Uncategorized

It’s OK to Just Listen

Grief makes us uncomfortable. Being face to face with someone else’s intense sadness is really hard. In my life, people feel doubly awkward because my child had cancer and died. There are two subjects that make people painfully uncomfortable. No one knows what to say or do, so many people follow the “I’m sorry” up with “my (insert relative or friend or random acquaintance) has/had cancer”. While yes, that matters and it’s terrible that anyone had to fight such a horrible disease . . . it’s just not helpful to compare an adult who fought and survived or even fought and died to someone’s child.

That in no way means I don’t care about other people and their struggles and losses. If anything, I’m MORE compassionate for loss and suffering now. I see the need for compassion and encouragement everywhere. I constantly think, I wonder what that stranger next to me is going through.

I also completely understand that when you’re hit with “my child died” it makes people uncomfortable and they are trying to show you they care or that you’re not alone because they know someone who had cancer and died.

I get it.

I’ve done it!

Before we started walking this road, I’ve known several people who have lost children and you don’t know what to say so I filled it in with:

“I can’t imagine.”

“I don’t know what I’d do.”

“I have a friend whose daughter died.”

“I lost my (insert person) so I get your pain.”

ALL of those things are valid and sweet things to say and no one is terrible for saying them. Our instinct is to ease people’s pain because it makes us uncomfortable—it’s 100 percent normal and human. BUT to be completely honest—which I’ve promised to be since Sophie was diagnosed—now that I’m on this side of it . . . it’s just not helpful.

It makes me feel like I need to stop in the middle of my grief to be sad for an adult who lived a much longer life than my baby. Again, I’m not saying I don’t care about others and their pain or that my pain is more important.

It’s just that when someone is sharing their grief with you, it’s OK to just listen and not try to take their mind off of it with a story of another.

If someone is sharing their grief with you, it’s because they want to. They very, VERY easily could suck it up, say “I’m fine” or avoid talking about it at all. So if someone is sharing with you, it’s OK to just listen. I want people to know that it’s OK to not know what to say.

It’s OK to say nothing.

It’s OK to start crying because what I just said shocked you and broke your heart.

It’s OK to say “I don’t have words for that.”

It’s OK to just say “I’m so sorry.”

It’s OK to simply say “I love you.”

It’s OK to say “I don’t know what to say but I’m here.”

It’s OK to say “I know it’s been a few months/years since your loss but I remember . . . I’m still here.”

It’s OK to grab my hand and just sit in silence.

Really, I don’t expect anyone to know what to say because . . . there’s nothing to say.  I promise, I don’t know what to say back to you. I can’t say “it’s OK” like I normally would if someone apologized to me because, in this case, it’s not OK. I can’t say “Well at least . . . ” because there’s no at least.

My child fought, faced every worst case scenario imaginable, and then died. Something terrible and broken happened and there’s no “good” response. Just be there to listen. You don’t know how to help even though you desperately want to, but . . . we don’t need help. Nothing you can do or say will fix the grief, but feeling loved and not alone can make a bad day a little better.

Just be there to listen . . . because that’s what we need.

Originally published on Her View From Home https://herviewfromhome.com/its-ok-to-just-listen/

She was never mine.

The Bible talks extensively about stewardship. It is a concept that our worldly broken hearts have a very hard time reconciling with. What we have in our lives does not belong to us. We are temporary caregivers. We stand in place of the real owner. Much like managers who govern in place of a king. This analogy reminds me of a Lord of the Rings reference when in the movie version of The Return of The King, Lord Denethor, the steward of Gondor refused to acknowledge that the true king had returned to claim his throne. Denethor forgot who the ‘owner’ of his kingdom was.

We don’t own anything here. Everything is God’s and we deserve none of it. This includes our children.

He gives them to us for a short time. Our job while we are here is teach them about the Lord. We teach them to say their prayers and love others as He loves us. We take them to Sunday School and sing ‘Jesus Loves Me;’ and ‘Amazing Grace’ to them as we lay them in bed. We long for them to become adults who want nothing more than to honor the Lord with their whole hearts and lives. We should be raising a generation that will lead others to Christ and serve the Lord as they walk in their calling.

So how then, do we accomplish that when our children die before they reach that adulthood? How am I doing my ‘job’ as a mother if my daughter has died before I could raise her up to be strong and courageous for the Kingdom of God? The answer is-she was never mine to begin with. My job was to care for her for 2 years and 9 months. My job was to battle for her as she fought Childhood Cancer. My job was to hold her as I helped walk her Home to her Heavenly Father. My job now, is to tell her story.

Luke 14:26-27 says, “If anyone comes to me and does not hate his own father and mother and wife and children and brothers and sisters and yes, even his own life, he cannot be my disciple. Whoever does not bear his own cross and come after me cannot be my disciple.”

After losing my daughter, I think I’m beginning to understand what this means. I’ve always thought-Lord you can have my money and my stuff but, I need my family and those important to me. When you’re truly a follower of Christ, you must be willing to give it all to Him-even your children. The scripture says we cannot be a disciple without giving them to Him. That is SO hard for our human brains to comprehend. We seek to be completely in control of our children and their well being. As mothers, we are genetically designed with the instincts to care for and protect our children.Our bodies carry and birth them- they literally come from us yet, they don’t belong to us. It’s not an easy thing to think about. The thought of ‘giving them up’ to the care and authority of someone else is ludicrous. Then you remember, they were never yours to begin with. They have always been and will always be His.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139: 13 & 14

Losing a child is the worst pain imaginable. There are days where I feel like I failed in my mission to protect and care for my daughter. It’s on these days that I lean on the Lord’s promises the most. He loves me and He loves my daughter. He has a plan for my life and He had a plan for hers. God’s Plan for my daughter’s life was that it would only last 2 years and 9 months here with me. His Plan for my life is that I was able to be her mother while she was here and now I get to share her story with the world. Having faith in His greater Plan doesn’t mean that I’m happy about losing my child or that I at all accept or understand why it had to be her. However, believing and resting in the promises that her death is not for nothing and that there will be a day when death is finally defeated brings me comfort and peace.

She is His and so am I.

Originally published on Her View From Home

God DOES in fact, give us more than we can handle…

I used to be someone that said ‘God doesn’t give you more than you can handle.’

That was before I had faced any hardships in my life. I didn’t know who God truly is.

When people are going through something hard and decide to share it, it makes people uncomfortable. It’s hard to watch others who are hurting, and it’s hard not knowing how to help when it’s someone you love.

“God doesn’t give us more than we can handle” is a very well meaning encouragement that I know is meant in love. -I’ve said it before! But it’s not really comforting at all in the way you hope or intend it to be. In fact, many of us who are experiencing hard things would want you to know this:

That phrase does not come across in the kind way you mean it. It firstly implies that those that don’t experience suffering in their lives are some how ‘unable to handle it’ and people like me who do ‘can handle it’. I promise you i don’t ‘handle it’ on most days. It also makes it sound as if all the horrible things in our life came from God. When you use the words “God” and “gives” in the sentence that way, what I personally hear is:

God gave her cancer.

God caused the relapse

God did the brain damage.

God took her.

God did these things…..because I can handle it.

I don’t believe any of that for ONE second but, it still stings in my heart a little to think that.

 

We fought aggressive Lymphoma in our 2 year old. We watched her unconscious and dying in the PICU with 11 tubes coming from her. We sat by helpless as ‘rescue chemo’ slowly took her independence away. We cleaned up throw up, poop, blood, feeding tube formula, and medicines. We held her down to get poked and prodded. And then we said goodbye and have to go on living without her. THIS painful chapter of life FEELS like it’s more than we can handle because IT IS MORE THAN WE CAN HANDLE. And we weren’t given a choice, we have to handle it.

The truth is He ABSOLUTELY gives us more than we can handle. That’s the point. He gives us more than we can handle alone.

We are to turn to Him in times of trouble and pain and lean on Him to take the burdens for us. Jesus died on the cross so that we don’t have to go through anything alone. The sheer force of humanity is more than we can handle alone. Can you imagine handling the weight and consequence of sin alone?!

Psalm 18:2 says ‘The LORD is my rock and my fortress, and my deliverer, My God, my rock, in whom I take refuge; My shield and the horn of my salvation, my stronghold’

He gives us way more than we can handle alone so that we will take refuge in Him and lean on ‘the Rock of my strength’ Psalm 62:7. He also places people on our lives to stand in the gap and pray for us when we don’t have the words. People that will love on us and support us through the difficult times.

Trusting Jesus with your salvation is so much more than just going to Heaven when your time comes. It’s entrusting every aspect of your life to Him. It’s also trusting that He is GOOD ALL THE TIME. When terrible things happen, He’s good. When there’s joy, He’s good. We may not know why things happen to us on this side of Heaven but, we have to trust that even then, He’s good.

God didn’t cause any of this but, you better believe He’s going to redeem it.

#SophietheBrave #DoMoreForSoph #GodisBIGGER

The Question No Grieving Mom Wants to Hear

My name is Shelby, and I’m a mom without a child.

My 2 year old daughter, Sophie was diagnosed with Stage 4 T-Cell Lymphoblastic Lymphoma in May 2017. We had 12 weeks of her responding well to treatment when she unexpectedly had a MASSIVE relapse in August. Our doctors had never seen a child relapse so soon in 40 plus years of practicing.

We were in the club that even cancer families don’t want to be in, the ‘rare disease’ club.

We spent 9 days in the ICU getting 15 doses of adult ‘rescue chemo’ that saved her life and knocked her into remission but, it came with huge neurological consequences. Sophie began slowly declining and losing her independence. By the end of August she could no longer sit up, walk, talk, eat, play, use her hands, or do anything at all on cue. She basically ended up with the horrific side effects that 1% of patients end up with. She was truly unique, the ONLY child living in America with relapsed T-Cell and severe neurological deficiencies.

We started physical, occupational, and speech therapy trying to get her strong enough for our only shot, a Stem Cell Transplant but, her tiny body just couldn’t handle it. On December 22, 2017 we were told the devastating news that her Lymphoma had again relapsed and was invading the left ventricle of her heart. She neurologically couldn’t handle anymore chemo and we were out of medical options. At that time, we decided to withdraw palliative chemo and let her spend what time she had left without poison consuming her body. We spent 13 days singing, holding her, watching movies, and being together before she passed away in our arms on January 4, 2018 at 2:11 pm.

Ever since that day, I have been dreading the question. The question that I know I will eventually get asked when I go out and meet someone that doesn’t know my story. The question that I fear will knock me completely to my knees and shoot me back into that hospital room. What question is that?

So, do you have any children?

I know that as soon as I say something like “Well, I have a daughter in heaven,” that I’ll get the pity look and the awkwardness that comes with being different. People don’t know how to respond to that. I saw it for nearly 8 months when I’d tell people that my child had cancer and was in the hospital. People don’t know how to respond to open grief and that’s ok. I can’t fault anyone for that but, the thought of answering that question fills me with so much fear and anxiety. I am a mom. I carried a baby for 38 weeks, labored her into this world for 13 hours, and spent 2 years and 9 months with her but, I don’t have any children here on earth with me. I don’t spend my days at play dates, changing diapers, cleaning up toys, or making snacks. Instead I spend my days with my face buried in her hospital suitcase trying to find her smell.

Then, my God whispers, ‘Trust me with this.’

The question is just another unknown in this life. I have no idea when I’ll get asked but, I know what my answer will be and I know that no matter what, He is here for me. He is big enough to handle my grief and my fear. I can’t keep fear of a question from letting me go out and live my life. In fearing the question, I’m actually just afraid of facing more instances where I’m reminded of her absence. When in fact, nothing extra can remind me that she’s gone. I feel it all day, everyday and a stranger’s question doesn’t have the power to make or break me. I think fearing that question is just another way the enemy is trying to manipulate me into thinking God isn’t big enough to help me through this. He wants me to be too afraid to share my pain that I clam up and fall apart or even lie to avoid feeling uncomfortable. We are called to be overcomers of fear, to call on the name of Jesus when we feel weak and let him strengthen us with the truth of who is is.

Psalm 145: 18 & 19 says “The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him, he hears their cry and saves them.”

I’m still Sophie’s mom. I’m still here even though she isn’t. It would be insulting to the 8 month long war that she waged against cancer if I stay in fear of a question instead of using that question to share her story. So, maybe instead of dreading the question and seeing it as a source of grief, I should look forward to it. Maybe I should go out seeking people to share her story with. It won’t be easy. Nothing about this is easy. She was brave and I can be too because the Lord is my stronghold and I would miss so much by not sharing just how much he has done for me.

The Lord is my light and my salvation-whom shall I fear?

Psalm 27:1

Originally published on Her View From Home

The one my soul loves….

Statistics say that 80% of couples that lose a child end up ending their marriages.

When you get married all starry eyed with fairy sprinkles in the air you say your vows not really thinking you’ll ever need to follow through on the ‘bad ones’. You know for better or WORSE, for richer or POORER, in SICKNESS and in health. So long as you BOTH shall live.

When your spouse dies, you’re a widow or a widower. There’s no ‘term’ for losing a child because it’s that terrible. Marriage always takes work but, especially when you’re grieving. The loss of a child is so horrible-so impossible-so all consuming-that marriage takes a backseat to grief. Most days are spent just trying to function so, putting effort into your spouse is not even a thought sometimes.

It takes conscious, daily, purposeful effort to maintain a marriage during extreme grief.

Now-I’m not saying Jonathan and I have done a perfect job over the last year but, we have tried really hard.

When Sophie was diagnosed, we knew we’d be spending a lot of time apart between one of us needing to be with her and the other needing to work. We had no idea, of course, just HOW MUCH time she’d spend in the hospital. We had no idea I’d have to stop working entirely and that he’d have to go more than week without seeing us sometimes.

It was hard. So hard. But we were determined from day one to stay as a team. We knew that stress between us would not benefit her. So, we put communication first. I sent middle of the night novel emails to him so he’d know where my brain was at. We tried to get time alone at Ronald McDonald House, dinners together, and an occasional night at our home together. We prayed fervently for her but also for each other. And we made it through 231 days of cancer with very few arguments.

Then, she died.

And I could write a book on everything we’ve done in the last year (in fact I’m planning on writing it eventually) but, for now, I’ll just say. We don’t get it right everyday. The last 5 months have been hard. Unimaginably hard. But we are still here and we still love each other most.

Ephesians 4:2-3 says

“With all humility and gentleness, with patience bearing with one another in love; eager to maintain the unity of the Spirit in the bond of peace.”

Grace has been our theme. We have given each other HEAPS of grace. We’ve given each other the freedom to grieve differently and to not judge where the other person is at. One day I may have a ton of energy and be happy but, he may be deep in a hole of grief. The next day could be completely opposite. We’ve tried really hard to be there for each other when we need it and give space too.

Counseling has also been huge for us. We started grief counseling together in February and it’s been so good. It gives us a space to talk about what’s on our hearts with someone we love and trust and who know us and her. I can’t say enough about how valuable counseling is-for ANY marriage-but especially in grief.

We also have started planned date nights. We’ve found that a lot of the time-we don’t have much to talk about anymore because she was and is our whole life. It’s hard to talk when you both know what’s ‘wrong’. It’s also been hard for us to not just completely check out when we are at home. We don’t really talk about her or ‘it’. There have been many nights of Netflix and us staring at our phones because checking out is just….easier. So our ‘homework’ for counseling has been to write a date night on the calendar and a night where we talk about it. These designated nights, written on the calendar give our brains the freedom to plan out our week and things to look forward to.

I made a date jar for Jonathan’s birthday and the dates range from a movie night at home, going for walks, playing cards, going to dinner, hiking, double dates, group dates, to overnight dates out of town. They’re all different and most of them are cheap or free. We draw a date on Sundays and look at our week then write the date on the calendar.

It’s been SO good for us. Time to connect-without phones. Time to talk about it if we want but also talk about the future of just random stuff too.

We are always a work in progress and we don’t get it right all the time but, we’ve promised each other to put each other second behind Jesus but above anyone else.

I’d choose him and this life over and over again.

Another First. Another Day Closer.

I honestly didn’t know how I would feel about Mother’s Day much like I didn’t know how I would feel on Soph’s birthday. The anxiety leading up to it was pretty overwhelming. I’ve cried over little things in the past week more than I have in the last month combined. It’s so tough to think of a day where your children are to celebrate you…when your children aren’t with you anymore. I’ve been a mom for 5 Mother’s Days. In 2014 I was pregnant with our first and miscarried a week after. 2015, 2016, and 2017 were with my perfect Punkin. And then 2018 and my arms are empty.

So no, I had no idea what Mother’s Day would hold for me. I felt kind of helpless as it approached. Jonathan-always so conscious of me and my feelings-kept asking me how he could best love me on this day. He didn’t want to upset me by overdoing it OR by doing too little. Bless his heart-I wasn’t much help because I said ‘I just honestly don’t know how I’ll feel that day.’ I did know I wanted to stay busy and my sweet friends just showed up as they always do.

Friday was spent planting succulents with my sister….she says Incan’t kill them but the jury is still out on that. Green things don’t usually survive around me but, I’m willing to try. I spent the evening loving on my sweet friend Tami and Sophie’s bestie Addie Leigh at a gathering of a bunch of friends and their kiddos. Addie is doing so well in her treatment-it’s such a blessing to me to be able to watch her conquering cancer! It also helps my heart to help take care of her and I’ll forever be grateful to Tami for letting me ‘borrow’ her kids. 🙂 It’s also so great to be around people that know me, love me, and know that it’s ok to be normal around me but that it’s also ok to ask me how I am and it’s ok to talk about their life and kids.

I spent Saturday running around with my love and then dinner with some of our precious friends from church. Sweet Carolyn has left something on my doorstep every single Thursday since January 4th. The selfless way she loves me is a true example of what service should look like. We were able to sit and talk for hours and the best part-their daughter’s name is SOPHIE! I didn’t know how I’d feel being around her but oh-it was just so amazing to be able to hear and say the name I love so much. It was so so good for my soul. Our night ended on the back porch of another set of our friends just visiting and talking about life. I seriously am living life with the most amazing people. When I think of how good the Lord has been to us to put so many incredible people to walk this road with us-I’m just overwhelmed with thankfulness. I would most definitely not be functioning without my village.

So yesterday, I opened my eyes at 11:15AM. Jonathan had gone to church without waking me….because he is the MVP of all husbands and knew I very obviously just needed the sleep because his alarm almost always wakes me up. My sister and I joke that a great night’s sleep makes us feel like Disney Princesses when they wake up and, I had Disney Princess sleep Saturday night. I woke up to 47 text messages from the people I love. Words of love, encouragement, prayers typed out, memories of my sweet girl…all flooding my phone reminding me that I am SO loved. I woke up full of peace-which could only be the peace of the Lord upon me. I felt every prayer and good thought I know was being sent my way.

And Mother’s Day ended up being a pretty good day. Flowers from my bestie. More flowers from sweet friends. TONS of incredibly sweet and heartfelt Facebook messages and comments for me. The fact that people continue to take time out of their days to reach out to encourage me is just so humbling and again-reminds me how much I’m loved. I also had great workout in an empty gym-which is always a good thing! Errand running, herb garden designing, and manicures with my sister. Flowers, the most mushy and wonderful note from my love and those big, muscly arms he’s so proud of hugged me more times than I can count. He knows so well that when there’s nothing to say-a strong hug says it all. God broke the mold when He made Jonathan for me.

There were tears today. Tears as I looked at my favorite pictures of my girl. Tears as I sat at the cemetery and wiped away the dirt. Tears as I placed the fake flowers I finally bought because it kills me to have dead and gross flowers there on her spot. Tears as I knelt-like I always do, touched her name, and said ‘Bye my Punkin-I love you so.’ Tears as I read so many sweet messages that deeply touched my heart. Tears as I read the words my husband-a man of few words-poured onto paper for me. And tears as he held me because she’s supposed to be here for these days. There were tears-but also so much joy.

I ended my day at dinner celebrating my precious mother-in-law and laughing with the best family anyone could marry into. (Seriously, be jealous.) And then the famous Skiles sing-a-Long came to my house, ending with more tears as they sang Silver Wings-the song that soothed my Soph in those last days. A song that speaks so clearly to me about my little love going to be with Jesus. It’s not a religious song but, it touches my heart each time I hear it and puts me back in that hospital bed, surrounded by both of my families, holding my 25 pound-fuzzy headed cuddle partner, rubbing her smooth hands, and kissing that head. Sweet sweet memories tied to that song that I am forever thankful for.

The grace that overwhelmed us in those last 13 days is the same grace that covered me yesterday. I felt enveloped in love and peace that could only be from my Father and I like to think from my Punkin too.

I’m so honored to have been her mama. I’m forever changed because of her life, her bravery, and the promise of Eternity with her and my Savior. I’m One day closer.

“Silver wings,

Shining in the sunlight,

Roaring engines,

Headed somewhere in flight

They’re taking you away

Leaving me lonely

Silver wings

Slowly fading out of sight

Slowly fading out of sight”

Sophie the Brave Day

Monday, March 19th is Sophie’s 3rd birthday. We want to celebrate her memory by affecting as many people as we can in a positive way! We invite anyone and everyone to #DoMoreForSoph on her birthday! You can go BIG or small, spend a bunch of money, or give away free smiles! Whatever you can do to make someone’s day better because Sophie made everyday she was alive better just by being herself.

Kindness is everywhere around the holidays but, falls off after a bit. So many of the organizations and places that are packed with volunteers and donations from October to January are empty and lonely by March.

Some ideas of examples:

-Collect items to donate to hospitals, nursing homes, homeless shelters, etc.

-Pay for someone’s meal in line behind you

-Take water and snacks to people working outside in construction crews, lawn services, etc.

-Send someone flowers or an encouraging note

-Take your kids on a special date

-Do someone nice for your spouse or household that you wouldn’t normally do

– Find a local volunteer opportunity

-Donate school supplies to your kid’s teachers

-Take a meal to someone that might be struggling

-Let someone know you’re praying for them

-Sign up for monthly donations to a worthwhile organization OR make a one time donation.

Some good organizations to look into are Gold Network of East Texas, St. Baldrick’s, Alex’s Lemonade Stand, Samaritan’s Purse, Layla’s Legacy, Sadie Keller Foundation, YoungLife, Refuge of Light

-Sponsor a needy child through Compassion

-Make cards for hospitals, police stations, nursing homes, etc.

-Send snacks to nurses stations at the hospital or doctor’s offices

-start collecting items for Operation Christmas Child in December

Feel free to share any ideas you have in the comments and PLEASE share how you #DoMoreForSoph on her birthday and any day between now and then!

We, as Sophie’s family will be celebrating her by taking a load of items to Children’s! We will have things for the parents of inpatient kids as well as supplies for Child Life to give to kiddos needing encouragement! Although this day will be so hard without her here with us, it brings me such JOY to know that she will be remembered and celebrated all over!

We miss her so dearly but, find comfort in the huge support we have found throughout her journey. Thank you for keeping the memory of our brave Sophie alive by sharing her story and bringing more JOY and KINDNESS to the world in her name!

I have created a Sophie the Brave Day Event on our Facebook page and I will be sharing different ideas for acts of kindness each day leading up to Sophie’s Day. Feel free to join that event and share it with others! Sophie deserves the world celebrating her!

A heart that is Broken, yet full

Last week, I wrote about visiting our four sweet friends that were all inpatient at Children’s. We used that as an opportunity to visit the hospital together for the first time since Sophie died. (It’s still SO weird to write that word.) I have an update on two of our friends and they are VASTLY different updates. One of them is full of joy and celebration and the other is buried in grief and loss. These two stories, along with my own current story, and a pretty difficult bible study week on suffering have made for a very hard yet, thought provoking week for me.

On Sunday, February 18th, our friend Kaylynn took her last breath in her mother’s arms. She has been terminal since October but, she’s been very stable recently so her sudden passing was a shock to her family. My heart shattered when my sweet friend text me that she was gone. I wanted to jump through the phone and grab her and hold her tight. I also was struck with very weird emotions. I was obviously just crushed that my friend has to feel what I feel. That she has to have the image of holding her child as she died and all of the horrible things that the hours afterward contain. Those are memories that NO ONE should have to endure. At the same time though, I was slightly and very selfishly relieved because now, I’m not ‘alone’. That’s not something that I’m proud of thinking….obviously I would NEVER wish losing a child on anyone. But I’ve vowed to be completely transparent throughout the last 9 months and this is part of that transparency-being broken for my friend but finding small comfort in someone else knowing how I feel. I shared last week that I felt a huge pull to become Lindsey’s friend and now I fully believe we were meant to become friends to walk this very long and hard road together. That makes me thankful. Not thankful that our sweet girls had to suffer and leave us way too soon but, thankful that we have each other to lean on.

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God.” 2 Corinthians 1:3-4

The Word of God has been such a comfort to me in the last 9 months but, especially in the past 7 weeks and it calls me to comfort others.

It has been so hard this week to relive Sophie’s death and the days after as I try to comfort my friend but, having friends that walked this road before me was such a blessing, I can’t sit by and not try to help another mom. Because of my tragedy it has given me a greater sense of oneness with others who experience tragedy in any form but, especially in the loss of their child. Granted, it’s only been 7 weeks and I am definitely not ‘doing grief right’ every day but, I can feel for them in a very unique way that most if not all of their friends just cannot feel. (PS-Just to clarify there is no right or wrong way to do grief.)

Yesterday, there was a light shining on this dark and rainy week in the form of another of our friends. Abigail went back to the hospital for a post-op check up after her lung biopsy last Thursday. They were absolutely SHOCKED to find out that she is NED (no evidence of disease) and was receiving her LAST CHEMO EVER yesterday! Our sweet friends were floored! Not only is their baby cancer free but, she is finishing treatment only 6 months in…way sooner than they ever anticipated! My heart was completely bursting with joy for them! I wanted to get in the car and drive to Dallas and jump up and down and cry with them! I still might just show up at their house for my own impromptu party so, Jessica get ready ha! My immediate response was oh Thank you Father for this gift but then, again, the selfishness reared its ugly head with jealousy in the midst of my joy. SO incredibly thrilled for my friends but, so very jealous of their good news and so sad that we didn’t have the same outcome. But how sweet of the Lord to remind me that even in the middle of a hard week, He’s still so good and grief is not all there is for me. The light of my friends’ joy gets to shine into my darkness and speak life to me. How good He is to give me a friend that I can be completely honest with and say-I’m truly happy for you but so jealous and for her to say-in my joy I thought of you too. How GOOD He is to provide this kind of friendship for both of us to be so fully engrossed in our own different situations but also so aware of the other person too. It’s just incredible to me that I’d never have met these amazing people if it wasn’t for cancer. Good things can come even here.

That’s the Gospel at work. Creating beauty from ashes and shining light in the darkness. Finding hope where there seemingly is none and realizing that suffering isn’t forever. God doesn’t enjoy the suffering of His creation, nor does He cause that suffering. Our God heals (Jeremiah 30:17). He walks with us through the valley of the shadow of death (Psalm 23). Even in eternity He wears the scars of Jesus’ suffering as a constant reminder that our suffering matters to Him. God did not cause it, but God will ultimately heal it. He calls us in so many different places in the Bible to FEAR NOT.

Now, all of that doesn’t answer the lingering question that’s on my heart after a roller coaster week like this one…Why do some kids have amazing outcomes and others (like mine) don’t? It’s a natural question that I’m sure every single person is thinking that’s reading this. I don’t have the answer but, I have the divine peace that helps me say… I’m ok not knowing. It doesn’t make my grief easier, it doesn’t bring Sophie or Kaylynn or any of the other lost ones back. It doesn’t cure cancer or make any of this make sense. But there’s comfort in eternity, there’s light in the darkness, there’s healing….. on earth as it is in heaven.

Please be praying for:

1. Kaylynn’s family as they celebrate her life this weekend and start the journey that no one wants to take.

2. Praise the Lord for the healing of Abigail and pray for continued health for her as she recovers and goes on to what’s next.

3. Continuing praying for Jase and Addie as they both are still inpatient at Children’s waiting for their immune systems to bounce back.

4. Pray for us as we grieve with Kaylynn’s family while a,so celebrating with other families. Pray that we can navigate ALL of the emotions that come with that.

5. Pray for our weekly counseling sessions that we started this week. We are hopeful that we will be able to talk through our grief and grow closer to each other.

Thanks friends.

6 weeks

Today my heart is heavy. It has been 6 weeks since my sweet one went to Jesus. Today is also International Childhood Cancer Day. Today ALSO happens to be the day that I will step back into the halls of Children’s Medical for the first time since I left my baby there 6 weeks ago. Today is heavy but, today also has purpose.

When we were at the hospital, I was very hesitant to make friends. While I know having a strong network of other cancer families is very important, it’s also incredibly hard to take on the grief and worry of other people while you’re right in the middle of fighting for your own child’s life. At least, that’s how it was for me. I didn’t really put myself out there to make friends because it just felt like too much. Too much worry, too manny tears, and just…too much CANCER! Sure, I followed the Children’s Cancer Family Page on Facebook, knew several names and faces, even had some good conversations but, as far as like exchanging numbers and becoming true friends…I just couldn’t do it. Self protection I guess.

The Lord knew better for me though because 5 weeks into our treatment another Tyler family was hit with Leukemia in their 4 year old son, Jase. They were at the hospital with nothing and I knew that feeling all too well so I went yo Walgreens, made a care bag, and left it at the nurse’s desk for them with my phone number. Shauna, Jase’s mom text me that night and my first real cancer friendship was born. They visited us every week when they came for chemo and I just love them so.

6 days later, Sophie’s best friend from church, Addie Leigh and her precious mom Tami showed up with Leukemia as well. Tami and I were pregnant together and friends from church so obviously, God sent us both to Children’s for each other. We also are pretty similar to each other which is great! She has been invaluable to me and I’m so thankful for our growing friendship in the midst of the horrible.

In August, when Sophie relapsed, we sat in the ICU waiting room while she was sedated and intubated. I see a guy walk in with like 23 children! Ok-it was like 8 but it seemed like a ton to my tired brain. I hear his children asking ‘How can mom nurse the baby if the baby can’t go back in the icu room?!’ They were seriously distraught. I immediately interjected-sorry to eavesdrop but you guys need a Ronald McDonald room ASAP!-We quickly found out Dustin and Jessica were the parents of Abigail who had just had her kidney removed with a Whilm’s tumor. They were beginning their cancer journey right there where we did-in ICU. We’ve since formed the most incredible friendship with them!

Then lastly, my sweet friend Lindsey. I had seen her daughter Kaylynn for months but never reached out to them-self protection remember? Then in October (I think), I read on the Children’s page that Kaylynn was considered terminal and my heart just broke. The Lord was telling me to befriend her mom, there’s no other way to describe it. I felt this unexplainable pull to her. So I messaged her on Facebook and we ended up meeting in the hallway and sitting in a side sitting room on the 6th floor for an hour one day while both of our girls slept. I know now, we were meant to walk the ‘terminal’ road together.

These friends of mine mean more to me than I could ever tell them. I pray for their babies every morning and at night when I can’t sleep. I tell Soph about them when I visit her at the cemetery and I ask her to help them be brave like her. I will admit that I some days have a hard time texting them because….well….their kids are still here. But what’s so great about these friends is that-I know they understand and they love me still. I know they pray for me because they tell me every time they do. I HATE the circumstances that formed these friendships but oh how thankful I am for them.

j

Today. 6 weeks after losing Sophie, I will walk down those halls to see ALL FOUR of my friends. They are ALL at the hospital right now. The halls are still full. Cancer doesn’t change and it doesn’t stop. I’m dreading the walk up the skybridge and the ride up that stupid talking Train elevator. But at the same time, I’m SO looking forward to hugging my friends and THE NURSES!!!!!!! Oh I can’t wait to hug me some nurses!!!

I am a purpose driven person. Give me a task and I can make it work. So today, I have a purpose. Today I will hug my friends, pray for their children, bring them food, and bring goodies to make them all smile and feel a little less like cancer. I wish I could do more but, people did SO much for us that I’m so blessed to be able to do anything for my friends.

Today, I ask you to pray for us and for our friends.

1. Pray for Jonathan and I as we walk those halls and hug those necks. Just pray for us.

2. Pray for Abigail. Her surgery is today to remove 2 nodules from her lungs and test them for cancer. This is HUGE for the remainder of her treatment. Pray that she recovers well and is CANCER FREE!!

3. Pray for Addie Leigh. Addie has been inpatient for over 2 weeks now with fever, no immune system, nerve pain, and viruses. Pray big that she will bounce back and be able to go home soon! Pray that PT will work miraculously for her legs and feet!

4. Pray for Jase. He was admitted yesterday for fever, RSV, and 2 viruses. He also has ZERO immune system. Pray that antibiotics will kick these problems and pray protection over him.

5. Pray for Kaylynn. While she is considered terminal, she is getting palliative chemo to give her time with her mama. Pray for a miracle to save Kaylynn but also pray that she feels good and can make the most of her time with her family.

6. Finally, I ask you to pray about how you can help kids like this. Do some research into organizations that fund research for better chemo and cures!

I know its a lot to pray for but, there’s a lot of kids….and a lot of cancer. They deserve so much more. God is still good and He’s still bigger. He’s big enough for this and so much more.

#AbigailtheWarriorPrincess #AddiesArmy #HulkStrong #PrayingforKaylynn #DoMoreForSoph

Month One

It’s been one month. One month since I saw her eyes, watched her breathe, and held her on my chest. One month since I changed a diaper, gave a bath, and rubbed lotion on soft pale skin. One month of trying to stay so busy that I don’t have time to think. One month of going through the day only to see her face when I try to sleep. One month of sitting by a graveside, burying my face into blankets and clothes trying to find a smell, begging God to take the terrible memories away and make the good ones more vivid. One month of aching arms and broken hearts.

But at the same time…

It’s been one month of getting loved on by more people that I can name. One month of gift bags, movie nights, dinners, lunches, hugs, and sweet messages. One month of hearing countless stories of how Sophie has and is still changing lives. One month of growing closer to my husband and my God because there’s no one else to turn to. One month of longing to be ‘Mom’ and friends saying here’s my baby to love on you. One month of being in a place where I’m forced to sit and BE STILL and know that He is God. One month of being COMPLETELY SURE that there HAS to be a Big God with a big Plan otherwise, how have I made it a month? That’s nothing short of a miracle in itself. We get up each day, still sad, yet determined to live a life worth more. We are living a life that’s broken and the only thing that can hold it together is Jesus.

You know, I’ve been kind of dreading today. February 4th. One month since she left us. But, I woke up this morning at complete peace. I woke up with the sweetest thought in my heart, Shelby, you aren’t one month further from her but, you’re one month CLOSER to an eternity with her and with Jesus.that has given me such peace today, even joy almost.while there’s no joy in losing your child….I’d never try to be fake and say that….there is joy picturing her healed and whole, running and dancing and watching us. There’s joy knowing that she’d be so sad if we just curled up and didn’t do more with our lives.

So where does that leave me? Where does that leave Sophie the Brave, this blog, and her legacy? The full answer is…..I have no idea. The short answer is, I’ve been MIA for a few weeks trying to wrap my mind around those questions. What’s next? Where do I go from here? How do I make my life about more?

So that’s what I’m exploring. I’ve been super inspired lately and am working on several different posts/articles. I’m working on a public speaking course and putting some serious time into studying my God’s Word and reaffirming in my heart that even though I am shattered and I still don’t understand why her…He is STILL BIGGER. Jonathan and I are figuring out how our marriage looks in this new light and we are looking for ways to DO MORE FOR SOPH.

How can you help?

1. Keep following our journey. I wanted this blog to be about more than Sophie and more than my journey as her mom it, about Jesus shining through all of it. And I’d love for you all to continue to follow me through this.

2. Please keep praying for us and our families and praying for what’s next for us all. Just because we have faith in the bigger picture, it doesn’t make the current picture hurt any less….like I said, I spend a lot of time with my face buried in her suitcase of hospital clothes. All the positivity in the world doesn’t change the broken hearts.

3. Pray for my speaking ministry course…..nothing may come of it but, it’s got me excited about writing and wanting opportunities to share what God is putting on my heart.

4. Keep looking for ways to DO MORE FOR SOPH and please share stories with us! It gives our hearts such joy knowing someone is doing something bigger just because Sophie inspired them.

Stay tuned for what’s to come because it just feels like the Lord has us right where He needs us.