a fan of celebrating Halloween.  When we think about the process of creating a jack-a-lantern though, isn’t it a bit symbolic of what Jesus wants for us?  When we invite Him in, he cleans out all the yucky stuff and puts a light inside of us that others can see.

I love that as I’m driving off out the cemetery in Hope that I can always see the empty tomb.  That reminder…gives me just the boost that I need to keep driving.   

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. 

The New Me

I was able to collect some beautiful seashells on a recent trip to Florida. I started out looking for the perfect shells and then sensed God telling me to pick up the broken ones…they’re beautiful too. I needed that reminder. Sometimes I miss the old me.  The person I was before Sarah’s diagnosis of cancer.  I started to write that I missed the person that I was before she died, but truth is, the day we walked into the children’s hospital and started fighting cancer, was the day that the old me died.  You know that girl, the one that was so carefree and lighthearted–the one that was oblivious to deep pain and disappointment.  Sure I had suffered some losses, but none like the loss that Sarah’s cancer caused…everything changed.  Pediatric cancer is such a giant that it takes all of your focus.  It required me to give up my job, some of my friends, some of my dreams, serving others at church, and other things that were once important to me.  In a lot of ways I had to put my marriage, my other daughter, and all the other things that once seemed so urgent to the side and focus on the fight.  What a fight it was: long hospital stays away from home; hours of stressful waiting and researching, so that you can advocate for your child; lack of sleep on an actual bed; lack of normal routine; or even healthy eating; little to no exercise; being exposed to witnessing your own child and also other children and families suffering horrible side effects and treatments just to give them a chance to survive; and feeling helpless the whole entire time.   Every single family fighting this battle becomes warriors and it changes you…just like the young person who signs up to serve in the military.  They’re always so naïve and innocent, until they experience active duty.  You can’t survive a battle and walk away without some wounds.  Those wounds can heal, but you’ll always have the scars. 

So, that’s me today.  With the deep wound of grief and other scars from the trauma of losing a daughter to pediatric cancer.  As one by one I’ve watched other warrior families lose their children or relapse, it causes deep sadness and always takes me back to those traumatic moments that we lived.  I’m not in any way implying that I don’t want to know about their journeys.  I do want to know, but I’ve come to accept that is just the way this works.  I can relate to their struggle on a whole other level than the “normal” person.  Just like the military veteran, who seeks out other veterans to connect with, there is definitely a connection with those other cancer warriors.  To be honest though, if it’s a newly diagnosed situation or someone that’s still in the “thick of it,” I wonder if my scars scare them?  I know that even being around me, or us (I’m speaking for Chad and Libby here too, I guess) is sometimes hard for others.  Especially, if you haven’t been around us very much.   Hopefully, if know us well, or are willing to hang out with us for a bit, you’re getting more use to the new me/us. 

Yeah, part of me is gone. Good or bad, there are some new things though that have been added to my personality.   There’s a quietness that I know will always be there.  There are deep and somber moments that just hit and I have no control over it.  There is also a deeper sense of purpose and determination to not chase after anything that isn’t truly important, even eternal.  There’s courage because honestly, I’m just not afraid of death.  There’s a deep sense of the spiritual that I know has only come because of the encounters I’ve had with Jesus through this journey.  Yeah, it’s probably made me weird and I’m OK with that.  Just like Psalms 23 promises, He has walked me through this “valley of the shadow of death.”  Actually, I think at times, He’s carrying me. 

happy birthday card

A Letter to Heaven

My Dearest Sarah,

Within the context of time, it’s April 8th and we are celebrating your birthday. I can’t help but wonder how those “dates” are marked in heaven, where time is so different? I fully believe that being in the presence of Jesus must be better than any earthly birthday could ever be-because He loves you and values you so completely. Here on earth we find ourselves using our birthday’s as “markers” to determine how well we’re doing in the process of fully becoming ourselves and I’m sure that upon ones arrival in heaven, without the weight of sin, surely the transformation is instant!

What can I “give” you that you don’t already have? All that comes to mind, is to continue what you started here on earth-with your friends and community. For I know, your love for them lives on eternally. So, that’s what we continue to try and do. I think you’re pleased about the Birthday Blood Drive. I know you were already making plans to have one, once COVID was over. We’re grateful for each person that’s willing to step out of their comfort zone and give to save lives in this way. I’ve recently heard stories of kids going through treatment that are having to wait to receive blood products, because there just isn’t enough. I can not imagine how that feels for those kids, families and medical staff. We can do better.

There’s so many ideas running around in my brain about ways to continue what you started! You’d be so proud of the elementary school for starting their own Bible Club and meeting regularly to learn more about Jesus! G.L.O.W. is going to be able to “gift” every graduating 6th grader a Bible this year and I’m going to personally invite them to join us at our “Fire & Music’ bonfire nights. You’d also be thrilled that your friends are stating a college aged women’s Bible study very soon! I’m so excited for them to strengthen their “tribe” and connect with more friends that are longing to really know Jesus in a deeper way. The impact that will have on the rest of their lives, is mind-blowing! We hope to do more Bible journaling classes, take a larger group of college aged kids to Passion, and do another G.L.O.W. Run this year to raise money for cancer research. There’s more dreams and visions that I’m not quite ready to share…but, I have a feeling you get to take a peek at those sometimes and maybe even Jesus lets you help create those. Together, we make a good team. That’s the beauty of what Jesus did. Physically, death may have separated us for a little awhile, but not forever. Our spirits are forever united through Jesus. So, Happy Birthday Sarah Rose! You inspire me. Every. Single. Day.

Love,

Mom

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.