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/

2 years of cancer and a lifetime of loss

I started writing this on the 18th but I just couldn’t keep going. The night of the 17th was really hard for me. I just couldn’t quit thinking of May 17, 2017…. our last night of normal at home. It was a simple night…we put together the pink princess tent that Sophie had received for her birthday and she was SO PUMPED. While Jonathan put it together she kept bouncing around him saying ‘oh boy! Oh boy! Oh boyyyyyyyy!’ And we played and played in that tent….then she went to bed….just like every other night.

The next morning, the 18th, I got up to get ready for school…I walked into her room and touched her hair, found her paci for her, and whispered goodbye….just like every other morning. Then I went to work for a long day of 3rd grade field trip.

Completely unaware that I was living the last hours of normal. The last hours of being ‘the old me.’

So that’s why I stopped writing the other day. Because thinking of those moments….the lasts… it was a lot…and trying to add two years of thoughts to that just felt like too much. But today, I’m going to keep going so….here goes…

May 18, 2019 5:00pm

It’s been 2 years, almost to the hour since Sophie stopped breathing at home and we were rushed to our local ER and then transported to Children’s in Dallas. Sometime around 2 or 3 in the morning tomorrow, will be 2 years since we heard the words “There’s a softball sized mass in her chest, it’s definitely cancer…we just don’t know what kind yet.”

And life stopped.

Right there in that Critical Care Unit room of the Children’s ER, our life stopped. All current worries and problems seemed so small. Work didn’t matter….nothing did. Just that our baby had cancer and any future we had ever pictured was gone.

We were so positive that she would beat it. From day one….even in our shock and disbelief, we knew she’d win and have this incredible testimony! Especially when her story went crazy. I started Sophie The Brave the morning after diagnosis just to keep all updates in one place and it hit 5,000 people that day. Our GoFundMe went absolutely insane. We were humbled, shocked, terrified, hopeful, thankful….surely this amazing story reaching SO many people would end out well….her purpose was to show God is Bigger!

Right?

But….if you’ve followed us then you know….it didn’t end well.

From May 18th to January 4th we fought every 1% complication and extreme side effect. A 12 week relapse that NONE of our doctors had ever seen before and catastrophic brain damage that was so rare….it wasn’t even on the side effect list. In fact, it was SO rare that she was the ONLY CHILD LIVING IN AMERICA (maybe in the world) with early onset relapsed Lymphoma and this severe chemo toxicity. And that fact came straight from the doctor at Duke University who CREATED THE DRUG.

So to put it simply….we got screwed. That’s a tacky way to say it but….it is what it is.

And we remained positive that we had a long road ahead…but that she would beat it and be this huge miraculous testimony.

So long story short…she died. Less than 9 months after that night on May 18th in the ER, she was gone. After enduring so much more than she ever should’ve had to endure.

But does that mean she still didn’t have a miraculous testimony?

According to the World view, yeah that’s what Death at 2 years old means but, not to us. We know that even though her being gone sucks so much, that her Life and even her death meant so much more than we could’ve ever planned for her. I could go on and on with example after example of that but, this is already getting kind of long and wordy so I encourage you to go back and read the stories of her. Because she very much was and IS a miraculous testimony of the love, sovereignty, and faithfulness of God.

You know, we live in the reality that we’ve had three lives. Before cancer. During Cancer. And now.

It’s not ‘After Cancer’ because once your life has been closely touched by it…or by any serious/chronic disease I’d imagine…there is no ‘after’…there’s just now.

I know families with children in remission and others who are ‘off treatment’. I know men and women who are years without disease. But….they all know the same thing…that remission doesn’t mean a whole lot. It means they don’t CURRENTLY have disease in their body. And don’t misunderstand me….that’s amazing! Remission and off treatment are HUGE and important and a relief. But. There’s always the next blood-work appointment whether it’s once a month or once a year….you’re never done with the cancer. You’re never done with making sure it’s gone.

For us it’s not much different. Even though Sophie is gone and done with cancer, we aren’t. We don’t sit and dwell on it waiting for a terrible diagnosis but It creeps in in moments of doubt and fear.

It comes when I wait for my routine prenatal blood work. Why haven’t they called yet? Is it because I’m dying? It came in the form of horrible dreams that Connor had a tumor in his chest on his ultrasound. It came when Jonathan had a bad cold and I NEEDED him to get a chest X-ray just in case. It came when my friend’s 2 year old had high fever and leg pain and I went into a panic terrified he had leukemia (he didn’t.) I can’t even think about the first time Connor gets a cough that won’t go away without starting to sweat.

Cancer seems to find us now…we hear it all the time. Most medicine commercials have ‘lymphoma’ as a possible side effect. St. Jude commercials come on literally all the time. My best friend’s dad has Metastatic Melanoma. My chiropractor’s 2 year old was diagnosed with Leukemia. My sister’s best friend just beat Lymphoma for the 3rd time. It’s time for my annual dermatologist skin check. And on and on and on it goes……because there is no ‘after’ cancer. Even when the one with cancer isn’t here anymore.

But God.

We couldn’t deal with the anxiety and fear without the Faith that He has us in His hand. That even if the worst happens, Again, that God is still Bigger than all of it. And no matter what the last 2 years has brought….and it’s brought a lot…. but still through it all, He is Bigger.

He was bigger before cancer.

He was bigger during Cancer.

He’s still Bigger now and will continue to be Bigger forever.

You should be 4

4 years ago, on March 19, 2015, I hoisted my very pregnant self out of bed at 6:15 and started to get ready for work. I was 38 weeks pregnant exactly and feeling great. I had been to the doctor the day before and she said she’d be surprised if I made it to my due date. I had had zero Braxton Hicks contractions and really no other signs of labor so I started my day like I always did. I was in the bathroom brushing my teeth when….I sneezed….and my water broke. Like movie theater, complete fish, water breaking. I froze toothbrush still in my mouth and stared at myself in the mirror.

Oh man.

This is happening.

So, I threw a towel on the floor and started calling! I called my doctor, my boss, my mom, and finally Jonathan…who of course, had woken up earlier than normal and decided to go on to the gym. I knew he’d take a bit to get home so I finished getting dressed, packed the last few things in my labor bag, and folded the last load of laundry. Our house was officially ready for Sophie.

When Jonathan got home, we loaded up and headed out. I hadn’t started contracting or anything yet so we weren’t even frazzle. Just ready to meet our girl. Then, they started. I started having some pain about 20 minutes before we got to the hospital and of course…it was 8AM so we went through 200 school zones!

We finally got to the hospital and I knew something was off. The contractions weren’t terrible but my back/tailbone area hurt so bad I couldn’t stand up. Upstairs in L&D we got checked in and settled into a triage room with my nurse Jacinda and I couldn’t even sit down my back hurt so bad. She suspected back labor was the culprit. Everything else was great. My water had, in fact broken. Sophie was doing great with a strong heart beat. My contractions were coming 3-5 minutes apart and I was dilated to a 3. My blood pressure was great…it was just that dang back pain. I had to stand up with my elbows on pillows. I

Initially hadn’t planned on getting my epidural until I was a little further along because I wanted to be able to walk around. But the back pain was too much so Jacinda was an angel from heaven and got the anesthesiologist to me 45 minutes after I checked in.

After that, the rest of the day was pretty low key. I was pain free…stuck in bed…but I was comfortable. Friends and family came in and out, I took a nap, Sophie was still doing great and my contractions were still progressing. It was slow but not too bad.

FINALLY, at 5:30pm I was a 10 and it was time to push. The first push was hard but my doctor said ‘I see her head! This will go fast!’……but an hour later, still no baby. She was stuck. We realized that the reason I was having such horrible back labor was that Sophie was what they call ‘OP’… meaning she was face up instead of face down. So her shoulders were stuck in my pelvis. She was still doing great, her heart rate was fine…but I was exhausted. We decided one more push and if she didn’t come out then I’d have to have a c-section. At that point I was honestly fine with any option that got her here safely.

Thankfully, that last push, with a little help, brought out my perfect 6lb 9oz 19 1/2 inch long Sophie Kay Skiles. She was perfect! They immediately put her on my chest and I just stared at her. I don’t remember anything else…Jonathan cutting the cord, my doctor finishing up and leaving….nothing…just her-on my chest-looking at me.

She was perfect. The hospital stay was uneventful and honestly pretty great. She nursed like a champ. We got pretty decent sleep all things considered. And we had our perfect one.

I miss her today. So much. But, I’m also overcome with thankfulness that I was able to spend 2 years 9 months and 16 days with my perfect Punkin. I’m thankful for every second.

So today, be thankful for those you love…and those you lost. And maybe today, Do More for my Sophie. Be kind…go out of your way to make someone’s day. Because she made every day amazing.

Happy Birthday my little love.

I loo much.

A New Chapter

I realized today that I hadn’t posted on the blog in awhile and that some of you on here do not have social media! So, I wanted to quickly share our news….

It’s been a rough year for us and will continue to be rough without Sophie but, we are thrilled to announce that she’s a big sister. We’ve had two sonograms and Baby Skiles is measuring perfectly with a strong heartbeat. My doctor is being proactive since I’ve had trouble staying pregnant in the past but, we all believe that Sophie picked us out the perfect one to send to us.

While our family will never be complete without her here, we love being parents and can’t wait to have this baby in our arms….and to tell them all about their Brave big sister.

Please be in prayer for us. For health for me and the baby and also for all of the emotions and anxiety that come with any pregnancy but especially with one after loss.

#Sophiethebrave #DomoreforSoph #Godisbigger #onedaycloser #childloss #rainbowbaby #BabySkiles #BetheLight

A year of lessons

I’ve been really thankful lately.

We made it through year one mostly in one piece…at least as ‘whole’ as we can be without Sophie.

Sophie.

I’m just so thankful for her.

Her life.

Our perfect time together as a family in our little pink house. Watching her with her daddy. Her laugh. Her brown eyes. Her sass and independence. Her excitement for literally everything. Even her illness because in that she taught me so much about myself, about what really matters…and about what it means to be brave.

Truly, unflinchingly Brave.

The past year has taught me a lot about myself in the sense that I’d never have ever painted myself as someone who could live after losing a child. My mom has always said ‘If anything ever happened to you kids they’ll just need to bury me next to you.’ And ever since I got pregnant with our first and then with Sophie I’ve felt the same way.

But then it happened. My child actually died. And I couldn’t just stop living. I couldn’t get in the ground with her. Life moves forward even when yours is standing still.

But how?

The last year of loss and the 7 months before that of cancer have taught me that it’s not possible without two things-faith and your people.

We’ve been held up and supported in overwhelming ways by so many different groups of our people.

Our family. Church family. Amazing friends who are family. Coworkers. Nurses. The Childhood Cancer community. Strangers. Online communities. Organizations. Businesses. Churches. Towns. Other loss parents.

The list is long and absolutely incredible. People matter in good times but especially the ones that show up and stay around for the bad stuff. That’s what love in action looks like. Just showing up and not forgetting.

God has put such amazing people in our lives and we can only pray that over time we can be there for them as they’ve been here for us. Some days I’m just overwhelmed at how much He has provided over the last 20 months. While Sophie wasn’t healed here on earth, God has been big enough to sustain and hold us through every step. The examples of grace and provision I could list are just mind blowing…maybe one day I’ll just post a list of it all. He has been good to us even in the bad. He was so good to give us Sophie for the time we had her and He continues to be good to us in her absence and in allowing us to share her story.

So yeah, the last year has been unimaginable and hard. But it’s also been powerful. There were weddings that gave us a new sister and brother. We had birthdays full of incredible love. So many Amazing trips and opportunities to share Sophie with thousands. We’ve grown as individuals and as a couple. Our marriage is in a place that can be hard but it’s also the greatest joy in my life.

And I’m thankful.

When God’s provision doesn’t feel good…

If someone asked you what provision means to you, what would you say?

I feel like most of us would say being financially stable, our family’s health, new homes, overall happiness, etc. are all examples of how we are provided for.

Nothing is wrong with wanting these things and seeing them as good provision from the Lord.

But, what if provision doesn’t come if n the way you expect? It’s challenging for us to see provision when it’s different than what we think it should be.

In Scripture, ‘provide’ can be translated to ‘to see’….So in Genesis 22 when Abraham names the mountain where he’s spared from sacrificing Isaac “The Lord Will Provide”…we can also say “The Lord Will See.”

He sees us. He always sees…therefore, He always provides. And His constant awareness of us means His constant provision.

Faith means knowing that every act of provision in my life is for MY good and for HIS glory. Even if it doesn’t look good to my worldly eyes.

Am I saying that Sophie’s illness and death are good? Absolutely not. I’m saying that I believe the Word of God is all true at all times. And because I believe that, I believe that He ONLY acts for my good. Sophie’s death was not good but, I believe He is and will continue to use her for my good and His glory. I believe that His plan for her life, my life, and the lives of those she has affected is so much bigger and more complex than my brain will ever be able to understand while I’m here. I believe that I can do ALL things through Him. I believe that He sent His Son to die so that I could be reunited with Him and with Sophie in eternity. And I also believe the hard stuff. I believe that in this world there will be trials. I believe that suffering perfects my faith. I believe the world is broken and that death, pain, and grief are part of being here. I believe it all. Does that make sense?

He’s providing all of it. The grace to get through the suffering. The whispers through His word that fortify our souls and encourage us. The joy that comes from the promises of redemption and victory over death, grief, and tears.

Yes, provision of the things we need to survive here on earth, is important but, the real provision… the provision for our souls…the fact that He sees us…that’s where we get our confidence to keep going.

He sees you. He’s with you. He will provide. Always.

Share with someone that might need a reminder that in the twists and turns of their life…they are seen.

*Song lyrics from Todd Wright Band

https://www.praisecharts.com/songs/details/71499/cant-see-sheet-music/

#SophietheBrave #DoMoreForSoph #GodisBigger #OneDayCloser #childhoodcancerawareness #lymphomasucks #cancermom #lossmom #childloss

The day time stood still…

I remember every second of December 22nd last year. There are a lot of the details of Sophie’s Lymphoma battle that are fuzzy but this day…this one is burned into my memory like a brand. The second worst day of my life.

On the 20th we had been given the ‘all clear’ to start the numerous tests needed to get Sophie’s stem cell transplant process started. We had a full body CT Scan and GI Tract ultrasound on the 21st. Then the BIG test day was the 22nd.

Aunt Jacy spent the night with Sophie and Jonathan and I got back to Cook Children’s in Ft Worth early that morning. We walked in to Sophie screaming and Jacy was very frustrated. The team at Cooks had come in to start an IV on Soph for her sedation…even though her chest port was accessed. Which is annoying but the port in an infection risk so I get them not wanting to go there. But Jacy had told them that Sophie was a very hard stick…starting IVs had been hell for us for almost 8 months…and that they needed to call the IV team because they have this magical red light that finds a good vein every time. They didn’t listen to her and had already tried to stick Sophie on one hand and in both feet (even though Jacy told them no one, in 8 months had ever gotten a foot line to go in).

Now, disclaimer-Cooks is AMAZING and the staff was amazing….they just didn’t know Jacy or Sophie because we’d only been there for 5 weeks. And they apologized for not listening. It was just very hectic to walk in on an already stressful day to Soph already screaming.

But, we got the IV in finally and calmed her down.

Transport came and took us downstairs to get started. Cook’s didn’t have a PET Scanner so we were escorted across the sky bridge to the next door Methodist Hospital.

It was raining.

A long morning of waiting, sedation, waiting, PET scan, waiting, spinal tap, waiting, bone marrow aspiration, waiting, hearing test, waiting, and heart echo then we were back in our room with a very tired baby. And it kept raining.

My mom, Mammy was there by then to trade off with Jacy and we waited. Results usually took at least 24 hours and with it being 3 days until Christmas, we weren’t expecting any news. So when our nurse came in and said our doctor was coming at 3:00 to conference we were concerned. But at the same time…this was our first day of testing at a new hospital, with new doctors, and stem cell protocol is a big deal so I thought ‘maybe they rush things for stem cell’. It was hope in my heart trying to keep out the panic.

You see, we suspected it was back but we hadn’t said it out loud…not even to each other. We rationalized the bed soaking night sweats with the fact that her tiny body was so weak and exerting her for 3 hours a day in therapy was causing it. We knew her…we knew a spike in her counts was a bad sign but her doctor was positive…and again new hospital-stem Cell…they knew what they were doing. But we knew her. We also knew the chances of it coming back were high. We knew we were fighting an uphill battle…the Everest of hills.

Then.

3:00. Time stopped.

I knew the second he walked in that it was back. His face said it all. He had been crying. Out doctor, the pediatric stem cell expert…one of the best in the nation…had been crying before coming into our room to tell us….it was back….it had spread….it was in her entire chest cavity, her bone marrow, her spinal fluid, and was now invading the right side of her heart. And we were done. She was done. Her poor little body wasn’t strong enough for the kind of chemo that would attempt to save her life. If we had tried that, she likely would’ve lost what little brain function she had left…she would’ve suffering more…and still would’ve died.

I was in bed with her and just fell on top of her. Jonathan leaned against the sink counter in shock. My mom had to sit back onto the couch.

She was going to die.

How long? Was our next question.

You know most people hear ‘3-6 months’ or ‘1-2 months’ and I don’t know what i was expecting…because nothing obviously was an expectation for this moment. But when he said…days, maybe hours. I just wasn’t expecting that. The chemo we were giving her was acting like a colander, stopping some cancer but letting some through. So no one knew how long it would take to take over once we took that chemo away.

A lot happened after that. Shocked phone calls to get the word out. Questions of what do we do now? Sobbing on the floor of the chapel. Sobbing in the shower. Walking aimlessly in a fog. Everything was in slow motion. Having the ‘funeral’ conversation.

Because no one ever sits with their spouse and says ‘hey babe, what would our child’s funeral look like? What funeral home should we use? Caskets, Flowers….’ imagine that conversation….then multiply it times 500 and you might get it.

But we had to have that conversation. While the shock was fresh… before it set in. I wanted that out of the way. I didn’t want to be worrying about planning things after. I just wanted to be her mom.

And that’s what I did.

The next day, two days before Christmas we were moved back to Children’s Health in Dallas. Our families helped us pack the room and Ronald McDonald and we put our baby in her car seat for the last time and drove her. I sat in the back next to the car seat….just as I’d done hundreds of times before….but this would be the last.

The fact that that was able to happen at all, let alone so quickly, was a miracle from God.

Even though Cook’s was great…Children’s was home. They knew and loved and cared for her for 7 months. And I wanted them caring for her at the end. Because I was done being nurse and caregiver. I wanted to get in that bed and be mama. To read books, watch movies, sing songs, rub hands, kiss cheeks, and stare. Just stare at her while I could.

And I did. For 13 days. When time stood still.